10 Gray Areas about Thyroid Treatment and related issues: The Anomalies

Screen Shot 2015-09-01 at 2.34.02 PMEver heard of the word “anomaly“? It means that which deviates from what is standard, normal, or expected. You could also call it the “gray areas”.

And when you’ve observed and compiled thyroid patient experiences and wisdom as long as I have, one thing certainly stands out: though something may be true for the majority of thyroid patients, it may not be true for others.

Here are 10 of those anomalies when it comes to thyroid treatment and issues related – – all based on repeated observations: 

 

  1. HASHIMOTOS and GLUTEN:

    Though the majority of Hashimoto’s patients seem to need to be off gluten to control their antibodies and improve nutrient absorption, there have always been a small percentage of those who have never had problems with consuming gluten….ever.

    i.e. though their once-high antibodies revealed their Hashimotos state, eating gluten didn’t make them worse, nor did gluten consumption bring their antibodies back up after they had gotten them down due to a better thyroid treatment or use of iodine. (Yes, iodine use has helped many Hashi’s patients bring their antibodies down).

  2. SYNTHROID OR OTHER T4-ONLY MEDS:

    Though we’ve observed that the biggest body of Synthroid or T4-only users see the failure of their treatment either from the beginning or within the first few years (in their own degree and kind), there is a small percentage who may not see the failure for 15, 20 years or more, and an even smaller body who feel they never have problems from it (though they usually do and don’t recognize them as problems related to being forced to live for conversion alone).  

    Informed thyroid patients have observed that in fact, some T4-users convert to T3 (the active hormone), better than others…for awhile.  Other T4 users may never have needed treatment at all. My sister-in-law is an example. Her doctor once found her TSH was high, so he put her on Synthroid. She seemed to do fabulously for about 4 years. Then she stopped and was fine. Looking back, there’s a good possibility that chronic stress was pushing her cortisol high, which promotes a hypothyroid state and higher TSH…thus the appearance of thyroid disease. When the chronic stress is resolved, the “hypothyroid state” goes away.

  3. ADRENAL ISSUES:

    Though we’ve observed that at least 50% or more of thyroid patients end up with an adrenal problem due to being on the inadequate T4-only or other stressors to their adrenals, there is another body of patients who never seem to acquire adrenal problems yet had every stressful reason to. 

    Who knows why some escape it. My mother was on Synthroid her entire adult life and paid horrible prices, yet I saw no evidence of an adrenal problem. I was the same–had a million reasons to see my adrenals become sluggish, yet it didn’t happen. Something about our biological or genetic makeup in response to stress? Our way of handling stress? Supplements we took?

  4. HOW MUCH NDT CAN BE TOLERATED WITH LOW CORTISOL

    Though a large body of low cortisol patients can only tolerate “up to” 1 1/2 grains of NDT without having problems, if they go higher, they start to see either pooling of T3 or rising RT3. A smaller percentage can go much higher without noticeable issues, and another small percentage can’t even go as high as one grain without seeing those issues. But they are there.

    When one’s cortisol is a problem, especially when it’s too low, NDT at certain raises will reveal the low cortisol. i.e. NDT is not the problem; it’s revealing the problem via the raises. http://www.stopthethyroidmadness.com/ndt-doesnt-work-for-me

  5. WEIGHT GAIN:

    Though it appears the majority of thyroid patients will either gain easy and/or have trouble losing weight, there is a smaller minority with hypothyroidism who stay thin.

    There are so many possibilities as to why some hypothyroid patients stay thin, ranging from not being one who uses food to treat emotions…to all the genetic differences in how each of us burns fat or what one craves. http://www.theguardian.com/world/2012/jul/17/food-metabolism-calories-obesity-diet

  6. WOMEN VS MEN AND HYPOTHYROIDISM

    Though the majority of hypothyroid sufferers appear to be women, there are a body of men who will find themselves in a hypothyroid and/or adrenal state, as well. 

    There is speculation that because of women’s hormonal changes, it makes them more susceptible to having a thyroid problem. But men get thyroid problems, too, so the problems of toxins in our environment and/or low iodine may be other issues affecting both males and females, even if females with their hormonal issues get it more often.

  7. OPTIMAL AMOUNTS OF NATURAL DESICCATED THYROID (NDT)

    Though it appears that a large body of thyroid patients, when optimal, end up in the upper two grain area AND HIGHER…there is a much smaller body who are even higher than the 3-5 grain area, and the very minority are optimal less than 2 grains. 

