Thyroid UK
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Hi new to all this and already know ive been let down by my gp, 8 yrs ago without explanation i got a test for thyroid i dont know the results of this or the yearly ones since, until now i was always told fine! Now in September its borderline and have seen 2 gp's 2nd for better explanation (which wasnt) all ive been told is my tsh is 5 which is borderline but symptoms are nightmare and since taking levo im not sleeping i can be awake from before 4am which has never been a problem before!! Incidentally the nurse i saw previous said i was at 5 not gp and she also said i had previously been 9 and 11 and never told!! First gp said i had antibodies 2nd gp said that those were last taken in 2012 😕 i am only starting to realise some things now but why am i not sleeping and hows best to proceed with gp thanks in advance

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Welcome to our forum and you will get responses/help/advice from the members. Most of us have gone through 'search and find' when levothyroxine (or the dose) doesn't relieve our clinical symptoms.

First thing to do is request a Full Thyroid Function Test which is TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

The test has to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between the last dose of levo and the test and take it afterwards.

Also ask GP to test B12, Vit D, iron, ferritin and folate. Deficiencies in any of these can also cause symptoms.

If GP or lab wont do all of the the thyroid ones you can get the ones not taken privately. We have two recommended labs. He should test all of the vitamins/minerals.

I see you have been diagnosed and assume you've been given levothyroxine which should be raised by 25mcg every six weeks until symptom-free or TH is 1. Unfortunately most doctors think that 'somewhere' in the range is fine. It isn't if we are hypothyroid.

We can improve our health but we need sympathetic doctors who are aware of disabling symptoms but they seem to be far and wide sometimes.

Post all of your results with the ranges. Ranges are important as labs differ and we have to have them to respond.

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Hi JenKerr, welcome to the forum.

First of all, tell us when you started taking levo, and how much you're taking now.

Secondly, ask at the surgery for a print-out of your last results. If you live in the UK, it is your legal right to have a copy. And, ask if your antibodies were high, over-range. It is very important to know that. Everybody has some antibodies, but if they are high then it means that you have autoimmune thyroiditis - aka Hashi's - and you need to know that. Doesn't matter when they were done, because they never go away. Once you have tested high for antibodies, you have Hashi's, and Hashi's is for life.

Sleeping problems are hypo symptoms. It sounds as if you're under-medicated at the moment. But, before we can help you with how to proceed, we need to know exactly where you are at the moment. Which is why I asked the questions above. Doctors don't understand very much about thyroid, which is why they tend not to treat it very well, and don't explain. You can't explain what you don't know! :)

But, basically, what it means is that your thyroid is having trouble making enough hormone for you to feel well, for one reason or another. Thyroid hormone is essential for every cell in your body to function correctly, which is why symptoms can be so varied and unspecific. Levo is the thyroid hormone T4, it's what we call thyroid hormone replacement. But, it won't help if you're not taking enough of it. And, doctors just don't seem to understand that! So, we have to learn all we can, and take charge of our own treatment.

So, you've come to the right place. People on here will usually be able to answer all your questions, help you to learn and help you to get better. So, just ask anything you don't understand. :)

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Usually patients need their TSH down to around 1 or 2 to feel well, although there is a lot of variation. Get hold of your previous results and post them here. Also, could you describe all your symptoms, this would help.

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If you can afford a private blood test (we have two private labs) it might be worthwhile as you've been struggling for eight years now.

If you had thyroid antibodies and even if TSH hadn't reached 10 (UK is the only country in the world (so I believe) to insist that the TSH 10 before being prescribed) you should have been prescribed levothyroxine. In other countries people are diagnosed when TSH is 3+ with symptoms.

We have two recommended labs both do home pin-prick tests they also make arrange to draw blood if you prefer.

Blood tests always have to be at the very earliest, fasting (you can drink water) and if you were taking thyroid hormones you'd allow a 24 hour gap between last dose and test and take afterwards. You can ask your surgery first if they will do the following tests. If not get private ones for those they wont do.

You need TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

GP should test B12, Vit D,iron, ferritin and folate. Deficiencies can also cause symptoms.

Get a print-out of your results with the ranges and post for comments. Ranges are important as as labs differ and it makes it easier to comment.

We have two types of hypothyroidism - the commonest is an Autoimmune Thyroid Disease called Hashimoto's and it is antibodies which cause this. The antibodies wax and wane. Sometimes too much antibodies and we feel hyper and at other times too low.

The other is just hypothyroidism.

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