The Agonies of Being Thyroidless

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(Though this was originally written in 2009, it has been updated to the present day and time! Enjoy.)

There was a time when I thought being hypothyroid without a thyroid was really no different than being hypothyroid with one.  Hypo is hypo, and we are both dependent on treatment.

But I was wrong.

There really is a difference in our journeys–even if we both end up with hypothyroidism—and here four strong differences:

It’s no picnic to lose one’s thyroid

It starts even before surgery with a biopsy to detect if one has thyroid cancer–not always a comfortable procedure. Then with surgical removal comes the inconvenient stay at a hospital, post-surgical neck discomfort, loss of one’s voice or hoarseness and/or other potential complications. including the loss of one’s parathyroids (this doesn’t happen to everyone).  Treatment with RAI, or Iodine 1-131 to kill the thyroid, has its own risk of lifelong side effects, including gastrointestinal issues, parotid salivary gland problems, and more potential risks.  Again, this doesn’t happen to everyone, but the thought can b stressful. Read one patient’s opinion about RAI.

The stress of surgery and/or RAI can do a number on one’s adrenals

By repeated observation, there seem to be a high percentage of those who had surgery and/or RAI who also end up with adrenal fatigue with it’s nightmarish side effects, whether simply from the physical stress of removal and/or treatment, or having a Synthroid, T4-only obsessed doctor.  Being on T4-only is the number one predictor of having overly stressed adrenals, patients have observed and experienced. See the last chapter in the STTM II book by Lena Edwards, MD, which explains reasons why our adrenals can head south.

Some have a unique anguish about their vulnerability

No one can live without a thyroid.  And that thought, along with the absolute lifelong dependency on thyroid meds, is not a comfortable state, say many who had to have their thyroid removed. Granted, those with a thyroid that is diseased have that life-long dependency as well, but it’s different to know you still have it.

Life long regret can be huge

Many patients came to realize, after removal, that they may not have needed the removal at all if they had known about better treatment of their Hashimoto’s disease. i.e. there have been patients who didn’t have cancer, but simply raging Hashimoto’s which might have been better treated rather than removed.

Read the latest personal and gut-wrenching blog post by thyroid cancer survivor Stephanie Buist, who is thyroidless after treatment for thyroid cancer over a decade ago.

Need a place to chat with others who have no thyroid?? Join the Facebook FTPO Without a Thyroid group.

JanieSignature SEIZE THE WISDOM

 

 

 

 

 

 

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** In 2015, after Forest Labs was bought out by Activas, patients reported seeing their symptoms return on Armour, plus the price tripled. Read about here.

** Have you Liked the STTM Facebook page? It’s a great way to receive daily inspiration or information!

** Check out all the STTM information pertaining to thyroid cancer, right here

 

76 Responses to “The Agonies of Being Thyroidless”

  1. Nancy

    I posted this link to my Facebook page as after reading her blog, it was as if she was leading my life in so many ways and I am hoping it helps my loved ones to understand what life is like for us that have had their thyroids removed. I can’t thank you enough!

    Reply
  2. Muna

    Thank you so much for addressing being “thyroidless” and for posting the link to Stephanie Buists’ site. I understand what she is going through to some extent- I have no thyroid, but my diagnoses of cancer on the operating table turned out not to be cancer 3 weeks later-(Thank God) but I lost my thyroid anyway. It hasnt been a picnic and I appreciate you directly addressing this issue. While struggling with hypothyroidism post surgery I had a hard time understanding what was going on and my thinking process was totally messed up- I knew I was hypo, but wasnt sure if everything I was reading applied to me because I didnt have a thyroid. I know it seems obvious, but when your thinking process is muddied with “brain fog” the clearer the better!! Thanks so much for your efforts and hard work

    Reply
  3. Marilyn

    I had RAI almost 9 years ago now, for Graves Disease. I was on synthroid for 5 of those years. The first 2 years where good and the synthroid was good for me. As time whent on and more and more of my thyroid died I started to feel more and more hypO even though my labs looked good. I begged and pleaded for Armour for 2 years and finaly had to switch doctors to get it. When I finaly got on it, I started out slow and worked up and I felt great, until the reaformulation ( that another story).
    I really hate having to rely on labs and meds, for the rest of my life, just to be able to live. Last year my husband changed jobs and we have been with out health insurance for over a year now. I have no perscription, as it ran out, I can’t see the doc, not enough money, and I can’t get labs, same issue there. SO I have to struggle to find meds that I need. I can’t use Desicated thyroid like I want to, because I can’t find it with in a reasonable price for the amount I have to take. IT is a monthy struggle for me and one that I worry if I am ever going to be able to afford next months meds. It is scary to think that if I can’t afford them for what ever reason, then I will not exist and be here for my young children.
    Now on to the stomach issues, I can’t aborb potassium from my foods any more, so I have to take a perscriton that is easily aborbed and I have to take it often. On top of that I have and adrenal issues, I make to much aldestrone whitch flushes potassium on top of everything. Nothing like telling some on that tells you that you should drink more water, that you can’t because it will dehydrate you more. Kind of funny to say it too. I have to make sure that what ever I drink has potassium in it, For some reason if it is liquid form I do ok with it. THe body is a mystery and some times mine is to me too. SO far I do not know if the RAI effected my parathyroid glands yet. I need to get that checked one of these days. I also need to have another aldestorone test done again and see if there is something that can be done about having to much so we can balance things out.
    Right now because I am on synthroid and sytomel, my hair is falling out and I have all the other hypO symptoms even though I am takeing the exact amount that I would be if it was Armour I was taking. It is hard to have to live like this. I am only doin git until I can get some more desicated thyroid. I rather liked feeling almost normal rather than dragged though the med day in and day out.

    Reply
    • Buster

      If you can afford Sythroid and Cytomel, then there is NO reason you can’t afford Dessicated Thyroid Medication like Armour or Nature Throid, because the desiccated is pennies compared to the Synthetic Synrhroid and Cytomel. I pay $12 per month for 3 grains per day of Dessicated Nature Throid and Armour is cheaper than that, so you should be able to buy a years worth of desiccated for what 2 months of Synthetic Synthroid and Cytomel cost you. If not you are being WAY over charged for Dessicated Thyroid Medications~!