    If a line is drawn with the least amount of NDT on the left, and the highest amount of NDT on the right, and with a dot representing each person on an optimal amount of NDT, the majority of dots start to fall in the upper 2 grain area and into the 3 grain area. A lesser amount of dots fall in the 4-5 grains area, and fewer dots are higher. Same with the other direction, Much lesser dots are in the lower 2 grains area, and even less in the 1-2 grain area. Of course, this observation is only true when participants understand what “optimal” really means (which many do not) and is explained on the Natural Thyroid 101 page.

  8. DOCTORS

    Though patients have reported over the years that the majority of their doctors are overtly clueless about either diagnosing or correctly treating their thyroid disease, there are a small and growing percentage of medical professionals who are bucking the trend and taking the time to listen to informed patients and Stop the Thyroid Madness, both website and books

    And honestly, we all play a role in strengthening that trend by politely yet confidently being your own best advocate, learning what patients have learned, and having the courage to explain it to your doctor, besides make it clear that “this” is how you want to do “that”. If a doctor will not listen, we put our money into the hands of those who will. A doctor works for YOU, not you for him or her. Here’s how to find a good doc.

  9. PROGESTERONE

    Though many (not all) females see their sex hormones mess up in conjunction with having hypothyroidism…and thus, can need progesterone supplementation to counter estrogen, there is a risk of having the progesterone convert to too much cortisol and causing miserable symptoms of high cortisol!

    In the hormonal pathway of conversions, there are some who convert progesterone to cortisol far easier than others. So each person has to figure out how much progesterone they can handle, which is probably individual. If cortisol is low, though, progesterone converting to cortisol can be a slight boon! 🙂

  10. ACID REFLUX/GERD

    Though it’s very common for doctors to prescribe acid reducers like Prilosec or over-the-counter antacids like Tums for your GERD or Acid Reflux….in reality for thyroid patients, turns out they have LOW stomach acid causing the reflux, not high. 

    Though antacids will seem to relieve the symptoms, it’s actually making the low stomach acid now worse, which in turn makes your ability to absorb nurtrients worse. Read about this issue right here: http://www.stopthethyroidmadness.com/stomach-acid

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80 Responses to “10 Gray Areas about Thyroid Treatment and related issues: The Anomalies”

  1. Mary

    Thank you!

    Reply
  2. Andrea

    Janie, you were right about my adrenals. It took me going to see a doctor at a UNIVERSITY run medical clinic to really help me. I found her at Duke but she has transferred over to Wake Forrest and I am following her. I am on prescription medication for the adrenal insufficiency. I have been told to get a medical alert bracelet for it which I am in the process of doing. But as for the stressor in my life, my autism, there is no way to be rid of it.

    Reply
  3. joan

    My tsh is at 9.09 and my T4 is .09 whilst in hospital that is the only thyroid they checked do you have any suggestions years ago I was on Armour until they messed with it and then naturethroid stopped for the same reason side effects thanks for any suggestions I must have loaned the book out to some one who never brought it back.

    Reply
  4. Ant

    Yes! Regarding #7: I am at 9 grains a day and could go higher next month. It has taken me over a year, I still have not reached optimal levels, but feel so much better thanks to STTM!

    Reply
    • Janie Bowthorpe

      Ant, sounds like you have classic thyroid hormone resistance. Patients in your shoes start adding direct T3 to their NDT, I know. Glad you found STTM.

      Reply
  5. Pat

    I am happy on 3 1/2 to 4 grains NDT but about every 3 months I run into an rt3 overload & have to back off on the NDT and add a compounded t3. I can alays tell when I am collecting too much RT3 cuz I gain wright & my face & tummy get puffy. I have added iron but wonder if I should add iodine. I was able to get off prylosec about 2 years ago by using apple cider vinegar in water at meals but it came back with a vangence about 6 months ago. I’m taking digestive enzymes & Probiotics.

    Reply
    • Janie Bowthorpe

      Pat, three potential causes for buildup of RT3: 1) being on too much NDT, which would also push FT4 too high in the range 2) low iron 3) high or low cortisol.

      Reply
  6. Margaret

    If adrenals are slightly thickened, is that from high cortisol ? Can it be reversed ?

    Reply
    • Janie Bowthorpe

      Sounds like a good topic to do an internet search for. One cause can be underproducing adrenals, which doing a 24 hour adrenal saliva test can reveal.

      Reply
  7. Emily

    What about people like me who have hypothyroidism and a full, thick head of hair with only a small handful lost in the shower?!

