Advice on levothyroxine/TSH stuff

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Just wanted to ask a question of you all that have experience dealing with hypo-

I was diagnosed with hypo by an endocrinologist I used to go to in late 2015. As you can see, I was at the endo for unrelated issues (referred for joint pain), and then at a follow up I was diagnosed with hypo as a result of the below TSH level in Nov 2015. I was having chronic fatigue at the time and some constipation and overall lethargy, as well as weak fingernails. For the record, my mother and father are both hypo; my mother takes 75 mcg and my father takes 25 mcg levothyroxine.

My endocrinologist kept increasing my dosage, and wanted me to take 75 mcg. I simply didn't see a reason to do that and he was treating me based on my TSH level solely. My symptoms felt better at 50 mcg. I got him to go in the middle with me and take 62.5 mg (50 one day, 75 mg the next). I have since not gone back to that endo due to the endo's office being under fire for insurance and billing illegalities, as well as just shady practices. My PCP has recommended that I drop back down to 50 mcg, which I am on now, and eventually try to go back to 25 mcg or even 37.5 mcg.

Free T3

3.97 pg/ml - Mar 2015 (no treatment)

4.14 pg/no - Nov 2015 (no treatment)

4.11 - April 2016 (25 mcg)

3.29 - July 2016 (50 mcg)

3.7 - May 2017 (62.5 mcg)

3.5 - July 2017 (62.5 mcg)

Free T4

1.78 pg/ml - Mar 2015 (no treatment)

1.50 pg/ml - Nov 2015 (no treatment)

1.3 - April 2016 (25 mcg)

1.32 July 2016 (50 mcg)

1.3 - May 2017 (62.5 mcg)

1.66- July 2017 (62.5 mcg)

TSH

1.988 - Mar 2015 (no treatment)

4.495 - Nov 2015 (no treatment)

4.571 - April 2016 (25 mcg)

3.260 - July 2016 (50 mcg)

3.2 - September 2016 (50 mcg)

1.19 - November 2016 (50 mcg)

2.36 - March 2017 (50 mcg)

1.21 - May 2017 (62.5 mcg)

1.630 - July 2017 (62.5 mcg)

Essentially, at this point I'm not sure whether to stick with mY PCP's orders, or go find a new endo, but I really just don't know and I'm hearing a million different thigns. Please let me know what you all think.

Have a great week

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5 Replies

  • Posted

    Well, I guess the question is, how are your symptoms at this point? If you felt good on 50 then why not stay with that? It seemed to have your TSH right about where most people think it needs to be.

    What's the motivation for wanting to go lower again on the dosage?

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    • Posted

      Doctor's instructions are to keep lower it more, just to clarify that. At this point I have no clue.

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  • Posted

    Hi Dan, awesome data! 

    One thing to keep in mind is that there is a lag time between treatment and results in bloodwork. You need at least three weeks, but three months for full effects. So the lag could explain a little of the drops. The other thing to consider is that there's variation in dosing, as much as 10% from label doses, one way or another, so every time you get a new prescriptionthere can be as much as 20% difference between lots. I found this completely frustrating. Lastly, caffeine, and sugar substitutes such as aspartame, can have an effect on thyroid function. 

    Looking at your results...  it's known that in the thyroid feedback loop, T4 is the main trigger that the pituitary responds to, in order to regulate the thyroid. Your results seems to indicate just this, that the T4 only treatment (levothyroxin) seems to suppress your pituitary's production of TSH and thus, the production of your own T4 disproportionately compared to the dose you're taking. Think of it as while you're adjusting to the meds and increasing them slowly, your own thyroxin levels are dropping. But there's a delay in all this. I. It is your TSH is still quite high. That's  noteworthy, as it should drop with the T4. Any chance you're skipping doses?

    My experience was that that levothyroxin was a placebo with side effects. I found it did have an effect on my blood work, but did not alleviate symptoms, and caused worse symptoms. In the end, I couldn't tell what was the hypothyroid and what was caused by the meds.

    My best recommendation is to find a REALLY good endocrinologist and see if they can make sense of your data. This isn't easy. I've been to more than a handful of docs for my thyroid disease, and was lucky to find one doctor who actually knew exactly how to calibrate the meds. 

    Its important that you do something to treat yoir thyroid disease. If you aren't finding the meds to be effective, try a natural bovine glandular and see if this helps. Also, there are many alternative treatments as well as supplements. Some help, some don't.

     

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  • Posted

    Ok cool. The thing I find so weird is my T4 and T3 haven't changed that significantly but the TSH is all over the place. I will try to find a better endo. My pcp is great but he doesn't seem super interested in the endo and basically just prescribes me whatever dosage based on my symptoms.

    I am very crazy about the dose and compliance, so that can't be the issue. My T3 and T4 look fine though, correct?

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  • Posted

    Dan, your data perfectly demonstrates the reason for thyroid patients' frustrations with traditional treatments. Fortunately, your doc ran more than just the TSH. What may have helped is a rT3 test throughout.

    T4 is the return feedback for pituitary production of TSH. So whenever you start or increase levo, it will show an initial dip in your TSH, but will often pop back up once things level out. It takes a full three months, which is why dosing is so difficult.

    The most important data points here are the first two. They tell you that your conversion from T4 to T3 is fine. And while your TSH increases, so does your T3. I honestly don't know what the normal fluctuations of T3 are. Your numbers don't seem to have drastic changes. However, notice, your T3 drops over time. Other than the constipation, are you having any gut health problems? I ask because gut health often parallels the level of conversion from T4 to T3. 

    Your symptoms may offer some clues as to whether your problem is T3 or T4. Low T4 typically has brainfog as a symptom, while low T3 has anxiety. Keep in mind, as your TSH drops, your own T4 is being replaced by the levo. But over time, the T3 should also increase, though not as much as the T4. But your T3 decreases. A possible reason for this is an exposure to heavy metals in the first six months, and a tapering off as your body slowly eliminates these heavy metals. Heavy metals such as mercury and bromine can result in high rT3, which inactivates T3. This could explain the reason for the slight increase at your second data point. 

    If heavy metals are the cause of your initial onset of hypothyroidism, you may want to consider a short term NDT regimin. NDT is a natural thyroxin derived from pig thyroid gland. The interesting thing is that it has a much higher amount of T3 than humans compared to T4. So for people with low T3 or high rT3, I think can offer some relief.

    My best suggestions are to have an endo look at your tests, run a test for rT3 with your next panel, and consider what factors were in play during the six months with the initial TSH spike. There is actually a formula that considers the ratios of T3 and rT3 to find whether this is problematic. As for the six month spike in TSH, were you super stressed? Did you change your lifestyle? Move? What factors may have contributed to the onset of your hypothyroidism? It may be that you can change something and help reverse the disiease progression.

     

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