      Reply
      • denise

        where do you get Naturethroid for that price? I’m being ripped off. 🙁

        Reply
        • Elizabet

          I’m right there in the ‘rip-off’ line with you, Denise. With insurance, and only taking 1 grain a day ( 1/2 a.m., 1/4 lunch, 1/4 dinner) I am paying $28 a month through my insurance… So, please clue us, Buster. Thank you. 🙂

          Reply
      • ASB

        Really? You pay $12 per month for Nature Thyroid and you can get Armour for less than that? Where in the world do you live and where do I buy YOUR Armour Thyroid? My AT isn’t covered by any insurance and it costs $75 per month now!

        Just an afterthought comment: My TT actually was due to Thyroid Cancer – Medullary ThyCa – Stage 4 at diagnosis in 1997 but numerous lymph mets were visible and palpable 3+ years before that (Docs said ‘nothing to worry about; its’ not cancer’ and of course I believed them – long story for another time) …. and the more I read on STTM, the more I’m convinced that it may be related to Lyme Disease. In college, I went to school infirmary with awful fatigue, swollen glands, sore neck AND a bulls-eye rash all over my body. They did no testing and didn’t refer me to anywhere. The nurse swore I had Mono and sent me back to my dorm, saying take Tylenol, drink lots of fluids and get lots of rest. I swear I haven’t been the same since.

        Reply
    • Elaine

      I have thyroid issues too. Mine started in February 2001 after I just had my son. I had lost 90 lbs in 1 month. Went from a size 16 to a size 4. In the whole thing I had 10 biopsies done in 3 months and 7 out of 10 came back as cancer. September 2001 I had surgery and they removed my right thyroid and my life has changed ever since. The labs came back as cancer with hoshimotos disease.
      I had no clue why my moods, the way I act and temper changes so quickly. .I have been through their block on meds now.
      Finally after 15 doctors I think I found a good one in Georgia. Herr name is Dr. Giles with Laurette Medical Group part of North side Hospital. They did a ultrasound last Friday and she just called me with my results. I have 2 cysts on my last thyroid and 1 of the cyst is 4 cm! The other is very small. I am really stressed now….

      Reply
      • Lina

        Elaine–how are you doing now? Did anyone ever respond to this?

        Reply
    • Michelle

      Maybe try going to your local health food store they will probably have Raw thyroid or be able to order it for you. My health food store has it in 60 capsules. It’s not very expensive. Natural sources- Raw thyroid is the one here. It’s a good quality one so I would ask for it where ever you go. I know how you feel right now I’ve been there and it’s miserable and terrifying. It sucks. I hope you feel better soon. 🙁

      Reply
      • ASB

        Hi!
        I’ve never heard anyone mention ‘raw thyroid’. Maybe I missed it on the STTM site.
        What exactly is it?
        I was on Synthroid for nearly 17 years, felt awful, TSH came in at around 20, so I finally convinced endo to switch to NDT. However, he won’t consider any NDT except Armour Thyroid, and I don’t think my dose is high enough. I think I was 200/day Synthroid and on he started me on AT of 120/day (2×60) with an extra 60 on Sat. and Sun. That was nearly 2 years ago now and It’s never changed. I keep telling him I still feel hypo but he says my TSH is “on target” so won’t even try increasing the AT. It could be that I do have enough AT but it isn’t being absorbed properly. About a year ago I send my labs into the NTH group and was advised that I was “pooling” but endo dismissed it, again saying TSH was “on target.”.
        Does anyone know if I can supplement my AT with this ‘Raw Thyroid’ for just awhile to see if it makes any difference?

        Even after 20 years on thyroid replacement, it doesn’t seem to ever get any better, or easier….and I have so many stressful issues going on right now (some that have been going on for 5+ years) and I know stress hampers any progress though I’ve tried everything I know of to reduce stress – all to no avail.
        Can I supplement my Armour Thyroid with that? (

        Reply
        • Janie Bowthorpe

          Yes, some have added an OTC thyroid product to their prescribed one if they are certain they are underdosed (labs, symptoms). But each person has to also make sure their issues aren’t also due to having inadequate levels of iron and/or a cortisol issue, as mentioned previously. Because we’ve learned the hard way that if we keep raising in the presence of either, we’re going to have a bad hyper-like reaction, and/or rising RT3, and/or worsening symptoms, etc. http://www.stopthethyroidmadness.com/ndt-doesnt-work-for-me

          Reply
  4. Michele

    I am so grateful to see an article posted about being without a thyroid. I had surgery 3 years ago due to cancer being found in my thyroid. While I am now cancer free, the surgery has left me with a damaged left vocal cord due to it being severed during surgery. My voice is gone, reduced to a soft whisper. I feel abandoned by the medical community in my area, feeling invisible and unheard in large groups.

    I now have to worry about respiratory problems, due to fluid getting into my lungs from just drinking water.

    My medications are always being changed. My brain fog and exhaustion make people who don’t know me think I am an airhead…I also now have adrenal disease and vitamin D deficiency.

    Reply
    • Barbara Clark

      I had my thyroid removed ten years for cancer and lost a vocal cord in the process. Had a whisper voice that did not really effect me until I started a new careers that involved “talking.” Several months ago I an implant put in my ruined vocal cord and I now have a voice. I can talk loud and project my voice. Still get hoarse occasionally but what an improvement. Used a young doctor in Miami who specializes in voice issues and wow was he great. His name in Dr. Vivero.

      I am on levoxothryene at 125 and have a lot of issues… lost all body hair, nails thin, body fat, thinning hair, sleep a lot… Doctor told me Armour was “too much trouble to monitor” and that’s a quote. Told me good luck finding a doctor who would prescribe Armour and proceeded to contact my internist and tell him to not prescribe Armour. Pretty serious resistance.

      I have had 2 or 3 radioactive uptake scans in the last 10 years and am pretty certain my cancer is gone… so I wonder if THS suppression is relevant to me at this point.