    Reply
  8. Carlissa brown

    I’m currently on 2 grains of nature-throid. I take am adrenal supplement as well thst is made be the same company that makes naturethroid. My last bloodwork came back with a ft3 of 3.2 and tsh of 0.067. I felt horrible still and I was sure that my doc would raise me but he said no. He wanted to test my iron. My ferritin came back at 30 and he started me on slow release iron tablets. I felt much better. He also wanted me to start taking progesterone as well on days 15 through 25 of my cycle. What I’m concerned about is he didn’t run the tests for cortisol or progesterone. How long would it need to be off of the adrenal supplement to do the cortisol saliva test myself?

    Reply
  9. susan shindelka

    Whow. I think I have 90%of your symptoms. I am65, been on synthroid 20 years. I love and suffer a lot.can’t walk too well, constant chronic joint pain,fiber. Arthritis,although could be just joint pain or problem with my thyroid. I am now on 1 mg for hypothyroid. I am constipated have IBS acid reflex, am unable to exercise,because of feet and awful chronic muscle pain. I am very thing but have a ,oesteoporis, have a huge belly.sooo cold…Sneeze from slight cold breeze. I am sedentary because of all my problems and my thinking I need to go in a care facility in June and after reading G your website feel its all thyroid. I have a feeling tho that medical tests will all show Ihave good amounts of thrroid. I think I need Dr.s prescription to get armour off internet co. Please advise.Canada drs won’t go along with anything different and that bothers me,maybe a naturopath. Do you know of one near here,penticton. Please advise . I don’t like to appear negative but my health is so run down. I want to get this hopeless situations over with.

    Reply
    • Janie Bowthorpe

      Susan, there’s a good chance that the majority of your symptoms are due to being on the inadequate Synthroid. And you have every right to feel negative about it all. Patients who can’t get a prescription will do an internet search for this: ThyroGold. You’ll need to make sure you have optimal iron, as well (See the labs needed here: http://www.stopthethyroidmadness.com/ferritin plus where your results need to fall), and hopefully your cortisol levels are good.

      Reply
  10. Colleen

    I’m 3 months post thyroidectomy, and Synthroid is killing me! I was super hyperactive with a large goiter before surgery. Now every little raise in Synthroid gives me more heart palpitations and hyper symptoms than ever. I test very low for the T3/T4 and very high for TSH. We tried adding extra T3 only and it made me feel crazy hyper, yet I’m still exhausted! Will NDT work for someone like me who has such a bad reaction to T3 only or Synthroid in general?

    Reply
  11. Joan Fitler

    Hi Janie,
    I just recently just over a week ago had some labs done. Tsh 2.65 the range (0.47-4.68), T3 free was 5.8 HIGH in the range (2.8-5.3),
    and T4 0.66 LOW in the range (0.78-2.19). I use a traditional doctor and also a nature path who is not available.
    My tradition Dr said go ahead and continue on the 1 grain of Thyroid NP. The labs were drawn after a 12 hr fast BUT with usual dose of Thyroid NP sub-lingual in the morning an hour before labs because Dr said take meds as usual. Now here is the clincher, I thought my vitamins or something were making my head feel slightly light headed or foggy but THIS morning I was feeling great UNTIL I took my Thyroid NP, then I got a bit achie and slight blurrie vision. This is a fairly new batch of Thyroid NP 1 grain that I received from the pharmacy. I don’t know if perhaps the hypothyroid has been healed and I don’t need it or if Acella changed their batch. Do you have any insight to any of this? And yes, I am still TIRED. Please advise 🙂 Thank you

    Reply
  12. margaret

    Hello, please hope someone can help. I have hypothyroidism, let me start with also informing you that I do work, but do not make enough to buy insurance, so I am on a medical card. I have asked my doctor for an adrenal test, flat out told me no, and normally will only check my thyroid once a year. Since having my fifth child 10 months ago and breastfeeding, my thyroid is having problems so they raised my levothyroxine, but I still having lots of symptoms. Im sure I have cortisol issues I have 5 kids and the baby is still not sleeping all night, besides work, and help take care of my exhusband who is diabetes and kidney failure keeps getting denied disability with 4 eye surgeries, and 5 foot surgeries, kidney failure, so he does a paper route just to make some money,which I then have to do when hes in hospital,on top of my own job, kids, and a baby. I feel most days there is not enough me to do everything I have to do. Somedays are so bad with the baby crying and being reluctant on taking a bottle or sippy cup that the babysitter has to bring baby to me to nurse, interrupting me at work, otherwise I would have to quit cause hes a screamer. Lucky I got a good job in that aspect. Anyhow besides doc not doing adrenal and pretty sure he hasn’t checked cortisol,he won’t do natural thyroid only the levo or as yous know it synthroid as far a thyroid symptoms has flat out told me to suck it up, cause being on artificial thyroid med does not replace all the thyroid function. I did ask to see an endo but he said he would not refer me. So I’m asking what do I do or who would take me with being on a medical card.I seriously have too much going on in life, and don’t have time for my thyroid problem.

