Fed up!!!

I was diagnoised in May 2012 as underactive! I have gone from 50 to 75 and last week up to 100mg of levothyroxine! My results are TSH 1.5 catchment is 0.3- 6.5 this has gone from .82 in August to 1.5 now! I have all other normal results had this checked independently. Been to see and Endo and discharged!! Still cant work more than 6 hrs a day and no more than 4 days in a row! Have a fuzzy head, aching arms and legs, fall asleep at the earliest opportunity, feel like things are crawling on my skin!! I cant even contemplate exercise which I need for my job! Is this normal and do I have to just suck it up and get on with it!!! Im not taking any other meds apart from Iron tablets due to Ferratin being 5 in August but now up to 26!! Normal GP who was lovely has left!! I feel 100 and worse than before I started taking the bliming tablets!!! Rant over sorry!!

4 Replies

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  • Hi

    I'm sorry you're feeling so bad. If you have just increased to 100mcg you may find you improve over the next few weeks. It can take 4-6 weeks for an increase to have it's full effect and even longer to feel better once you are on the correct dose. Bear with it and perhaps, if you are not feeling any better in 3 weeks time, make another appointment with your GP to see about another 25mcg increase.

    If your ferritin is still only 26 this will be contributing to how you are feeling. You must feel awful with a ferritin level this low. You need to aim for 70-90 as a minimum.

    You certainly shouldn't accept that you will always feel this way. You should be able to feel well with the correct treatment so keep going back until you get what you need.

    It might also be worth testing your B12 and folate as well as your vitamin D. If any of these are below optimal ranges you will feel rough. B12 needs to be above 500 (not the measly 180 that the NHS states!) and vitamin D needs to be around 80. You may find that taking a vitamin B complex helps anyway. It is very likely you are deficient in one or more B vitamins and as they are water soluble you are extremely unlikely to have any toxicity problems.

    I hope you start to feel better soon. Don't give up. You can be well again.

    Carolyn x

  • Thank you for your quick response. Im just not very good at feeling rubbish! Also Ive had another mild case of thyroiditis over Christmas which I guess doesnt help! The GP I have to see for work has already made a comment that my bloods are fine and cant understand whilst Im not feeling well! and I think he thinks Im faking it. Im off to see him again tomorrow is there anything I cant print off to stick under his nose?

  • Sorry, I replied earlier but it didn't post :(

    If you have Dr Toft's book "Understanding Thyroid Disorders", he states that people on thyroxine often need their TSH to be below 1 to feel well and sometimes need it to be suppressed. This is due to the fact that the internal feedback loop that normally keeps our thyroid producing what's needed, is broken by the very fact we have hypothyroidism.

    There has been recent research that shows how TSH is not a reliable tool on its own and should be used in conjunction with T4 and symptoms. Check this blog for more details

    thyroiduk.healthunlocked.co...

    If your GP doesn't understand why you are not well and is convinced it is not your thyroid, then it is his duty to find out what is the problem. This is a good reason for him to test your B12, folate and vitamin D as deficiencies in any of these could be causing the symptoms you have.

    I think there was something else in my original reply that didn't post, but I can't remember. If it comes back to me I'll let you know :)

  • I think we all have to be aware that there was a distinct lack of Vitamin D this summer, roll on spring and some sunshine, nut grab every available ray you can, even at this time of year. Good luck

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