      That we are all having to have these conversations sucks.

      Reply
  5. Enrique

    I had my thyroid ‘nuked’ 18 years ago and I will always regret it. If only I had the information I have today back then… I took Synthroid after that until 2 months ago when iI switched to T3 only therapy to get rid of my elevated RT3. It has been tough switching from Synthroid to T3 only but I’m hanging in there. In 1998 I weighed close to 300 pounds and switched to a raw vegan diet and went down to 170 pounds. My doc then cut my Synthroid dose in half based on my enormous weight loss. Between 1998 and now my weight fluctuated between 180-200 pounds. This year it finally caught up with me that all those years on Synthroid have affected my adrenals and created a high reverse T3 problem which I am now trying to correct. I also found out my vitamin D3 was almost zero! I’m so thankful for this great web site and Janie’s book. Hopefully more and more people will be able to make well informed thyroid treatment choices because of Janie’s hardwork and activism and avoid getting their thyroids butchered by incompetent doctors.

    Reply
  6. Sandra

    Yesterday I read Stephanie’s page and even though I know what I know about why I feel the way I do (still on synthetic since 1994) with the blessing of this site and thyroidless group, I felt so relieved that she put it into words what this journey is all about, it somehow felt like a good friend putting their arms around me and saying, it’s ok Sandra, I understand, you have a right to be pissed and hate what is done.

    I was a body builder for 10 years and an avid health nut. I even wanted to be a police woman but didn’t pass some of the tests (pre cancer). Now I am lucky to get 4 days of walking 30 minutes in without feeling drained and done in. When I switched careers from trucking to a kitchen designer without any experience 6 years ago I was so confident and positive. Now I have loads of experience and doubt myself all the time!

    But here is the big one for me. I always, always thought I would have children. I am now 46 and met my one and only hubby 10 years ago. I wasn’t in a rush then at 36 , I was feeling ok and thought we can enjoy the relationship for a bit, but then…… it all went down hill slowly. The thought of staying up at night with a newborn scared the beep out of me.

    I too had RAI and suffer from serious multiple food sensitivities, candida, and all the symptoms that go with that. I work full time and have to make all my food that is gluten, dairy and sugar free and rotate all my foods every four days . I can’t even enjoy a treat over christmas as the sugar makes me crash and burn.

    I wish that everyone who is searching for answers does not doubt one fact on STTM, does not doubt what these wonderful woman and men are saying and does not put their faith in their MD or even their natural doctors if they tell them anything differently.

    Is it me or is it a coincidence that all these incredible, caring souls who have dedicated their lives to this cause also are the ones who have thyroid disease, cancer etc. Perhaps it has been said before, but do we all share a common trait that we have not always put ourselves first in a healthy way. I know for myself that is the case and it is one part of this journey that has taught me when to say NO because now I now have no choice. It is a very tough way to learn this lesson but I do get it and now I am thankful to not feel guilty a little less.

    I have the ups and downs and today is an up day, so I don’t mean to deny all the pain that is there but I guess the spiritual believer in me believes that I will get better and I will have my life back even if it is not in the way that I always dreamed, just different.

    Reply
  7. Sandra

    Oh I forgot to mention that if you are trying to figure out is you should let them take your thyroid and put you on synthetic thyroid hormone you had better be prepared to spend thousands of dollars on naturopathic doctors who will look for every other thing to be the problem with your health and not your thyroid. Prior to finding this site only 6 months ago I have spent the last 4 years going to 6 different naturopaths and have exhaused our savings.

    Reply
  8. Abigail

    Thank you for the link to the blog! I had no clue there was an alternative to surgery for removal of metastisized thyroid cancer. What would have been the alternative?

    I had surgery less than a year ago and treatment with synthoid left me feeling horrid. My doc refused to give me anything else, so I switched to an ND. The ND gave me cytomel (when I asked for armour he said let’s first figure out how much cytomel works for you- on top of the synthroid- and then we’ll do the conversion from cytome/synthoid to armour)

    Then I tested myself for RT3 and it was high. So I got myself onto cytomel-only treatment.

    As I cannot raise too much cytomel at a time (my cortisol reserves are low, and I’m working on that, taking HC) I’m underdosed on cytomel-only treatment, until I bring my dose up to adequate levels.

    Now my TSH is above 40 and surely a good time to do another iodine-uptake body scan 🙂

    TSH is supposed to be suppressed, they say. I wonder if they’re right. At this point I don’t know what to believe.

    With a high TSH, they say, any remaining thyroid cancer cells can reproduce.

    So how does one treat thyroid cancer naturally?
    I’m gluten free, sugar free, dairy free, taking 35 mg. cortef, and fludrocortisone for low aldosterone, and cytomel.

    Yes indeed, I have learned the hard way to finally put myself on top of the list of priorities.

    Reply
  9. Abigail

    I also want to mention, when I was on synthroid, I had symptoms I used to have while on gluten. I checked out synthroid’s ingredients and gluten was not listed. Yet my endo at the time said it does contain small amounts of gluten. He tested my blood for antigliadin antibodies and transglutaminase antibodies and indeed they were mildly elevated due to the small amount of gluten in the synthroid. So he gave me levoxyl instead. Same crap. A short time later I fired this endo for refusing to recognize my adrenal fatigue and for refusing to give me cytomel, and for telling me my bloodwork and ACTH were fine, when the laboratory personnel indicated my levels were NOT fine.

    Reply
  10. Linda

    Abigail, Since it has not been a year out from your RAI, a body scan will not tell you anything at this point. It can take up to a year for the old cancer cells to die off. What would be prudent however, is an unsuppressed (hypo) Tg with TgAb. If you have no antibodies and your Tg is not rising, that is good. I am a 44 year thyroid cancer survivor who never scanned more frequently than yearly. You are doing the right things. You can read more here: http://www.naturalthyroidchoices.com/ThyroidNutrients.html

    Reply
  11. Abigail

    Linda, thank you for posting. My doc seems aggressive. Possibly because it was stage 3 cancer?
    He said that because of my young age I will get the most aggressive treatment so as to avoid recurrence. So I got one dose of 150 radioactive iodine in June 2009.
    I don’t want to go for scans at all. I hate them. I hate thinking of thyroid cancer. I just want to get my energy back and move on.