    Reply
  13. Bea

    I have been on 4 grains West P for six months.My muscles have become severely fatigued and painful! My doctor suggested lowering my WP to 1.5 grains and adding in a small amount of T3.Should I take ALL the WP(1.5) in the A.M and multi dose the T3 later in the day(afternoon/bedtime)? I am so confused.Or should I just lower my WP by 1/2 grain at a time to see if symptoms subside before starting to add T3?

    Reply
    • Janie Bowthorpe

      Bea, the problem with giving you feedback based on our experiences and wisdom is that we don’t know if the 4 grains was over-dosing you or wasn’t enough.

      When on an optimal amount of NDT, our free T3 is towards the top of the range and our FT4 is around mid-range. When a dose has raised both of those too high, we just go down a bit and no, we don’t add in T3.

      On the other side of the coin, if you have an adrenal problem or low iron, then we lower the NDT and add in T3.

      Reply
  14. Robyn

    i have been hypothyroid since 1991. Total thyroidectomy in 91.
    i still after all these years do not understand any of it.. lol
    i am on Armour now after years of being on levoxyl and synthroid… i am tsh and t4 of 4.18, my dr just put me on 120 armour three days a week and 90 on the other days. because there is no 100. how does it work?? if my tsh is high then i am more hypo and my med gets raised? I also get more tired when the tsh/t4 is high? my dr has explained several times, but my memory sucks..

    Reply
  15. DancerMom

    Hi Janie! Thanks so much for your comprehensive website. Amazingly helpful! I have a question. Do people who get their iodine levels corrected and/or have been on ndt til they feel optimal health ever go off these supplements and are considered healed? Or if you use ndt or other treatments for hypothyroidism are you pretty much locked in for life? Just curious and can find no other information on the subject. Thank you in advance for any information you can share!

    Reply
    • Janie Bowthorpe

      Hi Dancer Mom. It’s honestly very rare to hear of anyone who was able to get off meds due to iodine use, though I believe a small minority say they have. And it’s even more rare that anyone has been able to get off NDT once optimal. NDT doesn’t “heal” one’s hypo. It simply gives back the thyroid hormones that aren’t being given naturally. Finally, I am aware of someone who was put on the lousy Synthroid, then got off and stayed off about 3 – 4 years later. Why? Because her high TSH only initially occurred due to chronic high stress (chronic stress raises cortisol, and high cortisol causes excess RT3, the inactive hormone). She resolved her stress and didn’t need thyroid anymore. Her thyroid was always fine.

      Reply
  16. Pam Doser

    I had my thyroid removed in 2008- floundered around with endos for a few months and found Amour thyroid- switched to Naturthroid when Amour changed its formula a number of years ago. Since heard from a good endo that they don’t remove Papillary tumors anymore cause they are so slow growing and ubiquitous. My question: Is anyone concerned about all the hormones, antibiotics and conditions of the pigs used for our meds? I’m not sure there is much of an alternative, but I’m wondering what I am putting in my body. I was recently diagnosed with very very thick blood- can’t figure it out- otherwise very very healthy. Could it be all the stuff given to pigs? Has anyone else experienced this?

    Reply
  17. Dee

    I started seeing a functional medicine doctor in May 2015 after 10 years of worsening low energy, emotional flatness and brain fog. Basically living in survival mode. I have always ate healthy, exercised. I am 60, 5’6″, 140#. She had me take an adrenal support, DHEA, pregnenolone, progesterone, estrodil patch, digestive enzymes, probiotic, and a strong multi-vitamin, no dairy or gluten. I felt much better in July and part of August, but now I am back to tired, emotionally flat, achy, foggy. My TSH is 2.27, T4 1.2, T3 3.4. Now she wants me to try a low does of Armour or Naturethoid, but warned I would feel worse for a while. I can barely make it through my work day now and I am desperate to feel better. What do you think, do I need adrenal hydrocortisone or should I try thyroid support?

