My Hypothyroid Journey: I was diagnosed with... - Thyroid UK

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My Hypothyroid Journey

ResearchIsGreat profile image
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I was diagnosed with hypothyroidism over a year ago. Initially I was given Armour Thyroid by my Primary Care Physician. Dosage was 25 mg I think. Didn't see improvement so I asked her to test my iodine levels. My iodine was low. Started myself on a kelp supplement along with selenium and zinc. My PCP referred me to an endocrinologist. He commented that normally they don't check iodine levels. Don't know why since the thyroid needs iodine to make thyroid hormones. Anyway, I didn't go back to see him. Saw another doctor who changed my med to levothyroxine 75 mg. My tsh went below normal. He said my tsh didn't matter. I knew it did and insisted he reduce the levo to 50mg. He reluctantly did. My thyroid numbers normalized in my next blood work. Recently however, I started feeling sick in the morning after taking the levothyroxine. I was nauseous and had a headache. I am lactose intolerant and my symptoms felt like I had ingested lactose. Decided to look up levothyroxine ingredients. Of course one of the items is lactose. Why would they put lactose in the medicine? Don't know, but my nausea and headache got so bad I asked to be put back on Armour Thyroid. The PCP gave me the 30 mg dosage. Just started taking it. Will see what happens.

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6 Replies
bantam12 profile image
bantam12

TSH doesn't matter when we are on thyroid replacement, most Drs dose on TSH level which is wrong so actuallly your Dr was correct saying it wasn't important. It's the T3 level that is important.

ResearchIsGreat profile image
ResearchIsGreat in reply tobantam12

My doc tests for T3 T4 and Tsh. Since there is a test for Tsh I assume it is part of the equation. I want all the parameters to line up. It may not matter for some but it matters to me. When he lowered the dosage, all my numbers normalized. With the higher dose of levothyroxine I was feeling hotter than I liked. Tsh is not everything but it is a part of the picture. It helped me get to the right dose for me.

MaisieGray profile image
MaisieGray

I believe that lactose is used as an excipient because it has excellent compressibility properties, a useful characteristic for forming tablet shapes. I'm guessing you are probably not in the UK, where we have the option of a lactose-free brand of levothyroxine, by Teva. Unfortunately it doesn't suit everyone, 'possibly' although not definitely, because of its mannitol.

I have to say that it's unusual to read of someone insisting their dose is reduced to encourage their TSH to rise; could you share your thinking on that?

ResearchIsGreat profile image
ResearchIsGreat in reply toMaisieGray

No I'm not in the UK. Didn't know there is lactose free version. To your question, I felt that a low tsh, out of range in my lab results suggested that I might be getting into hyperthyroidism. Therefore I felt I was being over medicated. I had also lost a couple of pounds, and I am already slim. Didn't want a new problem.

He was right about TSH and you were wrong. TSH is not a thyroid hormone and does not behave in a textbook fashion when on replacement hormones or not healthy. They don't checkkc iodine because in most parts of the world, iodine deficiency is no longer a primary cause of hypothyroidism - it's autoimmunity instead and if your thyroid is unable to make hormones because it is being/ has been destroyed, it doesn't mater how much iodine you have, you won't be able to make extra hormone. If your car has no engine, it doesn't matter how much fuel you put in, it's not going to start! Of course, it would be useful to test it if you live in a "goitre belt". many people do better on NDT or a combination of thyroxine and liothryonine, bu tit is next to impossible to get in the UK. Sadly, the only lactose-free thyroxine contains mannitol, which seems to cause even worse symptoms in many people. If Armour doesn't work for you, some people find one of the other NDTs (eg Erfa) does. They all have fillers, but some seem to affect people more than others.

SilverAvocado profile image
SilverAvocado

I agree with others that TSH is not important, the most important of the three in the thyroid panel is freeT3, but symptoms are the most important of all.

Sounds like you've changed from 50mcg of Levothyroxine onto 30mg of NDT (Armour). This is half a grain, which is the equivalent of about 40mcg or less of Levothyroxine, so you've had a bit of a dose decrease.

You're welcome to post blood tests when you're settled on your dose if you want any feedback.

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