I have Hashimotos which was diagnosed about 5 years ago. I started on Levo and after increasing my dosage, I felt worse. A friend of mine with Hashimotos suggested that I probably was not converting T4 to T3 and could try to take NDT because of the T3 in it. Luckily I found a doctor who prescribed it and have been steadily taking 150 mcg of NDT ERFA for 5 years with no problems until 2 months ago.
2 months ago, after taking my medication, I would start to notice a build up different reactions which got progressively worse over a three week period having (excruciating headaches, stomach issues, dizziness, brain fog, diarrhea and feeling weak). It felt like I was having hyperthyroid symptoms and maybe taking too much hormone. I stopped taking ERFA for 3 weeks and the side effects all stopped after that.
(I spoke to the ERFA manufacturer and asked them if anything had changed in their formula because this new batch I was taking tasted differently to me (normally there was never a flavor, and with this batch, it tasted a fake peach flavor). They, of course, said that their pills have been quality checked and they have had no complaints but there can be variability in the pills because it’s coming from animal sources so it can smell and taste differently on occasion). But up until now they have had no other complaints about this batch).
At that time when I stopped taking ERFA I got a blood test which showed:
TSH - <.01 (.27-4.2)
Free T4- 14.1 (10-26)
Total T3- 1.2 (1.3-3.1)
My doctor and I agreed that I was not overmedicating myself because these numbers were pretty decent. (My TSH has been <.01 for the last 4 years but Dr. Richard Shames, thyroid guru, and best selling author, told me in a consultation that if my T4 and T3 are within range and I am feeling good, that the TSH being so low is not really important as an indicator. It’s more important about how you feel and not to be worried too much about the TSH). In the meantime, we were thinking of alternatives to try and thought about trying synthetic thyroid pills again.
We figured out that my NDT ERFA dosage equivalent is about 98 mcg of T4 and about 24 mcg of T3. Instead of taking both T4 and T3 pills separately and trying to make adjustments to both at the same time, my doctor and I thought let’s first get one pill’s dosage correct and then add the second pill. I initially tried a cytomel T3 pill of 12.5 mcg, (thinking I was starting slow and taking half of what I normally had in my NDT dosage) and had a bad reaction on that first time. Then stopped taking that pill right away because the reaction was so heavy. But I didn’t know if the reaction was coming from the pill itself, the dosage, or the fact that i took it without the T4 pill.
Then we tried a new tactic. I tried to take Tirosint and on the first day it didn’t feel good at all. Then we tried for 3 weeks Euthyrox T4 and initially i started on on 88 mcg pill. On the 5th day I felt weird with a bad reaction- headache, and brain fog. I lowered my medication to every other day and took 44 mcg for the next 2 weeks. I saw my weight creeping up from 58 kg to 61 kg and didn’t feel that great at the end of the 2 weeks (I felt like I was getting weaker and had less energy and was freaked out about my weight gain- 3 kgs in 3 weeks 😱). After a blood test it showed :
TSH - 7.4 (.27-4.2)
Free T4- 13.3 (10-26)
Total T3- .8 (1.3-3.1)
My body is obviously not converting T4 to T3. And the lack of T3 was making things worse for me.
Then I started taking only 5 mcg. Of Cytomel- T3 for 4 days. On the 5th day I had a bad reaction with brain fog and stomach issues. I stopped taking the low dosage Cytomel.
Then because I am freaked out that I have to do something to get things under control, I started taking my old NDT that I suspect is from a bad batch but only one 30 mcg pill (1/5 of the dosage that I had been taking for years). On the 5th day I had a bad headache and some brain fog. I don’t know where to go from here. I think this is a bad batch but wonder if maybe I can’t tolerate any thyroid pills?
Lastly, to make things more complicated, I am also peri- menopausal and I know my estrogen and progesterone are also dropping because I am having hot flashes so all of my hormones are playing havoc and probably affecting one another.
(The new batch of Erfa NDT won’t be ready until end of September which is another month from now. I would like to try to see if I get the same reaction with a new batch of Erfa.)
Any advice as to where to go from here for those interested in a real puzzle? I know I haven’t tried the other NDT brands yet, but was maybe wondering if there was any way to figure things out using the Synthetic hormones and if not- what would be your next step to try?
Many thanks!!
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