    Reply
    • Janie Bowthorpe

      Hi Dee. Sorry that you are struggling. The best way to know about our adrenals, we have learned repeatedly, is by doing a 24 hour adrenal saliva test. Not blood. Saliva. A lot of folks order their own. Several places are listed here: http://www.stopthethyroidmadness.com/recommended-labwork As far as thyroid, can’t say. You didn’t say if those were free T3 and free T4, nor the ranges. But if your doc thinks so, thus mentioning NDT, sounds like a great idea. But….you probably need to teach her how to dose it, which isn’t just about “low doses”: http://www.stopthethyroidmadness.com/natural-thyroid-101

      Reply
      • Dee

        Janie, I had a saliva test in May, my numbers were in range, a little elevated in am, DHEA was very low in relation to cortisol, 61, DHEA 7-9am 52. Adrenal fatigue diagnosed. Her are my thyroid numbers: My FreeT4 is 1.2 and my FreeT3 is 3.4 and my T3 Reverse is 18 and Pregnenolone is 20. What dose of Armour should I start on? Is NpThyroid better? I am desperate to have some energy, better focus and motivation, like I did in July. I am self employed and falling way behind. Do you know why I would feel so much better for a while and then worse again? Thanks so much for your reply!

        Reply
  18. Amy Kate

    I’ve struggled with depression and anxiety for 14 years, and have been on psychiatric medications for most of that time. I’ve also been given a bipolar diagnosis. I was recently diagnosed with hypothyroidism by a good doctor, who is working on lowering my Levothyroxine (to eventually switch me over to NDT) and also adding in T3. However, the T3 makes me more depressed, and after raising it to 12.5 mcg I started feeling hyper symptoms and eventually had to stop it completely. The doc checked my adrenals and said they were fine but put me on pregnenolone and DHEA for extra support. I’m wondering what interaction the psychiatric meds could possibly have with the thyroid meds. Should I get them out of my system first before moving forward with the T3?
    I’m also wondering if these psychiatric meds (or something else) cause me to have an opposite reaction from what’s intended. For example, my stomach has become increasingly sensitive over the past few years (leaky gut) and when I take Vitamin D (or almost any vitamin or supplement) it causes me to become constipated. The doctor also tried to put me on low dose Naltrexone and again the same thing happened and I had to stop. So when I try to take supplements that I’m deficient in that I know my body needs I end up having to stop because I have a bad reaction. Has this happened to anyone else?

    Reply
  19. Claire

    On ndt…(been on synthetic prior), feel best at 4 1/2 grains NEVER shaky, no racing heart, but test (the right ones)’show I’m too high…any chance some feel best when showing signs of hyperthyroidism? Is there an okay level that might be too high but not showing the negative affects? Oh and I have hashimotos.

    Reply
    • Janie Bowthorpe

      Hi Claire. You didn’t say which test is saying you are too high. If it’s because of your TSH, it’s very normal for our TSH to go way below range without being hyper. We’ve seen that a lot in each other! Doctors don’t understand that, and are comparing that low TSH to the low on achieved with Graves disease. It is NOT the same thing. Our low TSH is due to us taking over the job of the natural TSH in the body by the amount of NDT we take to be optimal. If you are referring to FT3, this is where individuality comes in—some like me, have a Free T3 in the very upper part of the range when I’m optimal, while others might be slightly over range when they are optimal.

      We’re discovered that the telling lab about being overdosed is the Free T4! If the range goes up to 1.7, and we are OVER 1.4 (such as 1.5 etc), we are usually on too much NDT. How did we figure that out? Because our RT3, the inactive hormone, started to climb. I personally overdosed last year by 1/2 grain, which put my FT4 at 1.5…and bingo, my RT3 went up, up!!

