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First Post - Latest blood results & seeking input on meds change

FallingInReverse profile image

This is my first post, and I am very excited and hopeful. I have added all my background in my profile. Here are some key points and my question.

* Diagnosed hypo/hashis 1 year ago

* T4 50 mcg daily cleared up all/most symptoms EXCEPT debilitating fatigue usually accompanied by brain fog (I still do get cold... but that's the least of my worries when I can't stay awake or function)

* GP (who is a good dr. but doesn't know much about thyroid) then reduced T4 to 25 mcg and ADDED 10 mgs T3 (5 mcg in the am & 5 mcg at night)

* I recently split the T3 into 3 (wake up (2.5), noon (2.5), bedtime (5)) when I noticed I was napping/falling asleep around 2 pm. (And I have been napping less at that time since)

Symptoms check: I am "better" but still bumping along the bottom, like chin right above water but doesn't take much for me to dip under. I am still generally fatigued and brain fog (but both are "better" than before). I am still taking compelled naps randomly, but fewer. Although every week or so I lose an entire day to fatigue and naps. I feel my old circadian rhythm trying to peek through -I am no longer passing out at 10 pm, rather around midnight like pre-diagnosis. Headaches are periodically regular but I am not sure at all the cause (allergy? thyroid? ??)

Side effect notes: I have had - and increasing with the T3 - chest/heart racing. Had them from the start on T4. Dr never warned me about them. I used to call them "chest shocks" and it feels like a rush of adrenaline in my heart. I am aware of what anxiety feels like now - pure physical/chemical not based on anything that's happening in reality. I think another dimension of this is how at times I can be equally exhausted but also feeling a buzz and part of me feels awake simultaneously.

THE ASK: I need to ask for my next med change. All blood test results are in my profile. Here are my thoughts from what I've read on this forum:

* I am guessing I need more T4. Am I right? How much should I go up to? I did the math and based on body weight (140-145 lbs) I could be at 100. (63.5 kgx1.6) how much do I add every 6-8 weeks until I can test again?

* I think my dr. should have considered giving me more T4 before he even added the T3. But here I am on T3 too. I feel like it's working... but maybe more F4 alone would work too.

- Do I have enough info to know if I am indeed a "poor converter"?

- Do I only change one thing at a time? Like - leave the T3 as is until a T4 change stabilizes? Or would I ever change the T3 at the same time (either up or down)?

Thank you for reading, and for your insights. This message board has completely changed my post-diagnosis life, and I am so grateful.

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FallingInReverse
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8 Replies
greygoose profile image
greygoose

Hi FallingInReverse, welcome to the forum. :)

What a great profile! Everything is there. But, all those blood test results are a bit confusing because most of them are useless. All you need is what you got with your latest blood tes:

SEP 11th 2023 Blood Test - redo:

TSH, ultrasenstive: 2.274 range 0.550 - 4.780 mIU/L

T4-Free: 0.76 range 0.89 - 1.76 ng/dL

T3-Free Tri Iodothyronin, Free: 3.1 range 2.3 - 4.2

So, your TSH is still too high. It should come down to about 1 or under. Yours is still saying that your pituitary is unhappy with the amount of thyroid hormone in your blood.

Your FT4 is below range, true. That might or might not be a problem. For some people that could be ok, others would need it higher. But, the only way you can find out if it's right for you is to try raising it a bit and see if it makes you feel better.

Your FT3 is only 42.11% through the range, which is still a bit low. Most people would need it at least over mid-range to feel well.

You should only change one thing at a time. If you change more than one you won't know which one made you feel better - or worse. Whether you try increasing T4 first or T3 is up to you, because I don't think we do have enough info to tell how well you convert. The only way is to have FT4 and FT3 tested at the same time when on T4 only, and compare them. And, I can't see any results that fit that criteria. So, we don't know! :)

Multi-vits are very much frowned on on this forum, for multiple reasons. One - and most important - because they usually contain iodine, which is an absolute no-no for hypos unless tested and found to be deficient. Two, because they usually contain iron which will block absorption of the other ingredients - iron should be taken on its own, at least two hours away from everything else except vit C, and four hours away from thyroid hormone.

What you need is to get the principle nutrients tested - vit D, vit B12, folate, ferritin - and supplement accordingly. We can help you with that. :)

FallingInReverse profile image
FallingInReverse in reply togreygoose

Oh thank you! The “re-do” test was me going back to my dr and saying - you did the wrong tests and these are the specific ones I need. All credit to this forum that I knew any of that! So empowering and so much hope to feel knowledgeable.

My plan then is to increase T4 from 25 to 50 mcgs a day and test again in 6 weeks. Sounds like a logical increase amount yes?

I will consider later at that time if I can try to simplify to a T4-only regimen, but don’t need to think about that for another 6 weeks anyway.

I am stopping those multivitamins immediately : )

As for D/B12/folate/ferritin - I had all but ferritin tested in June. Do I need to test them every time at the same time as I check my TSH/FT3/FT4?

So when I get my blood work every time I go, exactly which tests should I get all together each time?

greygoose profile image
greygoose in reply toFallingInReverse

My plan then is to increase T4 from 25 to 50 mcgs a day and test again in 6 weeks. Sounds like a logical increase amount yes?

That is the maximum you can increase. But, as you get nearer to your 'sweet-spot', you can - and probably should - increase by less. So, for now, that is the right thing to do.

As for D/B12/folate/ferritin - I had all but ferritin tested in June. Do I need to test them every time at the same time as I check my TSH/FT3/FT4?

Not every time, no. But, a couple of times a year. What were your results in June? Were they good? Bad? Indifferent?

So when I get my blood work every time I go, exactly which tests should I get all together each time?

Your six weekly retests, after a change in dose or brand of T4/T3 should consist of:

TSH

FT4

FT3.

:)

FallingInReverse profile image
FallingInReverse in reply togreygoose

June 2023:

B12: 652 range 180-914 PG/ML

Vit D, 25 OH: 79.4 range 30 - 100 ng/mL

Folate: 10.6 range > 6.59 NG/ML

Ferratin - not tested yet

The above reflects a D supplement, but no others (I had only just started the multi after these results and am stopping that today : ).)

I have older vitamin results (in profile) over the years, and I don’t know why these are so different.

If I am able to get these vitamins tested every time (ie, if insurance pays for them) should I just for the visibility?

greygoose profile image
greygoose in reply toFallingInReverse

If you can, yes, would be a good idea to keep an eye on them because hypos so often have low nutrient levels.

FallingInReverse profile image
FallingInReverse in reply togreygoose

Hi, a quick question, I’m 10 days into the increase from 25 to 50 mcgs of T4 and I feel zero improvement and possibly even more consistently tired.

If I’ve been working harder in the past couple weeks could that entirely counteract the meds benefit?

Does that make sense at all? Shouldn’t I start to feel even a little better by now?

tattybogle profile image
tattybogle

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FallingInReverse profile image
FallingInReverse in reply totattybogle

Hello! I am in the U.S. so it doesn’t look like I can?

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