Question on THS and atrophic thyroiditis

[Chrysali]

I hope you knowledgeable people can help me with learning more to assist me with advocating for my own health. On this forum, it is agreed that THS is not the sole marker on which to base treatment decisions. In the case of a thyroid which is chronically atrophied, is the TSH likely to be of even less relevance and can anybody point to any literature on the subject? Thanks in advance for any help.

[humanbean]

This link has info on atrophic thyroiditis in a mother and baby. It is worth reading even if your circumstances are different :

thyroidpatients.ca/2021/12/...

And this link has a bibliography on atrophic thyroiditis :

thyroidpatients.ca/2018/12/...

[Sunflower64]

There is no ’one size fits all’. I can only tell you about my own experience after living with AIT for more than 20 years (atrophic thyroiditis confirmed by ultrasound in late 2021). Diagnosed in 1999.

Over the years, I have tried literally everything: levo only, levo + T3, NDT, T3 monotherapy, NDT + T3, NDT + T4, thyroid glandulars alone and with levo…some did not work at all, some worked for a while and then I would crash. I gave up on doctors a long time ago and now self-medicate. Lately, I have noticed improvement and symptom-relief. This is how I did it:

When I was put on levo at the time of diagnosis, I was told to take 1.6 mcg per kg of body weight which in my case was 125 mcg of levo daily. That made my TSH look good but did not resolve symptoms.

Over the years, I have been told by various thyroid advocates that everyone needs T3, that NDT is the only viable option, that nobody can produce enough T3 on levo only once the thyroid gland is gone…but I never felt right on any T3+T4 combination, except initially. Then, I would feel worse. I now realise I have had symptoms of hyperthyroidism for years, but always put them down to adrenal fatigue, T3 pooling, rT3 dominance…

I then read that patients without a thyroid (incl. Ord’s disease) are likely to require 2 mcg of levo per kg of body weight rather than 1.6 mcg…so I figured I would need 175-188 mcg daily rather than 112-125 mcg…a big difference,

I have also corrected all nutritional deficiencies using the advice from members here…Vit D, selenium, zinc, magnesium, vits B, iron…it takes a while if you have been deficient for a long time.

I always felt that T3, both natural and synthetic, stressed my body and sent it into overdrive. Back then, I believed forums like the STTM and Ray Peat’s adrenal forum which tell you it is all about rT3 or adrenal fatigue. I tried adrenal glandulars and cortex and various supplements which only made me worse. I tried T3 only to ’flush out’ rT3 and crashed badly.

So, here I am, with an atrophied gland, taking levo only (2 mcg per kg of body weight) and doing much better. I get tired at night and sleep through the night ( no more tossing and turning and sweating), appetite has decreased (on any kind of T3, I was ravenous) my heart is no longer trying to claw its way out of my chest, hair loss has decreased, my skin is no longer itchy…for the first time in a long time, it feels like my body is no longer trying to run away from itself.

I should add that I was originally put on T3, NDT and adrenal support by a doctor, and then continued to experiment on my own when that did not work.

I have not had labs since going back on levo, but I don’t worry too much about my TSH as I know it fluctuates quite a bit in euthyroid individuals.

Sorry for this long account, but I wanted to say that it all comes down to what works for you as an individual. I read all the time here about people who get their life back on T3, and some need to be on T3 only; yet, any amount of T3 makes me sick when taken long-term. Which only shows how different we are, and that we all have to find out what works for us as individuals.

For me, taking more T4 than generally recommended did the trick. With optimal vitamin and mineral levels, my body seems able to convert enough T4 to T3…as long as I take enough T4 for my needs. I go by symptom-relief only. But, in the past, when on ca 2 mcg of T4 per kg of body weight, my TSH would fluctuate between 0.05 and 0.2. It has always been slightly below range when I feel optimal, so I go with how I feel. I never felt optimal on a TSH that made a doctor happy.

[Lunario in reply to Sunflower64]

I agree, it's a very individual journey. I also need T4 in the upper part of the reference range, but I do well by adding a tiny amount of T3.

Can you please tell me where you read about the 2 µg per kg of body weight? Even that wouldn't be enough for me, I'm just curious.

[Sunflower64 in reply to Lunario]

ncbi.nlm.nih.gov/pmc/articl...

Section ’Discussion’.

I disagree with doctors who distinguish between athyreotic patients (after surgical removal) and Hashimotos patients, as if the latter are always able to produce some hormones. I stupidly tried to come off meds after an ultrasound showed atrophic thyroiditis, after consulting with a doctor who claims AIT is reversible and that even atrophied glands can regrow. After a month off meds, my TSH had jumped from 0 to above 20, my FT4 was very low, about the amount you would expect to remain from the meds I had been taking…But there was no sign of my own thyroid kicking in to do anything. This convinced me of two things: (i) you cannot miraculously kick you own thyroid back to life and (ii) an atrophied gland may not produce any measurable amount of hormones even if it is ’still there’. I think too many doctors keep us on a lower than needed dose of levo, hoping our own thyroid gland will provide whatever else the body needs…in my own experience, it does not necessarily work like this as taking thyroid hormone hormone tends to suppress your own hormone production.

[Lunario in reply to Sunflower64]

I completely agree with you. I have had similar experiences.

At least they accept that we need individualized treatment. But the emphasis is on TSH and T4. Not a single word about the importance of fT3 (and I don't even mention conversion issues). They refer to another study (pubmed.ncbi.nlm.nih.gov/152... "Variations in adequate levothyroxine replacement therapy in patients with different causes of hypothyroidism".

As long as euthyroidism is only defined by TSH and fT4 being somewhere within a reference range, I doubt that all the statistical data collected will be of any use. This will only lead to continuing to treat the lab results and not the person sitting in front of them. Resulting in a lower dose than what would be really adequate.

If only our hormones were available over the counter (and at a reasonable price). Then we could just shrug our shoulders at the arbitrariness of some doctors...

[Chrysali in reply to Sunflower64]

Thanks so much for the detailed reply,which was an interesting read. There really are no hard and fast rules. You have given me a lot to think about