How do I get better? Where do I start to understand my diagnosis and how to improve my health so I can get back to the old me. n

Hi, I am 47 and just been diagnosed, my thyriod has stoped working and I am on Levothyroxine 100mg daily. I have been on this now for 9 weeks but still feel so tired and have so many symptoms it didnt leave many that I dont have when I did the cehck list on the thyroid web site. I think I have Hashimoto and want to know how you get tested for this. I dont understand all the levels everyone goes on about where can I get information for this as my doctor said I am at the lower end of regeristing level so I shouldnt have all the syptoms I should be feeling improvements which im not.

6 Replies

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  • Welcome. Generally the first step is getting your test results and being tested for folate, iron, ferritin, b12 and d. Your gp will have tested your tsh and may have tested your t4 and t3. They may tell you that all the tests look good but sometimes the meds need more tweaking to optimise your treatment.

    You can find out if you have Hashi's if they do an antibody test but for many this isn't crucial information unless you have trouble getting diagnosed or continue to feel unwell on your levo. I think it is assumed that you have Hashi's if you're diagnosed in the UK as an adult.

    Have they done a follow up test or is that scheduled?

  • Hi and welcome aboard,

    Have you been advised by your GP to keep your levo preferable two hours away from an food or drink (except water) and four hours away from any other medication of supplements you may be taking.

    Levo needs to be taken on an empty stomach for it to be absorbed into the body properly and eating and drinking - which includes milk - will interfere with this process. A women's stomach takes two hours to empty after eating, which is were the two hours comes from, so if you want to get the best from your thyroid medication then leave a two hour gap.

    Anything with iron or calcium (which includes milk as this contains a lot of calcium) in it needs a four gap. Because of the above many people find taking their levo last thing at night (making sure you haven't eaten of drunk anything except water for two hours) works better for them as levo absorbs better over night with nothing to interfere with it.

    Moggie x

  • Hello, I'm 47 too and just battling to get a diagnosis, although I clearly have hashi's. Can you get a copy of your blood tests results? They cannot refuse to give you these although you may need to be firm. Then people can give you more advice.

    The main ThyroidUK website has lots of info on what the test results mean, but here is a basic outline for you.

    TSH stands for thyroid stimulating hormone and is what your pituitary gland sends to your thyroid to hopefully make it produce the thyroid hormones t3 & t4. Most t3 is made by conversion from t4 in your body, mostly in the liver. So you should have bloods to test for tsh, t3 and t4. Also you should be tested for antibodies.

    Does that help at all?

  • Hi 1Harley I am sorry you feel tired and still have so many symptoms. I really sympathise.

    You have come to the right place, you will get loads of support and really useful advice here.

    It makes me mad to hear of that doctor telling you how you should feel because the tests are showing "normal" readings. One day I will loose my rag with one of them if they come that rubbish with me and tell them straight - it is my body I have been in it since birth and how dare you presume to tell me how I should feel in it. Until modern medicine allows you to inhabit my body and take it for a test drive what I tell you is the facts of the matter. (To quote The Prisoner) "I am a person, I am NOT a number!"

    What patronising arrogance. If you feel unwell the treatment is not fully effective - a good doctor will acknowledge that and try and work with you to improve things for you.

    This forum will really help you along.

  • I second all of the above. It is also worth remembering that sometimes if the GP likes the look of your test results even though you still have many, many symptoms, he will try to fob you off by saying that these symptoms are not because of thyroid problems but are perhaps because of depression, ME/CFS, menopause, migraines or some other vague diagnosis. It is true to say that you can have more than a thyroid problem, but often if your replacement is optimised such symptoms will go away. Remember that if levo isn't working for you there are other options: thyroiduk.org.uk/tuk/treatm...

    Jane x

  • Your GP should have given you a blood test after six weeks on levothyroxine, and usually this is increased until reach an optimum level when you feel reasonably well. Sometimes GP's mistakenly belief that when your blood tests who you are 'within range' that you are fine and ignore clinical symptoms you may still be having. Unfortunately, they may not even recognise them as clinical symptoms and prescribe other medication instead of increasing thyroid hormones.

    You would have to ask your GP to check for antibodies and if he does this test, ask also to check B12, Vitamin D, iron, feritin and folate as we are usually deficient and they can cause problems in themselves.

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