    Has anyone ever felt ‘back to normal’ after removal of thyroid? Depends if adrenal fatigue is an issue?

    Reply
  12. Alyce

    Dear Abigail,
    Yes, It does get better over time. I had mine out at 24 and am now 42. I too HATE doing scans! They stress me out so much. I finally had to take an Ativan before hand because I would lie there on the table sobbing like a baby.

    I too find myself wanting to block out the whole cancer thing. I mostly focus on working toward feeling good. After being on Synthroid for 15 years and not knowing why I felt so bad. My brother in law told me about natural thyroid medications and it’s been life-changing. I can’t speak highly enough about how much better I feel on them.

    It’s very important to find a doctor who is willing to make recommendations based on how you feel not just what your labs say. It took a long time to find her but it’s been well worth it. With the help of a good doctor, I’m feeling on top of the world.

    Best of luck to you in the future.

    Reply
  13. Linda

    Hi Abigail,

    Yes adrenals need to be supported well so you can tolerate the T3. Perhaps you need more HC? Are you on any of the support groups?
    http://www.stopthethyroidmadness.com/talk-to-others
    Since you are hypo now, it is the optimal time to check your Tg. A scan before a year out from a treatment dose of RAI has the potential to make you RAI resistant. A good radiologist will know that it can take up to a year for old cancer cells to die off. There is so much in that sentence that probably is not clear to you and it is hard to discuss in this format. Ask Janie for my email adress if you want to discuss this further.

    Reply
  14. Abigail

    I have tested positive for TPO antibodies. I will request a TG antibodies on my next blood draw. Is that thyroglobulin antibodies?

    Reply
  15. LindaD

    Yes, TgAb is thyroglobulin antibodies. 🙂

    If you are positive for TgAb, then your Tg will not be a reliable tumor marker for thyca. 🙁
    Linda

    Reply
  16. Soni

    I was forced by my endo to have RAI done for graves disease almost 2 years ago.
    Since then ive been on Levothyroxine (T4) and have gained about 15kg.
    I work out every day with a trainer aswell as doing cardio by myself. I recently took a week off work doing exercise for 5 hours a day for 6 days and have managed to lose a total of zilch. I feel so frustrated and totally regret ever having done RAI. My doctors in the uk refuse to put me on anything but T4. I have now ordered Cytomel from an online website and was wondering if anyone here had experienced weight loss with this?

    Reply
    • Amy

      Soni,
      I feel your frustration. I had my RAI 12 years ago and have been trying to loose weight for about 6 years without success. I switched to armour 3 (?) years ago. My thyroid seems to be improving and now I’m pretty certain that my hormones and adrenals are out of whack. It is a long journey, full of a lot of disappointment and frustration. I would see a new doctor. Here in USA, I have to drive and hour and a half to see someone who will prescribe armour, prometrium and a rt3 compound and she doesn’t take insurance. If you can’t find a doctor a homeopath may be a good place to start. I’m very activate taking high intensity gym classes play soccer and lacrosse, i sure don’t look or feel like in do. Don’t give up!
      Amy

      Reply
  17. Eileen Corrado

    just wondering how I find a good doc for treating hypothyroidism. I have been on meds for nearly 3 years. I still feel very lousy, tired and muscle aches. weight gain, hair loss, headaches (have no idea if that is related) Reading posts on this site and having heard of natural treatments for hypothyroidism. I am very interested in finding out more and seeing if I can find a physician in my area. It is a frustrating disease and I work and have 4 kids, I just get completely worn out. Thanks you for your time

    (From Janie: http://www.stopthethyroidmadness.com/how-to-find-a-good-doc )

    Reply
  18. Suanna

    So by now I am certain that I’d better try other options before the surgical removal of my thyroid. How do I do that after I informed my self and refused the -old way- cut, burn and expect nightmares…I go back to my family doctor and talk to her about the tests that would need to be done so she would afterward be willing to prescribe something or I look for a naturophat ?? Yes I am diagnosed with papillary thyroid cancer after ultrasound and needle biopsy ( both doctors the otoralyngologist and his friend dr oncologist turned me down for more tests, MRI, pet scan, ADDITIONAL BLOODWORK because it is not necessary to determine if the TC spread elsewhere ) and now I don’t know where to go for an alternative treatment… 🙁

    (From Janie: get more feedback from Stephanie Buist of http://naturalthyroidchoices.com/ )

    Reply
  19. Christa

    I too had my thyroid removed. No radiation needed.A nodule was found in my neck;had a needle biopsy and was scoped.About 3 months before this I was diagnosed with Hashimottos. Well,the surgeon said the nodule was cancer and removed my whole thyroid and reported there was no cancer in the glands or parathyroids.
    The first three months I was on 1.25 mcg Synthroid and felt great, but my numbers were too low; so my endo up it to 1.75 mcg. And it liked to kill me. I had symptoms of a stroke, incredible muscle and joint stiffness,could barely walk, and could not hardly get out of bed. I had no dexterity in my hands, could not lift my arms,and became exhausted very quickly.
    I have had every test one could think and all were normal. The endo told me to see my PC physican. So he has been trying to adjust my synthroid by how I am feeling. Things are still bad. So he has now switched me to Armour and I am slowly starting to heal. I have been unable to work since March. I am 55 years old and always active.
    I’m hoping we will get the right dosage and I can get back to my old self.
    I have also learned it is not unusal for someone with Hashimotos to get non-cancerous nodules on their thyroid.
    My advice to anyone is think long and hard before agreeing to have your thyroid removed.

    Reply
  20. Sandy

    6 mos. ago both right & left thyroid were taken out due to thyroid cancer. Full body scan found no cancer anywhere else but have gained almost 20 lbs. and i barely eat anything. i dont eat junk food, i love salads but an average salad can put 2 lbs on. Im on 150 levothtroxine but always feeling depressed, fatigued, insomnia, sensitive emotions, no appetite, yet i still gain weight…is there a book that will help me find a way to lose weight and keep it under control. Exercise does absolutely nothing.

