Levothyroxine just doesnt seem to be working!

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Hi, I have had thyroid problems for over 10 years and have had various symptoms over time hairl loss, extreme weight gain, loss libido etc but since i got pregnant 21 months ago my problems have got worse to the point were I have had enough!

I am currently taking 225 mcg of levothyroxine which is a high dose but it just doesnt seem to be working? I am extremely tired still and have numerous ailments due to the condition such as , lethargy bouts of depression, muscular pains and my joints have started to weaken in my knees causing me to fall!

I am only 27 yrs old and feel as though I am a pensioner. I really have had enough of it.

Has anyone any advice? I have regular tests and everytime they show I am still undermedicated! How much can you take? what is the next step? I just want to feel normal again as it affecting my work and home life.

I had to have my tonsils removed last month as due to them been enlarged and me also having a goiter it was restricting my airways! Anyone else suffering or suffered like this? I am at my witts end x

Angie (very fed up)

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11 Replies

  • Posted

    ow you poor thing yes i have all those simtoms i've been taking thorxin for about a year i don't feel any better as i've been getting palpitations i stopped taking them last saturday so i'm going to see a dr this afternoon as i've found two other meds you can take thay are liotyronine this one is the more expencive one and the other is aroumer throid wich is on the nhs i think you need to change you tabs my blood test keeps comming back telling the doc that its ok he told me the last time i saw him it was all in my head and he's booked me in to see a counciler i go to see her next week we shall see i'd like to prove the dr wrong, hope this is of help to you hun keep intouch i will have to regester here then i can pm you and we can tale on a reguler bassis good luck hun hugs sandra
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  • Posted

    Thanks I hope you get sorted out x

    Its funny isnt it I feel as though when I visit my Gp Im wasting his time! as like you say the presume its in our heads however one gp at my surgery is very good he has run all kinds of tests for me oh well maybe their will come a miracle cure x

    Register I only did so yesterday already worth it x

    Angie x

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  • Posted

    Hi there

    I really do understand how you feel, reading your post is similar to my own symptoms - I'm 37 and I also feel so old, and I sympathesize with you more cos you're only 27.

    A visit to my endocrinologist last week left me in tears because according to them my symptoms are 'psychological' and they believe I have chronic fatigue syndrome. I take Vit D for my muscle and joint pain given to me by my GP and my endo believes I shouldn't be on Vit D because I fall within the reference range. I'm the patient so where does that leave me?

    I think you should go back to your GP and let him/her know what is going on with you. I'm going to go and see Dr. Skinner in Birmingham and if things work for me then thats good, if not, then I'll just have to get on.

    Anyway, take care and I hope things work out for you.

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  • Posted

    [color=red:b894c31c8a][/color:b894c31c8a]Oh my God - don't give up. Go to the Thyroid UK website and find doctors sympathetic to treating patients who are presenting hypothyroid symptoms but have 'normal blood test results'. My own saviour is Dr Skinner, whom I have just seen this morning. He is based in Birmingham but sees patients from all over the UK. My diagnosis was missed in 2000 and I was only confirmed in 2003 when I was good and ill!!!! I begged a referral but did not get one till 2004. I have posted an experience recently but as I am new to this site you probably haven't seen it. My GP practice has veered from supportive to destructive and my climb to good health again has been one long battle after another with them. Dr Skinner is an absolute miracle worker. I am now on 200 thyroxine and 20 tertroxin as I was not converting T4 to T3. Dr Skinner still thinks I have problems and is recommending an increase in Tertroxin (carefully monitored, of course) from 20 to 30 and then 40 with thyroxin levels remaining same. I guess I may be having another GP battle soon! Will let you know how it goes. You may have the same problem of non conversion if you are taking higher levels of thyroxine without any sustained improvements. [size=18:b894c31c8a]Life is not meant to be - or should be - that bad, honestly.[/size:b894c31c8a]
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  • Posted

    Hi

    I just saw Dr Skinner this morning for the first time. I didn't have to say much, he knew it all. I am also starting the T3 alongside the T4 and will be carefully monitored. He was very reassuring and was very taken back when he saw how low my ferritin levels were. Unlike my GP and endocrinologist, Dr Skinner explained everything which was clearly understandable. I've had so many problems since I've been taking thyroxine and he believes its because I've been hypothyroid for such a long time and my body has to adjust to it to the whole change that is taking place.

    I can only wait for a while and see what will happen next. But for now, I'm feeling that someone professional understands what is really going on - and thats important.

    Take care all

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  • Posted

    Hi, I have made an appointment to me my gp again on Tuesday hopefully he will refer me again for a specialist. My problem is the thyroxin isnt taking effect I am 225 mg but my t4 levels are still below where they should be, I was wondering what happens if the medication fails?

    will they remove my goitre and thyroid?

    Im just really unsure bout it as even though ive had the problem for quite a few years Im still non the wiser at even gp's dont seem to know much x

    Angie x

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  • Posted

    Hi [color=red:8d9919e78b]Angii08[/color:8d9919e78b] - please check out the Thyroid UK website for sympathetic doctors. You may have a problem converting T4 to T3. Is there any way you could get to Birmingham or Glasgow and see Dr Skinner - he is a miracle worker!!!!! He only sees patients privately and it is not cheap but worth every pound. I am not sure how to work this site unfortunately but I think you can send me a message - just don't know how it works.

    Also to [color=red:8d9919e78b]MS1Guest [/color:8d9919e78b]- absolutely fantastic - it may take a little time for you to feel the effects but stick with it. Please let me know how you get on too.

    Best wishes to both of you, ValfromCoventry

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  • Posted

    I was on 250 mcg thyroxine with the same problems. I saw a consultant endocrinologist on the NHS and was put on T$/T3 combination which solved the problems.

    I now go to an endocrine clinic at an NHS hospital 25 miles from where I live (in Nuneaton) where they monitor my T3/T4 levels closely.

    It makes me so angry that people are still have ing to pay out for what is theirs by right on the NHS - good health.

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  • Posted

    Hu - I saw an endocrinologist at the George Elliot Hospital - he said I was perfectly normal and did not need more than 50mcg thyroxine daily - I was too ill to argue with him and wanted to die! I am so pleased that your endocrinologist is good and that you have regained your health. I agree that noone should have to pay to get good treatment but Dr Skinner now only operates a private practice so I pay purely to see him.
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  • Posted

    Hi

    I agree with you - we're having to pay out which is rightly ours on the NHS. My endo just left me to it and I was just left hanging. I only went to Dr Skinner as the last resort because I couldn't cope anymore. Everything he explained to me should've been done by the endo. He was great, and he didn't look at me as if I was a psycho nutcase!!! I'll let you all know how I get on, it's still early days but I'm having hope. He believes I've been hypothyroid for a very long time.

    Angie, if things are that bad I think you should consider going to Dr Skinner. Read about him on ThyroidUk. All you need is a referral from your GP or other Medical Professional.

    Good luck, we are all here for each other.

    ms1

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  • Posted

    Good luck all of you. I have been very fortunate, but I do pay out to see a chiropractor and a podiatrist because the NHS could offer nothing for my back problems except painkillers.

    The NHS is very limited in what is on offer.

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