      Reply
  20. Paul

    Hi Janie, I’m a retired airline pilot. For the last year I have been a mess. Found out I had sleep apnea (API 81-severe) and now on a cpap. I was told that apnea causes the brain to release adrenaline to wake you up when you stop breathing. I was waking up over 500 times a night and was constantly exhausted during the day. I also had a stressful job. I’m sleeping better now and my pulmonary doctor told me I would lose weight and blood pressure would come down. It hasn’t. I’m 80 pounds overweight. I plan on getting my cortisol levels checked as soon as possible. Think I have adrenal fatigue from the apnea. Also my TSH is 1.2, free T4 at 1.18 and freeT3 at 2.5 (towards low end of scale. AntiTAb<1.0 and Thy(TPO) <5. Morning basal body temps are averaging 97.0. Cholesterol levels good (I take 10mg Lipitor/day). Triglyclerides and blood sugar high, but A1C is good. I take supplements and although I take 5000IU vitamin D/day, my blood tests indicate I'm low on vitamin D3 (19). Testosterone way low. I'm tired and ache all over. On a diet and getting exercise. The question is: Where do I start my treatment plan or do I do it all at once? I need to up my D , testosterone levels. If my cortisol levels are low, do I do that too? What do I do first? My primary care physician resists alternative methods. Had to tell her no to blood pressure meds until I got a sleep study to confirm apnea. Suggestions welcome. PS I have all your books as well as Broda Barnes and Mark Starr

    Reply
    • Janie Bowthorpe

      Hi Paul. Believe it or not, there is a possibility that it’s the other way around—that the apnea is caused by having a cortisol problem. Some patients have reported that. But doing the 24 hour adrenal saliva test will give a clue, not blood, then would treatment for a cortisol issue. There is an adrenal group called FTPO Adrenals, and/or you when you get the results back, a good way to get deeper understanding is a coaching call: http://www.stopthethyroidmadness.com/coaching-call/

      Reply
      • chris

        Hi Janie, very impressed with your knowledge you have acquired, thank you for that. Quick synopsis. 58 yrs. young female, been diagnosed hypo 26 years. Tried every thyroid cocktail imaginable, at least twice. Currently have no educated doc, with no hopes of one for this area, So it is up to me. On NP 30 and 56 T4, been on every dose of both looking for balance and calm. When started out on the 60 NP, felt mentally so much better, had some hypo symptoms, but mentally good is so refreshing, didn’t know I was depressed. Tried to increase to 75 NP first, noticed the depression set back in, upped to 90 NP, anxiety, achiness. In reading your article on STTM, need to address iron, D, or adrenals. In your opinion, in taking the 30 Np and 56 T3, does more T4 push down the T3 level, cause right now it is zero, and 25% T4, And what would cause this drop in T3 when I am actually taking 4.5 in the NP. And one last question, Janie, could you be my doc…..oh how nice that would be.

        Reply
        • Janie Bowthorpe

          Hi Chris. Based on what you said happened when you raised NDT, your answer is probably right here: http://www.stopthethyroidmadness.com/ndt-doesnt-work-for-me i.e. the low T3 is probably because you are making too much RT3 due to what is mentioned on the above page about your adrenals and/or iron.

          And you’re not the first one who asked if I could be their doctor. lol. The funny thing is that I have always had an aversion to being in the medical field in any form…never, ever, ever wanted to be in that field. But in this field…which is an activism in gathering solid patient experiences and wisdom to inspire and educate towards better treatment, I’m good. 🙂

          Reply
          • chris

            Thank you so much Janie, while I understand your aversion, I so appreciate you being an advocate and truly an inspiration for this disease, lending hope and faith when both have been zapped. I enjoy the STTM site, and have learned much. So on to iron testing and adrenals.

  21. Nancy

    Janie,
    Thanks so much for this incredible site and helping us understand these complex relationships. I am certainly in this group somewhere – trying to figure that out.

    I led a FM / CFS support group 13 years – was in clinical diagnostic microbiology early in my career. Learned a few things: It is appreciated that Epstein- Barr virus can attack the thyroid gland.
    A new ‘form’ of this virus seemed to pass through the population in the 1980s.
    Also, there is a GI issue called bowel malrotation/ malattachment that may be fairly common in this group. A long, redundant colon may be a variation of this. I spoke with one person who no longer needed thyroid supplement ( after being on it many years) after having surgery to correct her colon.
    I am in the long, redundant, tortuous colon group and have wondered for years what role this structural issue may be playing in chronic health problems. It may be common in families who have scoliosis, as mine does.

    Thanks, again!

    Reply
    • Stephanie

      Interesting – do you know the details of that form of EBV? I have long suspected that I had it around 1990. I felt terrible and my lymph nodes in my neck became visibly and drastically swollen. The doctor did not know what it was – he thought maybe mono, but then it went away in about a week, so it didn’t seem to be mono. I now have hashimoto’s.

      Reply
  22. Kelly

    After 8 years of staying on top of Hashi’s w/ med’s & supplements, 5 months ago I was told I had no adrenals working & yesterday that I’m in early menopause because my sex hormones are no existent. I’m taking 105 Armour daily. What should my next steps be?