    Reply
    • Janie Bowthorpe

      Sandy, so sorry you had thyroid cancer but happy to read it’s gone. 🙂 Many patients will tell you that your problems are from being on levothyroxine, which is T4-only, yet a healthy thyroid makes five hormones. Patients on T4-only have reported depression, feeling fatigued, gaining weight etc. So the STTM book will help educate you on how to make the right changes in your thyroid treatment, which in turn can help the issues you stated: http://www.laughinggrapepublishing.com

      Reply
  21. gail joss

    Hi.would appreciate advice please.have had graves 17 years.four months ago,crashed completely with thyrotoxicosis.was on ptu and then weaned off because there was a slight improvementin my blood work.have hardly moved in four months im so exhausted.used to do physical work and an average day was 18 hours.now im proud if i get dressed.was told last week my bones are being affected and a new nodule that looks like cancer.my blood results are worse than four months ago.feel like im being steamrollered into surgery.all they see are their results and not a human being.really have no clue what im supposed to do.

    Reply
    • Janie Bowthorpe

      Gail, sorry to read what you are going through. Have you checked Elaine Moore’s website? She’s a great advocate for Graves. I’d also look into Low Dose Naltrexone for Graves.

      Reply
  22. Bonnie Campbell-Schmelzer

    Similar to Sandy, I was only to have the left lobe removed due to rapid growing tumors. Once they opened me up, they found more on the right lobe, connective tissue, and 11 suspicious lymph nodes and all were removed. It had taken me over three years arguing with doctors that something was wrong. I’m small framed, never weighed over 102 lbs, and kept gaining weight, even without eating anything. I’m now at a dangerous 169 lbs and climbing! I’ve tried all sorts of expensive “physician monitored” programs. One RN accused me of lying on what I ate. (Talk about not only being unprofessional, but pushing someone into depression!) So, their physician recommend I find out why my metabolism was near nonexistent, and I did. Since my labs were “border normal” one doctor who’d I’d known and worked with for years, told me she could find nothing wrong and could recommend a good psychologist for me! (I did go to one who told me my problems were definitely medical and I was the most sane, stable patient he’d had in a long time. He told me that I needed to fight to find a doctor who knew what they were doing.) I kept going to doctors until I found one who actually listened to me. That’s how I found out I definitely have Hashimoto’s, Metabolic Syndrome, Renaud’s…and now have developed “Non Mutation Hemochromatosis” with NO explanation yet. They haven’t been able to get my thyroid levels correct for over seven years now. I feel I just keep developing more medical conditions that are addressed like band aides on a giant burn. How can I find out the underlying cause of all this before more pre-cancer turns into cancer? I’m now seeing a Hematologist Oncologist, but don’t feel I’m getting anywhere close to answers. I have to have my blood drained every four weeks – another band aide. I feel sick all the time and actually crashed last phlebotomy and had to have IV to get my bp up and my vitals stable. Again, they don’t know why my body reacted that way. I know this is a lot of info, but I read your articles and need a sane opinion which direction I can take my health care in. Suggestions?

    Reply
    • Janie Bowthorpe

      Bonnie, so sorry to read what you are going through!!! You didn’t mention thyroid meds, but patients simply do a LOT better with natural desiccated thyroid and NOT dosing by the TSH. If you let any of those doctors dose you by either of the latter, you stay hypo, we’ve learned over and over. With Hashi’s, you have to get the antibodies down, as well. Here’s where you’ll find a list of great patient groups for feedback: http://www.stopthethyroidmadness.com/talk-to-others

      Reply
      • Janie Bowthorpe

        I neglected to add—sounds like you would benefit from genetic testing. Read http://www.stopthethyroidmadness.com/mthfr

        Reply
      • Bonnie Campbell-Schmelzer

        Thank you, Janie. The meds have changed constantly. Forced on Synthroid, but demanded to try something else. Tried Liothyronine, T3 mixology, Cytomel, now Armour. Levels are up and because they go by labs, not how I feel. They can’t seem to find the correct formula yet. So I’m researching it for myself since they told me I may just have to live with it. (Really? I’d like to see them settle for that answer if it were themselves!) I’ve also had the genetic testing and it is not hereditary Hemochromatosis. They don’t know why I developed it and won’t give more info except it may be caused by underlying cancer or disease they haven’t detected. Thank you for the info. I will look into it. Thank you for having this site.

        Reply
        • Janie Bowthorpe

          The MTHFR mutation can cause the high iron. That’s why you need fuller genetic testing that is mentioned on the MTHFR page I sent.

          Reply
  23. Dimitri

    Well, I’ve been living without a thyroid gland for 38 yrs and 7 months minus 1 day now…. I was born without it… There are still days I curse Nature.

    Reply
  24. Christy

    I have a big knot on my neck that has been there for years finally after insisting something is in my throat and difficulty swallowing a ultra sound showed a nodule on my thyroid. Can this knot in my neck be related?

    Reply
  25. Monica C

    Hi. I’m thyroidless for 3 years now (they saw pre cancerous cells but it wasn’t cancer just one of the biggest thyroids they had ever seen) my question is this. My Dr has me on 2 and 1/4 grains of Armour daily. My labs show that I’m “hyperthyroid” hahaha! As if! I’m still at least 50 pounds overweight with it allll in my stomach and face my hair is wiry, frizzy and just a hot mess(so not normal)I have absolutely no appetite but cannot loose the weight and I am tired all the time, cranky, no period for 3 years(I just turned 46) low back pain, NO sex drive, mild headaches just about daily, hair growing in places that is not normal for a female in my opinion(except my eyebrows- they look ridiculous) sweat like a pig on a daily basis and brain fog that is insane. So my question is this: should I have my adrenals tested? About 2 years ago I was able to convince my Dr to test for Rt3 as I was concerned – after listening to her PA tell me that they only do that for people who are on their deathbed in the hospital and that since I didn’t EVEN have a thyroid that it was useless to test me! Rt3 was 17.
    The ratio of ft3 to rt3 was 16.5. Info I had read said it should be 20 or higher(the ratio). At that time I was only on 2 grains of Armour so after much fussing and fit pitching by me to please add cytomel – she refused and added the 1/4 grain of Armour. I have just been going thru the motions as she once said well you’re not getting younger girl – to which I said oh wow well I guess I don’t consider myself old. I mean if this is as good as I can feel then my life is gonna be nothing but misery until I die.
    I just want to thank anyone who reads this and can give me some advice on whether I should test my adrenals even tho I don’t have a thyroid.
    Thanks so much,
    Monica

