Why do I have symptoms of Hypothyroidism when my T4 is high?

I am always cold, my reflexes were tested and found to be almost non-existent, I'm on daily medication for constipation and I'm gaining weight despite a 1000cal/day strict diet for the last 2 years. My T4 was 32.5, then 28, now 24. My doctor wants me to take PTU but I'm really reluctant to as I think they'll make my symptoms even worse. I also have none of the symptoms of hyperthyroidism and other doctors I've seen have been baffled. I did take carbimazole for a while but stopped because of the side effects. I was so cold I had to sit in a hot bath all day and felt like I was dying, no energy at all. Wish I'd never taken them but although my doctor agrees that I have no signs of hyperthyroidism, she only seems to care about the test results and keeps telling me to start the medication again. I'd rather just leave things alone. Any advice/opinions would be much appreciated.

28 Replies

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  • Have you had any form of T3 test? Seems the obvious thing to check.

    Have a look here:

    thyroidmanager.org/chapter/...

    I *know* it isn't an easy or light read. But I have my doubts you will find your answer anywhere that is written for patients. Something is very odd - somewhere.

    Not eating enough can itself be a problem.

    Have you been checked for iron/ferritin levels? Insufficient can make it difficult to metabolise thyroid hormones properly.

    Also, the usual vitamin B12, folates and vitamin D.

    Rod

  • My doctor will only test for free T4 and TSH. I did have a blood test for anaemia and they said it was fine. I've asked about my B12 levels and they said they were fine though I don't remember being told they were testing for this but maybe they did at the same time. I've tested positive for some thyroid antibodies but not peroxidase if that makes sense. I eat very little because when I complain to my doctor about the unexplained weight gain, she keeps telling me to cut my calories further. Despite this, I'm still gaining so I guess I'm still getting enough. I'm unsure if it's safe to cut calories below this level and still get enough vitamins etc. Should I get those tests done privately?

  • Please tell me you have been referred to an endocrinologist?

    In my humble opinion, whoever is trying to manage your case is way out of their depth.

    I am sure that you don't want to gain weight but below a certain level, you simply do not function properly and will fail to convert T4 to T3 adequately. Others know far more than do I about weight issues.

    If you are able to afford them and cannot get them done any other way, then get them done privately.

    And please, please get all blood test results from, say the last two years, including reference ranges. You are entitled to this information:

    thyroiduk.org.uk/tuk/NHS_In...

    Rod

  • Thank you so much for your help. It's lovely to know other people understand. I think she is an endocrinologist but she just seems uninterested in anything except T4 results. On my first visit she suggested I have radio-iodine treatment even though she agreed my symptoms don't make sense. I think I'll try to save up and get the T3 test done privately. Could you tell me what the T3 result would mean?

  • If you have high T4 (or even simply normal) but low T3 (whether Free or Total) it suggests that you are not converting T4 to T3 adequately. But you really need both T4 and T3 to be tested from the same sample to be 100% clear of the relationship.

    Your doctor truly doesn't seem to understand. Again, in my book, no-one should have radio-active iodine ablation suggested without considerably more investigation and understanding.

    Rod

  • I suggest you send an admin like the lovely helvella below a private message asking for details of good endos. They have details of both NHS and private ones. Perhaps there is a good one in your area because your current one isn't doing you any good.

    You really do need your T3 tested to see if you are correctly converting T4 to T3. T3 is the active hormone that your body uses. There are a number of us on this forum who are on T3 or a T4 and T3 combination because we don't get on well on T4 only. This might be the case with you too.

  • I have the list from Thyroid UK of private doctors though there's none near me. I think it would be worth taking a trip to get the tests done because I'm getting nowhere with my current doctor. Hypothyroidism runs in my family and up until about two years ago, my GP said I was verging on underactive but was still just within range. Makes it even stranger that they're now wanting me to lower it further. My symptoms are identical now as then.

  • You could organise getting the tests done yourself, using one of the private laboratories listed on the TUK website: I've used Genova. You'll need to find a local hospital that will take the bloods for you (if your GP won't do it) - a fee will be payable with either option - typically about £25. Then you could post your results here for comment - the forum's feedback might give you some ammunition to go back to your GP, or to a more sympathetic private doctor. The Genova labs supply all you need, with instructions.

  • You could try asking your gp to do bloods and ask for T3 to be done - unfortunately sometimes the labs don't do it even when it's asked for but if s/he gives a specific reason on the form it might help. You could also ask your gp to refer you to a different hospital for a second opinion if you are not satisfied with your current endo. Ask around and see if there are any good ones in your area.

  • you will not lose weight on 1000cals a day! you're body is in starvation mode and clinging on to it's fat stores.

    by having 2 years of such low calories you've also suppressed your metabolism in a big way!

  • I quite agree with Gareth. Ripply, 1000 cals is not enough for you to convert on. And if you don't convert, you will become even more hypo and put on even more weight. In general, hypos need more calories than average, not less. And when you are hypo it is no-longer just a question of calories in vs calories out. It's not that simple.

    Don't listen to your doctor on that subject. Doctors are not trained in and know nothing about nutrition. She aslo knows nothing about thyroid, judging by the evidence. That's a lethal combination.

    You must start eating more. Not just to lose weight but for your over-all health.

    Hugs, Grey

  • I was just about to make the same comments as gareth83.

    You need more calories, not less. Really sad for you xxx

  • It's a shame when doctors just say eat less even when you've told them you have unexplained weight gain . I'm having similar problems but trying not to cut down just eat more fruit n veg and exercise. It's definitely not as easy as it was before total thyroidectomy 3 years ago

  • Easy on the exercise, Thyroidmeg. Not only does it use up your calories, but it uses up your hormones too!

