Still having symptoms hypo

hi all . I got diagnosed with hypothyroidism 6 years ago and have been on 100mg . then a year ago was increased to 150 my. In May my husband had to call an ambulance out I had deteriorated could not move had no energy pains on chest heart racing could not stop shaking ..The list goes on after tests they said my med were way to high and I overdosed on levothroxine so doc put back down to 100 . prob is I still have all the symptoms of hypo . unbelievabley tired , headaches , diziness , constipation, constantly cold, anxiety ect. doc keeps saying it's not my thyroid but I'm convinced recent tests show tsh 0.46 . have done lots other bloods all normal. Don't know what to do anymore so fed up and scared of constantly being ill. I'm crying everyday. Help anyone x

6 Replies

  • Welcome to our forum fairydust76

    The majority of members on this forum are here because we didn't get well on the 'guidelines' for treating patients with a dysfunction of their thyroid gland.

    You can get better and we have to read and learn ourselves as, despite the guidelines, we remain unwell. Doctors seemed puzzled - they are poorly trained. Are not concerned the patient still has clinical symptoms, despite being on levothyroxine. The may adjust it up/down/up/down according to the whereabouts of the TSH. Don't take Free T4 or Free T3 blood tests.

    Your doctor 'keeps saying it's not my thyroid' but he wont say it could probably be levothyroxine does he? They have been told that is the only hormone replacement for hypothyroid patients.

    If you have a print-out of your most recent blood tests, with the ranges, post on a new question for comments. If you've not had one for a while ask your GP for a Complete Thyroid Function Test (probably wont but ask anyway). TSH, T4, T3, Free T4, Free T3, Vitamin B12, Vit D, iron, ferritin and folate (we are usually deficient in these).

    The blood test should be at the earliest possible time, fast (you can drink water). Leave about 24 hours between your last dose of levo and the test and take it afterwards.

    He probably wont request them all but say you've been ill long enough and want to get to the root of the problem. If the lab wont do them (some wont if TSH and T4 are 'normal range') you can get a private test done by one of our recommended labs. You have lots of clinical symptoms of hypothyroidism but they are not trained these days to take notice or know any of them at all.

    Never take the words 'normal' 'fine' 'o.k.' with regard to blood test for thyroid hormones. Always get a print-out with the ranges for your own records and you can post if you have a query.

  • Thanks for your reply my last test was in sept I asked for results they only gave me tsh result 0.46 they said that's all they had also said vit d low but not low enough to take supp. I have no faith in my doc every time I ask about thyroid he. gets a medical dictionary out as he doesn't know and just keeps telling me he can only prescribe levothroxine and the only reason people are given other medication is to make money of patients as they pay private. The worrying thing is he said I don't need another test for 5 years. my understanding is its every year . I've moved doctors 3 times in past 3 years I'm at my wits end. his new thing now is every time I go he puts all my symptoms down to being anxious and referred me to a psychologist. .hes making me think I'm going mad now. I have an app monday my husband is coming with me as he has had enough of him now and he said he isn't leaving till the doc refers me to a specialist in thyroid conditions..that will be a fun morning.

  • I'm sorry about your difficulty in having doctors really understand what having a dysfunction of our thyroid gland really means. In fact we, the patient, shouldn't be trying to educate people we have helped to get a degree or whatever but don't know the first thing about the function of the thyroid gland.

    We have to educate ourselves otherwise we will be housebound and/or always unwell.

    What dose of levothyroxine are you taking? Do you take if first thing with a glass of water? When you have a blood test (God help you if he says it is only every five years - what!) get the earliest possible and fast (you can drink water). Leave about 24 hours from your last dose of levo and the test and take it afterwards. Always get a print-out from your surgery with the ranges (we are entitled by law) for your own records and you can post if you have a query.

    If your husband is going with you ask if you can have some T3 added to a reduced T4 (GP will probably shake in his shoes) but it has been helpful for some patients.

    They are happy to put a 'handle' on your symptoms, i.e. depression, anxiety, etc etc but it is a fact that if we cannot convert T4 (if you have had a sufficient dose) to T3 we will be ill.

    Some people also have a gene defect which means they cannot convert T4 properly. It still doesn't mean doctors will prescribe something othe than T4.

    If GP hasn't tested your Vitamin B12, Vit D, iron, ferritin and folate ask for these to be done as we are usually deficient.

  • I take 100mg . when I had my test I asked if I needed to fast or take tablet a different time and was told no. I take my tablet first thing in a morning. I had my test at 10 am. He did all the tests he said vit d was low but not low enough for treatment. I asked for a print of my results and was told tsh 0.46 and that was the only result on my file. I'm really losing the will with my doctor I know more about it than him but I've moved doctors 3 times now doesn't seem to make any difference. his opinion seems to be he is the doctor he has told me it's not my thyroid that's making me ill as I'm taking levothroxine and it's under control. argument is its obviously not under control as I have all the symptoms and can't function anymore.

  • You have to request a print-out of your blood test results each time for your own records. By law we can have them.

    To have accurate blood tests for your thyroid hormones, follow the suggestion I gave above. We have to learn if we are to get well. Doctors appear to know zilch when it comes to thyroid gland. I do wonder if they actually know where it is!

    If we take thyroid hormones a couple of hours before test it skews the results and may result in a reduction when we do not need one and we may really need levo increased. Then we feel more unwell with the lower dose. You have to follow the procedure I gave above for a more accurate blood test.

  • vitamn levels may be in range but not optimal for you.

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