so confused-can anyone help?

Hi, I was wondering if anyone can help me understand whats going on with my thyroid because I am stumped. I was born with underactive thyroid and it was under control until two years ago-I then put on 3 and a half stone in 3 months, was constantly tired and developed a goitre a year ago, which is painful/throbs amongst other symptoms. In the last two weeks I have become incredibly cold/shivery with trembles and painful chest/tight chest/heart palpitations with upper back pain, and heavy chest/difficulty breathing/laboured breathing. I went to the Drs for bloods and was told today my TSH is 17. something yet I am on 200mg daily. I have now been upped to 225mg daily which I am concerned about because of my chest pain/heart palpitations. I am booked in for ECG next week, and scan on throat. Dr said my antibodies are within range. I dont understand why my TSH is so high when I am on such a high dose but my Dr said my T4 was ok (dont know about free T3 at this point). My kidney function isnt great(last time checked my EGFR dropped 11 in one week to 73) and need the loo constantly. Can anyone shed any light on what may be going on?

12 Replies

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  • My first guess would be that your body is unable to convert the inactive T4 you take into the active hormone T3.

    You really need to get your FT3 measured to show whether or not this is true.

    Having an underactive thyroid gland can reduce our levels of minerals and vitamins and this gets us into a downward spiral because we need those vitamins and minerals to help convert T4 to T3, which makes us feel even more hypo.

    Ask your doctor to test your levels of FT3, thyroid antibodies, vitamin B12, vitamin D, iron, ferritin and folate. Get a copy of the results (the actual numbers) including the reference ranges, and post them on here for comment.

    Getting your minerals and vitamins up to optimal levels will help. But you may find that the only chance you have to get better is to take a combination of T4 and T3, or possibly NDT. But this is difficult because the NHS is massively overcharged for T3 and so doctors are unlikely to prescribe it. NDT is unlicensed so they won't prescribe that either. (NDT was the only treatment for hypothyroidism for many decades before levothyroxine was introduced, and many people still prefer it when given the choice.) Many people on this forum buy their own T3 and NDT on the internet.

  • Thank-you for your post. My doc said my thyroid antibodies were fine and I asked for free T3 test but dont think she did it, will have to check. Is NDT dessicated thyroid? My mum wants me to go onto armour but I am concerned about switching as I dont want to mess it up even more by switching meds, when my levels are all over the place. I will get a copy of the results and post when I see my doc again. Thanks for the help and Il start taking vitamins.

  • Yes, NDT is "natural dessicated thyroid". Armour is a brand name of NDT, and there are several others.

    You should really ask your doctor to test your minerals and vitamins before supplementing. There are several reasons for this...

    1) Taking supplements when you don't need them may be dangerous (it depends on the substance), and is a waste of money too.

    2) If you are suffering from low B12 you might have Pernicious Anaemia. Testing for PA should be done before supplementing with B12 is started because it can distort the results.

    3) Just taking a generic multivitamin/multimineral is unlikely to do you much good because the dosages are too low to raise levels.

    Edit : I had to submit this reply about 5 times before it actually submitted, so my apologies if it appears multiple times.

  • I just went to my doc and got my blood results, and are as follows:

    Serum TSH level : 17.10mu/L (0.35-4.94)

    Serum free T4 level: 13.4pmol/L (9-19)

    Serum free triiodothyronine level: 4.5pmol/L (2.6-5.7)

    Serum thyroid peroxidase antibody concentration: <0.50iu/mL(<5.61)

    Mean cell haemoglobin concentration: 353g/L (310-350)

    My gfr is 78 also with creatinine of 81umol/L

    What do you think? I also have kidney and liver test results if they are helpful.

  • 200 - 400mcg per day used to be the dosage before blood tests for TSH, so don't worry about the amount I that respect. Also palpitations are a symptom of hypothyroidism. Good though that you are having an ECG.

    As others have said, you definitely need to have your FT3 measured.

  • I think your doctor needs to check you out more carefully. Upper back pain can be other things rather than just the back. As far as I know hypothyroids can feel very cold but do not shiver, possibly you have an infection. The weight gain was some time ago, you could well be going hyper now.

    I'd ask if your ECG can be brought forward. Cardiac problems can cause havoc with thyroid blood tests ("non-thyroidal illness" - used to be called "euthyroid sick syndrome"). Ask them to check out your chest pain, palpitations, breathing difficulties, upper back pain urgently and then if that is all OK (can be stress releated) they should do a full thyroid blood test including fT3.

  • Low cortisol can make you hot then cold, I have shivered, it also interferes in t4 conversion and t3 take up in the cells. Worth bearing in mind if you get the gp to test your vit levels as suggested and u still can't get sorted it's worth paying for a cortisol saliva stress test yourself. Some labs will not do ft3 check even wen asked by gp if t4 is ok. Another thing worth paying for if u really can't nhs to do.

  • Thank-you for all your help. I may have to pay for ft3 as my gp asked for it, but she did not mention them in the results.

  • I do think you should ask to see an Endicronologist Specialist as most G. P's do not understand thyroid disease very well.

  • Has anything changed in your diet? For example, have you stopped eating gluten? Or started using soy milk?

    Do you take your levothyroxine well away from food, drinks (other than water), supplements and other medicines?

    Has any other medication or supplement changed?

    Have you had even a standard Full Blood Count or any other tests?

    Rod

  • I havent changed my diet. I take my levo when I get up in the morning. I havent changed anything I dont think, but two years ago when I gained all the weight and my thyroid started going crazy/ under then over, I was overworked/stressed and sleeping for 2/3 days ago. I have had a full blood count but my GP didnt give me the results. When I go back to see her Im going to ask for a copy of the actual results of all the tests she has done and then I will post them on here.

  • Ok, so last night something kind of scary happened. I was sat watching a film and all of a sudden my neck swelled up big really fast and at the top right of the goitre I had really bad pain which was like pulsing every five seconds then went to ten then 15. Then my throat closed up and couldnt breathe too well. Ended up being taken to A and E where we had to wait for 3 hours, but finally got some answers when I saw the Doc, he said I have a multi nodular goitre which filled up with blood (which i think explains the pulsing) which is why It swelled so fast and I will probs have to speak to a surgeon after my ultrasound and to take painkillers and tk to my doc as I need to sort it quickly, problem is my doc is on holiday til the 13th, so guess Il just have to wait until the ultrasound in 3 weeks. The only thing I did differently yesterday was eat a bunch of brasil nuts and mackeral which the doc didnt think would have caused this reaction. My mum thinks that it is though because the vits/minerals in those help you convert but because of the nodules my body was forced to do something it didnt want to do which is why it haemorrhaged. What do you guys think? Thank-you for all your help previously too.

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