    Reply
  26. Monica C

    Thank you so much Janie for responding. Yes she ALWAYS looks at my lab values and doesn’t really listen much to me about my symptoms. Ugh! I can’t wait to see her reaction when I ask for the saliva test – it ought to be interesting that’s for sure.
    Thanks again. And I’m going to read the suggested links.

    Reply
  27. Karen

    Im 61, had thyroid removed 2 years ago. Have good nurse practicioner ( I think). Been on armour 90ml for years. T3 is 4..0, tsh very suppressed. I feel great except. I was able to lose weight by calorie counting just 5 months ago, then all of a sudden I have gained 55lbs in 4 months. A month ago I started calorie counting again. 1200 calories and walk on treadmill 40 minutes 7 days a week at high speed and #4 incline. Nothing. No weight loss at all. I’m so depressed over this. Any suggestions? Also I am sweating profusely all the time from the neck up. Am post menopausal.

    Reply
    • Janie Bowthorpe

      Karen, believe it or not, 90 mg is hardly ever an optimal dose, and it may have come back to bite you in the behind…or your low estrogen is the culprit for the weight gain, which is common after meno. But I would explore your adrenals and iron. For adrenals, you need to do the Discovery Steps in Chapter 5 of the revised STTM. The four iron labs are here: http://www.stopthethyroidmadness.com/ferritin

      Reply
  28. Karen

    Janie thank you for your reply. I’m confused. Do you think 90ml is too small of Armour? My latest blood test was TSH .12, T4 1.1, T3 4.2 TPO 25. Did self adrenal test Ex: bloodpressure, and flashlight in mirror. All normal. Blood test says iron normal. Within past six months also have been sweating profusely usually from the neck up. My doctor says its from my weight gain. I’m a speptic. I have done so much research on which way I should eat while thyroidless to lose weight. I have tried Paleo, but had to give myself weekly enemas due to constipation even though I take magnesium. I have done calorie counting to no avail. This has all changed within the past six months. Nothing has been different in my life. Before that I was able to lose weight. I am so depressed right now. I have worked so hard dieting and exercising. Doctor says carbs are toxic to me. (just guessing) The only thing I can think of is 7 months ago I had a Nissen Fundilacation. Proceedure to stop acid reflux done at Mayo clinic, but I have lost some weight since then within the first month. Monday I go to a new doctor. He’s a homeopathic doc. This is my 5th doctor. He will have my new blood results then.. My old doc says to stop exercising because she’s guessing my adrenas are fatigued, the new doc says its not my adrenals because I have lots of energy so I should still exercise. Any suggestions. Also what did you mean that it may have come back to bite me. Please explain. Thank you so much for your help . Karen

    Reply
  29. Karen

    ps. I was also told I was estrogen dominate

    Reply
  30. Katie

    I wasdiagnosed with HYPERTHYROIDISM AND GRAVES about 15 montha ago. I lost 50_60 pounds…then I hospitalized with extreme toxic thyroid for 8 days and bed ridden for 2 month! With the toxicity I lost another 20 pounds and was near death. Theh put mr on methamazol for6 months. I gained back 50 ppounds, my eyes were effected (one big, lme little), along with hallucinations and vomiting. ..horrrid! Before mysurgery on the metamazol I gained 60 pounds, no.energy, emotional problems and aging problems! !! Finalyrhad my surgery in June of 2014.. My endo put me on 100 mg of levothyroxine!! Lol still no energy nor sleep along with weight gain!/!? Why. Call me crazy but I went a week without my levo amd lost 7 pound. Im.waiting to see another endo and havent picked up my lebo hormones in a month. Hmmmm I have went down 2 pant sizes and lost 16 pounfs.. o did I mention I have incredible energy! !! So scared to get back on the hormones. But I have been told I need it???? But im freaked. I finally feel great! Im on lexapro and nerve meds. Dont know whay to do. I will catch up after new Dr. Apt.

    Reply
  31. Tammie

    I was recently diagnosed with thyroid cancer and my endo immediately recommended a thyroidectomy. He made me feel as though that is the only reasonable solution and I would be fine for the rest of my life as long as I take meds. I really appreciate all of you who are open and honest about your struggles. I am still trying to make a decision but I am not sure what I should do.

    Reply
  32. Hadassah

    Janie , I’m very GREATFUL to you for empowering me and pushing me to beg the DR to at least add for me cytomel . I’m on synthroid 100mcg . He gave me 5mcg cytomel . I take synthroid at night before sleep sublingually. And wanted to know in the morning if I can sublingually take cytomel ? And How much later can I eat and take vitamins ? I take lots of vitamins . I wanted you to know how MUCH BETTER I FEEL . I THANK YOU !!!!!!!!!!!! (THYROIDLESS)

    Reply
    • Janie Bowthorpe

      Lots of people do their Cytomel sublingually, yes. All we avoid at the same time is calcium, iron and estrogen–they will bind some of the T3, though not all. Other food really doesn’t. Hooray that you feel better!! And do know that most patients report having to take much more than 5 mcg over time, and they take it 2-3 times a day. You’ll eventually figure that out.

      Reply
  33. Hadassah

    Janie , “Liothyronine” is that the same as “cytomel” ? And how long should I wait to take calcium and iron ? And since I started 5 days ago should I cut the pill in half and take half first thing in the morning and second half later only because I don’t want to get palpitations ? I would like to do it slowly but surely . Thank you for all you do for me and others. Words can not express my appreciation .