    Reply
    • Janie Bowthorpe

      Oh no, Kelly! Did you do a 24 hour adrenal saliva test? Patients have found that test to be extremely good over blood. And is it possibly you have hypopituitary which is not releasing the ACTH to the adrenals, or the FSH or LH for sex hormones?

      Reply
  23. Theodore

    This is excellent information that I will give to my wife.

    Reply
  24. Julia

    I am so desperate, I was able to get my PCP to put me on NDT but she’s very skittish about raising my dosage. She’s had me on 1 grain for almost a year and I’m still suffering all of my thyroid symptoms, if anything they’re getting worse. +60 lbs in one year, had my adrenals checked and the lab-obsessed endo I had to wait four months to see says I am “totally normal.” Chronically low FT4, FT3 of 3.5, TSH usually around 0.8 but swung up to 2.5 after 5mcg of Cytomel (which provides no symptom relief). I cannot get anyone to prescribe an optimal dosage for me or even anything close and I’m at the end of my rope with all of this, for some reason the Yahoo! group won’t let me join it, and I cannot find anyone locally who is willing to treat me and my symptoms, not a set of pointless numbers.

    Reply
    • Janie Bowthorpe

      Hi Julia. Either of the Yahoo groups will let you in, but you have to state why you want in. If it’s the European group, you have to state where you are in Europe and why you want in, too.

      Reply
      • Julia

        It’s Yahoo! that’s complaining about it. It says something about needing to link my email address to an account? But then gives me no options to do anything like that, it just cycles me back to a login page and when I try to join again, I get the same message.

        So, I literally can’t even get as far as saying why I want to join.

        Reply
  25. Linda

    Julia,

    It seems to be a Yahoo issue. We have others who cannot get into the group. It is often because they are joining with an account other than yahoo. See if you can make a yahoo ID and try to join with that.

    Reply
  26. Holly

    I have an unusual thyroid lab test and my doctor can’t figure out why and I can’t find anything about it. I am a Hashimoto’s patient who has been on Nature-Throid for years, recently I was on 1.75 grains. My last lab test came back where my TSH was low at .39, my free T4 was low at .9 but my free T3 was way high at 6.3. Doc wanted to put me on levoxythyrine but I refused because last time an endo tried prescribing me that I broke out in hives. This has been a problem for me for a while, low T4 and high T3. I had another doctor who said don’t worry about low T4. Current doc reduced my dose of Naturethroid to 1.5 grains to see if we could bring the T3 down. Haven’t got those lab tests back yet. I feel better having cut back my dose, I was having trouble sleeping. Is it a big deal if free T4 is low? As long as there is enough T3 in the system isn’t all that matters?

    Reply
  27. Tammy Bryan

    Hi there! I am so thankful for you!! I am feeling so sick lately, I do have Hashimoto’s. I have been on naturethyroid since January 2015, before on synthroid. My labs FT4 0.61 Range 58-1.64 FT3 is 2.4 Range 2.1-3.7 TSH 0.23 Range 0.34-5.60. My body aches can’t sleep well very tired my body is swollen and eyes swollen and dryness, hair is falling out I am thinking I am not on enough of my meds but my TSH is so low I take 130 in the morning and 32 in the afternoon which I have a hard time taking because of taking my vitamins please any suggestions.

    Reply
  28. Tala

    I have your books – thank you for all you do to help others. My son (21) is experiencing debilitating fatigue; he is losing his hair, has brain fog, can’t get going in the morning regardless of hours of sleep; and is really struggling with lack of motivation and depressed mood, though he is actually (formerly?) a highly motivated and academically successful, athletic, university student. He takes 12.5mcg T4, 60 mcg T3 (divided morning, mid-day, early evening), 35mg HC divided doses, 25mg DHEA and several supplemental vitamins, minerals, EFA’s, with a good whole food, GF diet. Latest labs (11/2015) TSH .02 (.40-4.5), FT4 .5 (.8-1.8), FT3 3.9 (2.3-4.2) RT3 <5 (98-25), B12 1342 (200-1100), Ferritin 111 (20-345), DHEA S 374 (24-357), Testosterone 723 (250-1100) FTestosterone 107 (35-155). He is losing hope. What can we do?

