Thyroid UK
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Feeling hopeless

Hi

I have been taking levothyroxin for an year plus now.my dose went up many times from 50-125.everytime dose went up I felt better for first few weeks and then my symptoms got worse.my tsh is below normal and t4 is 18.6 last wk.i also had t3 checked is 3.6.i have hashimotto my tpo was 664 last year.recently I came to read about t4-t3 conversion problems and reverse t3(my gp don't even know about reverse t3).i also suffer with severe premenstrual syndrome for last 18 months. Nothing worked now I am on antidepressants for last 14 days of my cycle.Anybody heard about wilsons temperature syndrome apparently it is associated with hypothyroidism.i am 34 working mother of 2very active girls .still very tired ,depressed and feel hopeless.feel like my life is over and will have to live like this for the rest of my life.pls reply

Thanks

10 Replies
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The Wilson's Syndrome isn't proven to be correct.

So that members can assist we have to have the ranges as well as the results. Labs differ in their machines and ranges are different.

What you can do, if you can afford it, is to have a Free T4 and Free T3 blood test and on the following link you can see the reason for these to be done.

thyroiduk.org.uk/tuk/testin...

Levothyroxine is T4 only. It should be optimum to convert to sufficient T3. T3 is the only Active Thyroid Hormone that is required in our billions of receptor cells. We cannot function if T3 is low. Even adding some T3 (liothyronine) can be beneficial. as it is the Active hormone a 25mcg of T3 is equal to around 100mcg of levothyroxine (T4).

Blood tests always have to be at the very earliest, fasting (you can drink water) and allow a gap of 24 hours between the last dose and the blood test and take afterwards. This gives us the best result, The aim is a TSH of 1 or lower.

If GP hasn't tested B12, Vit D, iron, ferritin and folate ask for these at the same time as your next test. We are usually deficient which can also cause symptoms.

Always get a print-out of your results with the ranges from the surgery for your own records and you can post if you have a query.

web.archive.org/web/2010103...

You have an autoimmune thyroid disease called Hashimoto's due to having antibodies. These attack your thyroid gland and wax and wane. To reduce these antibodies going gluten-free cab geko,

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Thank u my recent tsh is 0.03 t4 18.6 t3 3.6.i had iron deficiency anemia and high cholesterol when I was first diagnosed with Hashimoto but that's corrected now b13 folate and vit D r ok.my hardest time is those 14 days before my periods .its unbearable even wanting to just give up everything.how can I test free t3 and t4.pls reply

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Just another thing is t3 and free t3 r different tests

Thanks

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Yes, one is total T3 and the other Free T3. This is an explanation:

How is it used?

A free or total triiodothyronine (free T3 or total T3) test is used to assess thyroid function. It is ordered primarily to help diagnose hyperthyroidism and may be ordered to help monitor treatment of a person with a known thyroid disorder.

T3 and T4 (thyroxine) are hormones produced by the thyroid gland. They help control the rate at which the body uses energy and are regulated by a feedback system. Thyroid-stimulating hormone (TSH) stimulates the production and release of T4 (primarily) and T3. As needed, T4 is converted into T3 by the liver and other tissues.

Most of the T4 and T3 circulates in the blood bound to protein, while a small percentage is free (not bound). Blood tests can measure total T4 (unbound plus bound), free T4, total T3 (bound plus unbound), or free T3.

labtestsonline.org/understa...

Don't get too confused as it is difficult to absorb everything. The best way to know if your dose is 'perfect' is that you feel well with no clinical symptoms.

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I shall give you a link and you can contact either Lab. One, Medichecks has an offer of some kind every Thursday but it possibly is always different. They are home pin-prick tests so be well hydrated a couple of days before and make sure hands/fingers are warm.

thyroiduk.org.uk/tuk/testin...

Remember to have blood drawn at the earliest, fasting (you can drink water0 and allow a gap of 24 hours between your dose and take after test.

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High antibodies means you have autoimmune thyroid disease also known as Hashimoto's

Hashimoto's often affects how the gut works, causing low stomach acid, and then low vitamins.

You need to know your levels of vitamin D, folate, ferritin and B12 as these are often too low as a result. May need supplementing to get levels up

Going strictly on gluten free diet has helped many improve symptoms and can lower antibodies slowly

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

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So, could you be a little more precise, please? What exactly are you taking at the moment? 125 mcg? Do you have the ranges for those results? It does look as if you have a conversion problem - and, no, your doctor wouldn't know anything about it! - but can't say for sure without the ranges.

Just one or two points :

* It doesn't matter if your TSH is under-range, no matter what your doctor says. The TSH becomes irrelevant once you're on thyroid hormone replacement, unless it goes high. The important number is the FT3. But, your doctor won't know that, either.

* It is perfectly normal to feel well just after an increase in dose, and then have the symptoms come back again. It happens to most of us. All it means is that your body was grateful for the much-needed increase, but it's still not quite enough. You need another increase. That's all it means. It's nothing sinister. :)

* There can be several reasons why one doesn't convert properly :

1) You're on a diet, and not eating enough calories.

2) You have nutritional deficiencies - ask your doctor to test your vit D, vit B12, folate and ferritin.

3) It can just be because you have Hashi's, and that's not a lot you can do about that!

* If your FT4 is high and your FT3 is low, continuing to increase the levo is not the answer. It will just convert to rT3. What you really need is a reduction in levo, and some T3 added. However, this can be difficult to obtain in the present climate. We've always had to battle against doctor ignorance of T3, and now it's even harder because of the cost. Would you consider buying your own? It is, to be perfectly honest, the only solution if you want to get well.

* It doesn't surprise me in the least that your doctor has never heard of rT3 - a lot of them have never heard of T3, let alone rT3! But, don't get hung up on it. It's not that much of a problem. Everyone has some rT3 because it's nature's way of reserving energy when you are ill, or in some desperate situation. It doesn't hang around for long, it quickly converts to T2. But, when your FT4 is too high, and not converting to T3, it will convert to rT3 so as not to waste the T4 - it can't be converted directly to T2, so it goes through rT3 first. rT3 does not, itself cause symptoms or problems. But, there's not point in taking a lot of T4 just to be disposed of in this way. Bad economics. lol

OK, so that's a lot to take in in one go! So, I won't say any more. But, if you have any questions, don't hesitate to ask them. The most important thing is that you understand your life isn't over, it can get better, and you are not alone. :)

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And I take levothyroxin 125 at 4am and don't eat or drink anything till 7

Thanks

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Thank u very much I have another app with my gp this wed I will ask her about FT4 and T3 and I didn't know we can buy meds without prescription is it safe to do so I am in a state that I can trying do anything to feel better.

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If you go to the right place, it's perfectly safe. If you decide that's what you want to do, post a new question asking people to PM you their trusted on-line links. :)

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