    Reply
    • Janie Bowthorpe

      Yes, they are the same…both meaning T3, though Cytomel is just the brand name of T3, not the offical name for T3. We are guessing to wait at least a few hours before or after T3 if you need to take calcium or iron pills. There are all sorts of opinion out there, but as long as we are not taking them at the same time, we’re good. Most patients take T3 approximately 4 hours apart and during the daytime hours, but it’s individual.

      Reply
  34. Hadassah

    Janie , do we as thyroidless need to supplement with “iodine” ? In my Multi vit . I have 200 mcg as potassium iodide . Should I add more ? I heard a lot about Iodral but don’t know if I need more ? I did have myself tested by “Hakala” and I excreted in 24 hrs . 61% . as of Nov . 20015 .

    Reply
  35. Teresita Edna Munsayac

    I am 71 years old, my thyroid was removed Jan 6, 2016 and taking levothrovine 1mg in the morning, I noticed having headache and constipation, but eating pineapple help, also I’m diabetic and insulin user, my dosage went up from 8 units 3x a day now its 15 units, I’ll see my doctor next week Jan 16, 2016 and will update you guys, so happy and I know this blog will be a great help.

    Reply
  36. Jill

    Hello everyone !
    I am a 24 year old, living without a thyroid for 4 years.
    I had a total thyroid-dectomy because of Graves’ disease, thyroid storm and heart failure. ( although I was sick, as in my life in danger sick……… I’d didn’t feel nowhere near how I feel now)
    – severely anemic have gotten a blood transfusion 2 years ago and just recently on iron infusions
    – nearly bald
    – weight gain of 40+ (since surgery)
    -no energy
    -fatigue
    – moody
    -easily angered
    -always cold
    -always napping
    – undereyes have giant puff bags
    – muscle &joint weakness
    – randomn episodes of crashing. As in need to go into bed , about to pass out and sleep
    But worst of all is the brain fog ! Some people think I’m weird because, I of slow reaction and thinking responses. I work SO hard to think! It’s like when I’m trying to talk , I completely forget about what I’m going to say mid sentence .
    It’s horrible !
    After 3 years of two endo’s giving me at synthyroid/cytomel. I have finally found one who prescribes me amour. He recently just amped me from 90&15 mcg to now 120. I feel a bit better, not much…… It could be the recent iron infusion as well. I try to tell him to treat me according to my symptoms but he insists my labs are normal and completely dismisses me.
    I’m new at this, and completely overwhelmed with the information
    Can someone point in the right direction
    I’d really appreciate some insight, I feel as failure as mother of two small children. My sickness affects my family life so much.

    Reply
    • Kristine

      Jill, if you haven’t already, please go to the Facebook groups FTPO (For people without a Thyroid) https://www.facebook.com/groups/FTPOWithoutAThyroid/ and also the Thyroidectomy group https://www.facebook.com/groups/FTPOThyca/, which is really supportive. You will get a lot of information from some beautiful people who have gone through the same as you, and many of us are still struggling every single day. I have myself just changed for NDT (TT 6 months ago) , it’s hard but I feel the changes. I hope you find help and the most important thing is that you read up on your condition so that when you talk to your doctor, you are empowered and can ask for the right tests and get some real help!!! good luck!

      Reply
  37. Faith

    I’am so glad I found this, learned so much. 6 years ago I had my thyroid removed, (not due to cancer,) I had a goiter, one side of my tyroid was not working the other was getting just as bad. (5 females in my family, three have thyroid problems). I have learned a lot from all of you and will past it on.

    Reply
  38. sarah

    I had RAI a year and a half ago…when I as given the rai I was a month pregnant, and even though I was given 2 pregnancy tests before hand, they gave the stuff to me. Thank goodness my baby boy is perfectly healthy, and thank goodness I am alive. So many blessings! My problem though is that my endo treats me like I’m stupid, she acts as though she has no time for me, never gives me any info, treats me like a child when I ask questions, and scolds me when I bring up info that I found on the internet.

    When she ordered the RAI, I asked her why, and what my diagnoses was. So far all I knew was that I was hyperthyroid. Frustrated, she answered, “Hashimotos, Graves, whatever.” and claimed that my anti thyroid meds just weren’t working. She didn’t tell me anything about the procedure, simply scared me into it, so here I am wondering if I even needed it before trying…I dunno, anything. She left me thinking I had no options, and maybe I didn’t.

    Now the last time I saw her I explained that I has feeling crappy, tired, listless, generally just exhausted along with the obvious weight gain, and mentioned that people online were talking about T3 supplements. (currently on 125 mcg. Levothyroxine) She laughed and said, “Well since you did your RESEARCH I’m sure you KNOW you have no thyroid so you don’t make T3 anymore, so you don’t need it. I check your levels every time.” well…okay…am I missing something? Uneducated as I am on the topic, and as skeptical as I am to believe everything on the internet, I can’t help but think my endo is giving me false information almost all of the time. Graves and Hashimotos are two different ends of the spectrum, right?

    I’m seriously considering seeing another endo, however they are all so far away, and I’m not sure if she’s even wrong. Really wish I had another source of information than a specialist that doesn’t tell me anything, and google.

    Reply
  39. Nancy

    I had my thyroid removed in 2007 due to Hashimotos and other autoimmune deficiencies. I weighed about 170 at 5’9″. I am now at 216!! I have never weighed so much in my life!! About 5 months ago my Endo that I have been going to ever since I had my thyroid removed and told me so many times that he is doing his job and I am gaining weight because I am getting “older” and I am a woman and may be going into menopause. I just turned 50!! Anyway, he said that my “levels” were high and he needed to reduce my synthroid dose. Ever since he did that, I have gained an additional 20 lbs!! I know we all say this and it is SO true, I walk every day, drink protein smoothies with kale, egg protein and berries, tons of water… I have cut everything I consume in half for the past two months! I continue to gain weight, am tired all the time, thirsty like no tomorrow,dry skin, significant joint pain, digestive issues etc.. This is the most frustrating quality of life and those of us thyroidless can ALL attest!! Any advice would be SO appreciated!!

