Reducing T3 - please help me understand

[jstein1979]

Hi all, I am baffled with my situation. I would be so grateful for any ideas.

First, after being extremely sick for over 5 years I was finally diagnosed with mold exposure early in 2023 and now being treated by a top specialist at Cleveland Clinic in the US. Making progress. This doc warned me my thyroid might improve as I'm being treated for mold (which treatment takes a year or longer!)

I have Hashimoto's. While I was so sick I became intolerant to T4 (Levothyroxine), so was able to take T3 and that is what I'm on now.

The chart above shows in April of 2023 my last doctor was NOT good with T3 and I ended up overmedicated taking 45mg a day. Per the Cleveland Clinic mold specialist, I started with a new endo and in the last 10 months I have slowly dropped my dose from 45mg to 17.5 mg and the FT3 continues to hover at the top of the range (2 - 4.4)! Is that crazy?? I drop my dose a little, feel like total hypo crap for a few weeks, then things level out for a month or so and I feel better (except for mold symptoms). But then I start feeling hyper again with hyper symptoms, do lab work and see I'm still hovering at the top of the range so I drop my dose another tiny bit and cycle repeats itself. I am still feeling like hypo crap from the last drop to 17.5. HOW ON EARTH can I drop my T3 dose that much but Free T3 is still hovering about the same place? Unless mold treatment really is helping thyroid as I am told it could.

Per my US endo I take my dose of T3 about 7am and do lab work exactly 8 hours later (he says 8 to 12 but I do 8). I know some folks will say that is too soon, but even if so shouldn't the Free T3 change as my dose has changed so much? D, Ferritin, Folate, etc. all in good shape.

Between the mold exposure and thyroid it has been a brutal 6 years wasted many thousands of dollars and over 30 doctors who were clueless (vast majority of MDs in US are know nothing about mold and we all know very few endos treat thyroid correctly) - had to quit my job of 40 years that I love 😥. I am hoping I can figure out this thyroid issue and keep detoxing from the mold exposure.

I am very grateful for anyone who might have any comment/input on my thyroid levels.

[greygoose]

Given that you have Hashi's, I would guess that the immune system's attacks on the thyroid have something to do with it.

[jstein1979 in reply to greygoose]

Thank you. My immune system is in constant high gear from mold it sees it as any other invader like a virus. I just don't understand how I can reduce meds so much w same lab results.

[greygoose in reply to jstein1979]

If your immune system is attacking your thyroid repeatedly, your thyroid hormone levels have more to do with the hormone leaked into the blood than your dose of T3.

When the immune system attacks the thyroid, the dying cells release their stock of hormone - T4 and T3 - into the blood, causing levels to increase. They can go quite high. If you're taking exogenous hormone at the same time, levels are going to be even higher. But reducing your dose is not going to reduce the level by any noticable amount. Try stopping your T3 for a while and see what happens. But, do it on your own, don't involve your doctor. Doctors just don't understand how Hashi's works.

[jstein1979 in reply to greygoose]

That is very interesting and I had not thought about that. So at some point when my immune system calms down and thyroid is attacked less things should be more stable and I see where I am needing meds at that point right?

[greygoose in reply to jstein1979]

Well, eventually your thyroid will be completely destroyed, so you won't have that problem anymore. But, unfortunately, there's no way of knowing how long that will take. In the meantime, we have to expect levels to fluctuate more or less.

[jstein1979 in reply to greygoose]

And let me ask is it generally rough when you do a decrease of meds? I mean as I've done these five microgram decreases I have several weeks where it is really tough with hypo symptoms very achy muscles and joints, extreme fatigue like falling asleep when I shouldn't!

[greygoose in reply to jstein1979]

I'm afraid I can't answer that because by the time I was diagnosed and started treatment, my thyroid was almost completely destroyed. I didn't know it at the time, but I had my last Hashi's 'hyper' swing when I was 50, but wasn't diagnosed until I was 55. It's all very individual, anyway. No two people experience it in the same way, I don't think.

[jstein1979 in reply to greygoose]

Thank you so much for your input I truly appreciate it. These are definitely hyper to hypo swings I'm dealing with thanks for helping me figure that out.

[greygoose in reply to jstein1979]

You're welcome.

[humanbean]

In the box where you write "Losing Hair, heart too fast, palps", all those symptoms could be caused by low iron and/or ferritin (iron stores).

Do you have any recent results for iron and ferritin? And what about Vitamin B12, folate and vitamin D? They are often low in people with hypothyroidism.

Do you take any supplements for vitamins and minerals? If yes, what are they?

Some things that might be low in some people with thyroid disease is selenium, zinc, and magnesium, but few people test them. In the case of magnesium only a small percentage is found in the bloodstream so tests are not really useful. If your kidneys are functional then they should excrete excess magnesium in your urine.

[jstein1979]

With the mold exposure and seeing a top functional MD doctor at the top Cleveland Clinic in the US we have looked at all the nutrients and really am good on all of those. I'm taking high-end forms of zinc, a, d, resolvins, and of course the mold protocol which is glutathione, binder and infrared sauna. I'm just really stumped over why my free T3 has stayed at the top end of the range as the dose has decreased so much. The mold doctor should be able to refer me to a doctor at Cleveland Clinic that can help with this!