New here with little information!

[Piglet4]

Hi,

I was diagnosed about 4 years ago with an under-active thyroid and they stabilised me with a dose of 125mg of levothyroxine. My GP has had the results of my yearly bloods and he said that I now have too much thyroid and he dropped my dose down to 100mg. That was 6 weeks ago and today I have had the results of my second blood test. I was hoping that it would show that my levels had dropped dramatically because I feel awful. I go between not being able to sleep (last night was 4 hours) to not being able to stay awake and in between that I have awful nightmares. In 6 weeks I have put on 1/2 stone, my brain is like a sieve and I can not do two things at a time. People are saying what's wrong as they can tell that I'm not right and I'm so worried about everything all the time. And actually I just want to sit right down and cry at the moment - difficult as I'm at work!

My GP said that my levels are still too high and he will not up my dose to my original amount, but has now referred me to a Specialist, but in the mean time I have to put up feeling like this.

Is this normal? If my bloods are saying one thing and yet my body is telling me something else?

Any suggestions greatly received.

[startagaingirl]

Hi and welcome to the forum. Before we can really advise you would need to give us the numbers and ranges from your blood tests, ideally the last 2 - the one that triggered a dose reduction and the latest one. It is likely that you are undermedicated and that your dose has been dropped based on the wrong measure - unfortunately we have had a lot of that in the forum recently.

You are entitled to copies of results of any blood test, ask your GPs receptionist and say they are for your records. They are allowed to charge a token amount to cover paper and ink - 10/20p - but shouldn't be more than that if they charge at all.

There are also several important nutrients that us hypos are often deficient in and that cause their own symptoms and also drop effectiveness of thyroid medications. Vit D, vit b12, folate and ferritin are vital, it also helps to know if you are anti-body positive for hashimotos auto-immune hypothyroid. This is a condition whereby your immune system attacks your thyroid gland by mistake, killing off cells and hence causing it to produce less hormone. This causes 90% of all hypothyroid.

A good place to learn the basics is our parent website thyroiduk.org and go down through the menu on LHS.

Gillian

[greygoose]

No, it's not normal at all. Unfortunately, doctors know very little about thyroid. So, we have to take charge of our own health, if we want to be well.

Your fist step to feeling well is to get a print-out of your results. If you live in the UK, it's your legal right to have one. You need to know exactly what your doctor is testing, and exactly what the results are - if you don't know that, you can challenge him, because doctors don't believe in symptoms!

When you get the results, post them in a new question, with the ranges, and we'll be able to advise you.

[Piglet4 in reply to greygoose]

Hi Greygoose

I have my results and they are :

6 weeks ago my TSH was 0.03 and my T4 was 23.9 and this week my TSH was 0.07 and the T4 is 19.2

[greygoose in reply to Piglet4]

Sorry, need the ranges for the T4. The result on its own means nothing.

However, I can see why your doctor reduced your dose, your TSH is very low, and doctors automatically think that that means you're over-medicated. It doesn't, of course, the TSH is irrelevant when you are on thyroid hormone replacement and the TSH is below one.

Your FT4 has come down quite a bit, and your FT3 will have come down with it. And, it's low T3 that causes symptoms. And, if you have a conversion problem, your FT3 will be very low. So, you really need to get that tested, and take things from there.

[Piglet4 in reply to greygoose]

Thank you for the advise, I might try and get into the Surgery and see if I can get the full range. I know a letter has already gone off to a Specialist (the Surgery was able to confirm this) so I should hear from him soon. I am lucky that I get private medical insurance through work and I'm using that, to speed things up.

I've never had to worry about this before, as I was told that 'everything is fine' however I have lost a lot of weight so I'm wondering if that might have something to do it it.

[se185]

Hi,

I have had the same thing happen to me, I was on 125mcg and they just put me down to 100mcg because apparently my levels were high, even though I have been on 125mcg for over 10yrs.... I understand how you feel, some days are much worse than others but you can get through it if you get proper help. Also if you feel like 100mcg is making you feel worse go back to taking 125mcg without telling your GP, this way you can still feel relatively okay until you get to see a specialist. No one can tell you how you feel because they are not going through it, honestly I would just break the 100mcg in quarters and use it as 25mcg.

Hope this is helpful,

[Sunshine72]

Hi Piglet4,

I have very similar symptoms to you. Very tired and lethargic all the time and my head is also like a sieve. I don't have any nightmares though.

I have also gained weight and I am a not happy with my body image. It's very frustrating as I know that I need to exercise but I don't have any energy left over for that. My energy is taken up of just going to work every day. I work shifts so I guess that doesn't help either.

I know what you mean about sitting down and cry... I have today been to my surgery and asked for a copy of my last blood results so hopefully I can get some more answers.

Hang in there and try to stay positive!

Let us know how you get on ☀️

[Piglet4]

Update : I've seen a Specialist who said that according to my last blood test, I should be on medication for an over active thyroid not an under active thyroid! (the bloods are that wrong) and again he confirmed that it would be wrong to give me a higher of medication due to the complications (heart attacks and strokes). He has now said that he thinks that although I have been diagnosed with an under active thyroid he thinks that I could be in a depressive state, and that would be the reasoning behind my symptoms. I was not like this before I stopped taking the extra 25mcg. And I didn't think I was depressed but now I think I am as it seems my 'issues' I currently am living with could be either. I've got to wait now for more blood tests to get the proper figures and then I can see exactly what they are.

Has anyone else come across this or am I (as my GP nicely says ) 'Special' and 'a challenge'.

Thank you