    Reply
    • Janie Bowthorpe

      This is your problem: http://www.stopthethyroidmadness.com/t4-only-meds-dont-work

      Reply
      • Nancy

        Thank you! I find this information so interesting!
        I went to see my primary care doc last night and she warned me against the combination thyroid meds as well as going to a new endo. She said my numbers are exactly where they should be and I have had so many blood tests done, there are no more to do. She said “Only T4 is needed” and my numbers are “normal.” Now I am confused. She said she thinks that the idea of combination med is dangerous! And yes, she said I need to “watch what I eat, small meals several times a day, weight train and drink more water.” Now I am frustrated! I am tempted to start taking weight loss supplements just to get some of this weight off!!

        Reply
        • Janie Bowthorpe

          Your doctor is exactly why the Stop the Thyroid Madness movement started in the first place! Study this: http://www.stopthethyroidmadness.com/t4-only-meds-dont-work

          Reply
        • Bob T

          I would try a new ENT, and a new GP.
          I had my thyroid removed due to plapillary cancer. I wish now I had not let them remove it.
          http://www.ctvnews.ca/health/many-thyroid-cases-overtreated-report-concludes-1.3038648#_gus&_gucid=&_gup=Facebook&_gsc=8Wwy2wb
          I find a lot of good information on this site, but am still a work in progress and am on my 3rd ENT, and am starting to feel a little better now that I am finally on NDT (small dose, slowly increasing).
          I had terrible issues when they gave me Synthroid, Not quite as bod on Cytomel, but my feet were so swollen I could not walk. They then gave me Eltroxin (basically same as Synthroid) which put me back to square 1. Finally, I some how managed to talk them into trying NDT.
          Get you T4, T3, reverse T3 checked and use the info from this site to take with you to your doctor (a copy of the book helped me as I could not remember much with out a reference). My opinion is that most doctors have no idea what they are talking about when it comes to the Thyroid and it’s related hormones.

          Reply
          • Janie Bowthorpe

            Glad you got on NDT! Yes, we all raise until we find our optimal dose based on symptom relief, the free’s, temperature, etc.

            Free T3 and free T4, by the way, not just T3 and T4. The latter are totals which tell us nothing; the free in front tells us what is unbound and available for use. 🙂

  40. NoName

    I am 7 years thyroidless. I had to have it removed due to cancer and had RAI once. I don’t recall the period after the RAI, trying to adjust the dose of Levothyroxine. I know I have been very tired and fall asleep early every night, naps are my favorite. I am not sure if there can be any effects of long term on that medication, but have been very tired in the past 2 years. My TSH was usually kept lower than one and after my second pregnancy they had trouble adjusting my dose. I am now back to my old dose but my TSH is around 1. This is supposed to be good but I feel really fatigued, body is cracking and popping, I wake up stiff, weak. I am always sleepy. My mood is either depressed or anxious. I checked my TSH 3 months ago and it was 1 again. This sounds perfect but I am not. I recently read that with papilliary cancer they do not recommend to remove the thyroid but to watch what happens. I am not sure what is better but no thyroid is no walk in the park. Before my TT I had an ovary removed too. I have only one. My body feels broken. I feel broken. I am clueless what to do. I just follow my doctors recommendations and they seem to always say: you are fine!

    Reply
    • Janie Bowthorpe

      Hi NoName. I am so sorry that you feel so broken. 🙁 We have been there, having doctors say we are fine, simply based on a pituitary hormone lab result and a very awful range. I went through that nearly 20 years while getting worse and worse. Here’s where to start…learn why you feel so bad here: http://www.stopthethyroidmadness.com/t4-only-meds-dont-work When reading that, you’ll see a link to a much better thyroid med and how patients have learned to use it (which by the way, isn’t about using the lousy TSH lab test). It is life-changing once you learn it all, and you’ll need push your doctor for what is right for you. Some have to find more open-minded doctors, but we still have to guide them, NoName. So learn from STTM!

      Reply
    • Bob T

      Hi NoName,
      I also had many extreme issues with Levo (Synthroid), and also had my Thyroid removed due to cancer. I had a list of side effects including heart issues (arrythmia and tachycardia) – 4 trips to the ER in 10 days and doctors told me it had nothing to do with the Synthroid, although 4 days before removing my Thyroid I was on a 17km hike… I also had mental fatigue, anxiety, diarrhea, brain fog, felt “tired but wired” (like I drank 100 cups of coffee constantly), I went days without sleeping, dry skin and hair, and lots more. I was experiencing symptoms of both hypo and hyper thyroid, and the doctors were telling me it was all in my head. I felt like I was going off the deep end, and no one would listen. My heart was so bad my heart rate would jump from the 60’s sitting on the couch up to 140 or 150 just walking to the kitchen sink to get a glass of water. The doctors were telling that this was normal, or it was anxiety. This is not normal!
      When they tried Cytomel, most of the issues went away, except for the “tired but wired” feeling, and my feet started to swell up within about 10 days. After a month or 2 I could barely walk. 9 months later they tried Eltroxin. All the symptoms I had with Synthroid came back.
      Now I am finally on NDT, slowly increasing the dose. I am starting to see the light. I have yet to talk my doctor into testing my reverse T3, and have sent in my own cortisol test I purchased, so when I get the results back I will take them with me also to my next appointment in November.
      I know people personally who have had their thyroid removed and have been on Levo for years without issues, but I cannot believe that the doctors would not believe me when I was experiencing the symptoms I did. You have to fight for yourself and bring as much ammo with you to your doctor appointments as you can get your hands on.
      If you are like me and are experiencing “brain fog”, it really helps to print some of the info on these pages out for reference when you go to see your doctor, or better yet, get the book (I did, it really helps). And no, I do not get commissions… (LOL).

      Reply
      • Janie Bowthorpe

        Good info, Bob!! And you know what has come to light over the years?? That even those who feel they are just fine on T4-only/Levo….aren’t in some areas. They do have symptoms of a poor treatment they just live with, or don’t understand are connected. Or they eventually get much worse.

        Reply

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