FINALLY!!!!: Okay, so after over a year of... - Thyroid UK

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FINALLY!!!!

Funnygembunni profile image
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Okay, so after over a year of feeling like crap every day, TPO over 600, and normal thyroid labs, I finally argued my PCP into starting me on a low dose of synthroid!!!! Before I start taking it, I just want to ensure it is th right thing to do with my severe symptoms with normal thyroid labs. I've been reading that those of us with hoshimotos even with normal labs need thyroid replacement hormone. This is good news right?? American doctors just don't prescribe this when labs are normal and now I'm second guessing myself! Thanks for any opinions!

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Funnygembunni
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shaws profile image
shawsAdministrator

Yes, one of our Specialists does recommend taking thyroid hormones if antibodies are present and I'll give an excerpt of what he says. He was answering questions:-

2. I often see patients who have an elevated TSH but normal T4. How should I be managing them?

The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.

But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.

In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.

Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough. "

There is a whole article and if you want a copy email louise.warvill@thyroiduk.org.uk and ask for a copy of Dr Toft's article in Pulse Online.

Funnygembunni profile image
Funnygembunni in reply to shaws

Okay I thank you! All my thyroid labs are normal except TPO and very severe symptoms. Going to try synthroid and see how it goes, just wanted to make sure it was okay

greygoose profile image
greygoose

What do you mean by 'normal'? And what do you mean by 'a low dose'?

The range of supposedly 'normal' results is vaste, and it dépends where in that range you fall. You could be hypo without your doctor even realising it!

If your dose is too low, it could make you feel worse, which in their ignorance, they would take to mean that you Don't need it.

For example, if your thyroid is putting out 50 mcg T4 (this is just a made-up example, no way of knowing) and you start taking 25 mcg (which is the usual low dose), then your thyroid could stop making what it's making on it's own, meaning that you in fact have a decrease in T4 of 25 mcg. So, you will feel worse!

I Don't want to discourage you - on the contrary! I think you should be on thyroid hormone replacement when you have anitbodies. But it's the 'low' bit that worries me. Best to ask for 50 mcg which is the usual starting dose, not a lowered-down version. :)

Take care.

MikeR profile image
MikeR in reply to greygoose

GG I saw a good video on hopeforhashimotos which showed an escalating dose over a 4 - 6 week period and it explained why.

hopeforhashimotos.com/video...

greygoose profile image
greygoose in reply to MikeR

Mike, are you suggesting that her doctor is going to use this protocol described in the video? I rather doubt it. He's probably, if he's like most doctors, - although she doesn't give any détails, which is unfortunate - going to put her on a low dose and leave her for a couple of months.

I can see what he's getting at here, but a) it doesn't sound like the same case a Funnygembunny. He's talking about someone with high TSH, and low FT4. FGB said that her labs are 'normal' which I take to be low TSH and, perhaps, mid-range FT4.

And b) to my mind, his theory has several problems, the first being that you cannot really know what a person's full dose is going to be. Weight is only a guide, not an absolute. Secondly, he's only using the TSH test, but he doesn't not say that his aim is to suppress the TSH completely, he says around 0.5, which is far from suppressed. And 0.5 is not going to stop antibody attacks. The TSH needs to be 0.01 or something, so that there is no gland activity.

He also says that when he starts the patient on the low dose, he is adding it to the endogenous hormone. What usually happens in real life, is that taking the small dose stops the endogenous hormone production, as I mentioned above.

Another problem is, you can have no idea at what rate the gland is going to be destroyed. Antibody attacks are random, not at a fixed rate. I've heard people say they swing from hypo to hyper and back again in a day. With me, it took many, many years. In retrospect, I can see exactly when I was on a hyper swing, and they were few and far between. Most of the time, I was just mildly hypo - with periods of severe symptoms. But the complete destruction, being unmedicated,, took a long time. But it's very individual.

I very much doubt if you'd find a doctor in England who knew anything about this type of protocol. And finding one that cared, would be even more difficult. :(

greygoose profile image
greygoose in reply to greygoose

Oh, and he also talks about iodine being 'good' for the thyroid, and increasing hormone production. Well, only if you're iodine deficient. And Hashi's isn't aout iodine deficiency. I Don't really think I'd want to put my life in this doctor's hands.

Funnygembunni profile image
Funnygembunni

Okay so I took two 25mcg tabs. And I've heard that it takes up to 6 months to a year to feel any effect...... I feel the effect completely after the first dose. I'm totally hyper now. I can feel it, it's amazing actually since I've not been clear headed for over a year however I wonder if the dose was too high? It has dry thrown me into a hyper state. Is this alright? Or should I take it down to one tab? No palpitations just a serious case of hyper active feeling. Is this normal?

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