There was a time when I thought being hypo without a thyroid was really no different than being hypo with one. Hypo is hypo.
But I was wrong. There really is a difference in our journeys–even if we both end up with hypothyroidism—and four strong ones:
- It’s no picnic to lose one’s thyroid. Surgical removal, called a thyroidectomy, can come with neck soreness, loss of one’s voice, and other complications. including the loss of parathyroids. Treatment with RAI, or Iodine 1-131 to kill the thyroid, has it’s own lifelong side effects, including gastrointestinal issues, parotid salivary gland problems, and more. A good website about the controversy of RAI is atomicwomen.org.
- The stress of surgery and/or RAI can do a number on one’s adrenals. I suspect that there is a high percentage of those who had surgery and/or RAI who also have 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 is the number one predictor of adrenal fatigue.
- Some have a unique anguish about their vulnerability. No one can live without a thyroid. And that thought with the absolute lifelong dependency on thyroid meds is not a comfortable state.
- 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 the fallacy of the TSH lab test, or the idiocy of T4-only meds, or potential benefits of iodine, or natural desiccated thyroid like Naturethroid, compounded, or Erfa Thyroid.
Read the latest personal and gut-wrenching blog post by thyroid cancer Stephanie Buist, who is thyroidless after treatment for thyroid cancer nearly 10 years ago. Also see the Talk to Others link below to find the Thyroidless yahoo group.
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Curious what’s going on with Naturethroid or Westhroid production and availability? RLC Labs has a Patient Information Line you can always call for the latest information on Naturethroid and Westhroid availability: 877-600-4752.
Want to write a post for the STTM blog?? Beginning in 2010, I will be reviewing and accepting “thyroid patient guest posts” on the STTM blog in between my own. You can read about it here: www.stopthethyroidmadness.com/writing-a-guest-blog-post-on-sttm/
Want to honor someone who has helped you?? See the blog post below and thank someone.
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This entry was posted on Tuesday, December 29th, 2009 and is filed under hypothyroidism. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.
Nancy said:
Dec 30, 09 at 4:25 amI 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!
Muna said:
Dec 30, 09 at 6:13 amThank 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
Marilyn said:
Dec 30, 09 at 8:38 amI 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.
Michele said:
Dec 30, 09 at 12:46 pmI 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.
Enrique said:
Dec 30, 09 at 11:14 pmI 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.
Sandra said:
Jan 01, 10 at 8:21 amYesterday 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.
Sandra said:
Jan 01, 10 at 9:04 amOh 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.
Abigail said:
Jan 03, 10 at 11:05 amThank 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.
Abigail said:
Jan 03, 10 at 11:18 amI 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.
Linda said:
Jan 04, 10 at 11:37 pmAbigail, 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
Abigail said:
Jan 05, 10 at 8:05 pmLinda, 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?
Alyce said:
Jan 07, 10 at 10:40 amDear 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.
Linda said:
Jan 08, 10 at 9:23 pmHi 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.
Abigail said:
Jan 11, 10 at 10:31 pmI have tested positive for TPO antibodies. I will request a TG antibodies on my next blood draw. Is that thyroglobulin antibodies?
LindaD said:
Jan 16, 10 at 8:42 amYes, TgAb is thyroglobulin antibodies.
If you are positive for TgAb, then your Tg will not be a reliable tumor marker for thyca.
Linda