    Reply
  29. Tala

    Thank you for those thoughts, Janie. I so want to find the solution to helping him feel better. He is on HC, which I thought would invalidate any adrenal saliva testing? He does not supplement B12, just eats grass-fed meats. I wondered about MTFHR, but homocysteine labs always come up right in the middle of the range, [11/2015 it was 8 (0-15)], so his NP doesn’t think MTFHR is a factor. I just checked his labs and they didn’t run the full iron panel this time, but last time the results were: Total iron 67(50-195), TIBC 295(261-497), % sat 23 (20-50%), Ferritin 119 (22-187).

    Reply
    • Janie Bowthorpe

      Ah, I didn’t realize he was already on HC. If so, you two need to read and study Chapter 6 in the revised STTM book on the correct way patients learned to use it—all based on patient experiences and wisdom and via a lot of study and working with a few wonderfully informed doctors. Hopefully he has an open-minded doctor he can work with concerning all of it.

      I wouldn’t discount MTHFR. We often see a high B12 with it.

      And voila, his iron is WAY too low based on our observations. When men are optimal, we see the 130’s at the least and % Sat is in the upper 30’s as well. His ferritin of 119 “may” mean he’s got some inflammation because usually, it wouldn’t appear that optimal when serum iron is that low…again, based on observation and study, not a diagnosis.

      Reply
  30. Tala

    Thank you! As I was typing those numbers in I thought they seemed off. Will definitely re-read Chapter 6 and look further into MTHFR. I can ask NP for scripts for a current full iron panel and some inflammation markers – is there anything we should request other than HsCRP. In the meantime, I had a thought of maybe moving some of his T3 to bedtime? Also wondered if iodine would factor in to any of this? Thank you again for all you do. I have recommended your book to several friends and even purchased an extra to give to a hormone doc when the revised edition came out.

    Reply
    • Janie Bowthorpe

      Yes, some patients have reported feeling good benefit from a small amount of T3 at bedtime. CRP and ESR are known inflammation labs. Glad the book has helped!

      Reply
    • Janie Bowthorpe

      Some patients do report that a small amount of T3 at bedtime helped. It seems individual because for others, it’s too stimulatory against sleep. He’d have to see. Iodine may or may not factor in, we’ve noted.

      Reply
  31. Regena

    Question… I have hashimoto’s. I went Gluten free, will this cause me to absorb levo better and have to decrease my dose? I started feeling over medicated.

    Reply
    • Janie Bowthorpe

      Since gluten can damage the small intestine and thus cause absorption problems with nutrients, I guess it’s feasible that it could interfere with levo absorption. So perhaps removing gluten did improve the absorption. Just a guess. Have you looked into Natural Desiccated Thyroid? It gives all five thyroid hormones instead of the one you are on. 🙂

      Reply
      • Regena

        I have been Hypothyroid for 13 years and been on Levo. Started NT at the end of august. Told i had Hashimoto’s September first. So i went gluten free. I did well on NT till last increase to equal my levo dose. i took 3 of the upped NT and (11-17-15) i had, what i call a panic attack. Heart paps, shaking, full blown hyperthyroidism episode!
        After trying to get back to where i started went back to Levo, the last dose i was on. I still having heart paps and cold hands and feet. Just not feeling well. Staying gluten free.

        Reply
  32. Hadassah

    Dear Janie , I’m on 100mcg of Synthroid (T4) and I started taking T3 I’m at 20-25 mcg a day in divided doses . How much more can I take without going over board . I’m feeling better but not yet 100% myself . My energy is a bit better my brain fog is better muscle cramping is almost all gone . But working out is still an effort . I’m doing this protocol for a few days only . Do I wait to raise the T3 and at what point do I raise it ? THANK YOU FOR THE EMPOWERMENT AND INFORMATION , Hadassah

    Reply
  33. Hadassah

    Hello Janie , I keep reading your books over and over again . It’s a TREASURE . Do you have another book in the making for us ? Janie I was recently lowered with my Synthroid to 88mcg from 100mcg and I take T3 (Liothyronine) about 27.5 mcg in divided doses through the day . I was wondering what is the lowest dose of Synthroid can I go to safely ? And how much of the T3 can I I raise ? Thank you for you very much for your honesty compassion and valuable knowledge .” KNOLEDGE IS POWER “

    Reply
    • Janie Bowthorpe

      The answer about the lowest dose is taking no Synthroid. Some people are on T3 only. But it’s a rougher treatment when you have no T4 converting to T3 for you.

      As far as T3, people report it’s towards the top on labwork when they are feeling great.

      Reply
  34. Hadassah

    Janie , But the desiccated hormone has T4 . Don’t we need some T4 ? I thought we treat Synthroid T4 like desiccated hormone .

    Reply

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