    Hugs, Grey

  • Whilst on T4 Although my results looked "normal" on paper , Ilike you I suffered the symptoms, I addressed the weight by avoiding carbs although long term that did make my overall symptoms worse. I am also wheat intolerant. I bought a blood pressure unit on recommendation from a friend after a little visit to the hostpital with a heart rate of below 48bpm I was flipping freezing!

    When at my coldest my heart was running at its slowest, if i got moving, which is hard when you feel like your head is in a bag and your feet are in divers boots.... I did warm up but only on T3 and my haert behaves it's self :)

  • It just shows you that the blood tests are largely inaccurate. The ones I've had bear no relevance to my symptoms. They are only a snap shot at the time the blood is drawn, and could be totally different an hour later. Why don't doctors just listen to your symptoms. It's so easy to take your pulse and temp in the surgery:-(

  • Hi there, I had the same experience my T4 was really high but my hypo symptoms were returning within a couple of weeks after every increase. When the doctors stopped the increases I was worse than before medication. I was very lucky that my GP did lots of research and backed a trial on T3 - some people need higher levels of T3 to feel well. Now I'm reducing my T4 right down I feel more human with each decrease - the weight will come off - you need to eat well for now as you're body is under stress. Once you're starting to recover it will come off easily - some of it will be oedema.

    I paid to see a private specialist - it is worth it, saves losing precious time.

    Hope you feel better soon.

    xx

  • Your not converting converting T4 (Thyroxin) to T3 (Liothyronine)

    Get your Full Endo Bloods done as others advise you on here.

    I cant remember the exact part of the blood test that will stand out as wrong but Its to do with brain function which will be completely wrong on T4. Sorry cant remember it could be TSH levels. The doctor needs your full Thyroid Blood Tests & not just your standard Thyroid one to see the full picture. If you can do it get it private because you need to get sorted ASAP.

  • You can get T3 and T4 checked yourself. All you need is a private GP to ask for the tests, or someone to take the bloods. Your GP is a muppet for relying on TSH and T4.

    Also get your thyroid antibodies checked.

  • What a shame - feel really sorry for you having to go through this for so long. The others are right - eat more and take your body out of starvation mode, then you are in with a chance. You may also feel cold if you haven't got enough food going in to fuel you. Change GP?

  • Because T3 is the only part of the hormone that reduces symptoms. Your T4 is being stored and might be turning into reverse T3 rather than T3.

  • I too had horrible hypo symptoms with a fT4 that was just above the top of the range. My fT3 also looked good, but I felt terrible. This was on thyroxine. I don't think I could tolerate it and it was all pooling in my blood and not getting into my cells, where it was needed, causing the horrible hypo symptoms.

    i switched to NDT (Natural Dessicated Thyroid), and although it has been a slow process for me, I am now feeling pretty well and back to normal. NDT contains both T4 and T3, so I do seem to be able to process this kind of T4.

    I would suggest you find a good endo and ask for a trial of T3 or NDT :) xx

  • The doctor I'm seeing is a specialist at the hospital. I'm not sure if she's an endocrinologist though. My GP referred me when I refused to take the PTU. I'm worried about more weight gain if I increase my calories. My doctor keeps saying 'There's no fatties in a famine' which I hate because it doesn't seem to be working for me. My basal temperature is always low in the mornings but within a short time of getting up, it's within the normal range. My doctor is insisting I take the PTU or get radio-iodine treatment. She says I'm risking destroying my bones and causing heart problems if I don't do this. Just wondering if I did get the T3 tested and it turned out I needed it supplemented, would I be able to get it on the NHS?

  • There are other things that can cause feeling cold; certainly iron deficiency anaemia can, and I think that if your adrenals are struggling they can cause that too, so it would be worth checking those out. But I agree with the others that your T4 could be high because you're not converting it to T3 but probably to reverse T3, which then blocks the T3 you do have from the receptors it needs to be in to do it's job, making you feel even more hypo. You can actually order a kit to test free T3 at home: homebloodtest.co.uk/shop/ar...

  • The doctor says they've tested me for anaemia and I don't have it. Everyone's so knowledgeable about this and I really don't even know what reverse T3 is. If I just say to them to test my adrenals and T3, will that be right? Or is it free T3?

  • It must be free T3. The trouble is that when GPs do request it, but the lab frequently doesn't bother. I heard a rumour that the NHS doesn't fund it, so the labs know they won't get paid, but that may not be true, or may be true for some areas, or may only apply to GPs but not to endocrinologists, so I would do the home test if at all financially possible. The NHS aren't interested in your adrenals so the best thing to do is get a saliva test that takes 4 samples over the day. You can order one without a doctor here (I've used this one myself): purehealthshop.co.uk/shop/a... But do check online whether adrenal problems cause your sort of symptoms before ordering as I'm not an expert at this sort of thing! Also, get hold of a copy of your test results and check it out for yourself. GPs only seem to test for ferritin and the 'normal' range includes very low values that will make you ill. Reverse T3 is very confusing and I would say don't worry about it for now, just get your T3 tested and see if it's low or not. There is a page that explains it here: stopthethyroidmadness.com/r... if you're feeling brave!

  • Thanks for the links. Everyone is so helpful. I think I'll order the adrenal saliva test and ask the doctor to test the free T3. If they refuse, I'll order the home test kit or find the money somehow to get it done privately. It's all so complex. Hopefully, if I post the result on the forum, someone could help me make sense of it!

  • That's a good idea. Yes, do post your results here! And your iron results, if you get hold of them.

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