just increased thyroxin dose

Hi I have been on 50mcg of levothyroxine for 12 months. I felt awful but my doctor said I wasn't due another blood test until October.Managed to get one in September and TSH was 5.4. I feel like I am dying a slow death. My hair is falling out. I have just spent a weekend feeling suicidal because I had no energy and so much to do. I took me two weeks to get a 25mcg increase. Started this 6 days ago. will it get better and when?? grateful for any replies. new here xx

17 Replies

  • Wow I'm sorry you feel so unwell. I'm. Unwell too. I was diagnosed Easter time as being hypo. I started on 75mcg but my levels were >99 so quite high. I've had my bloods done every 8 weeks or so and I am now on 125mcg of Levo.

    I am due another test next week.

    If you are just newly diagnosed you should be getting regular check ups until you are stable then I think it goes to yearly.

    It takes a long time.

    People on here will help you better tho. I'm just new :)

  • Thank you, I thought I should have had a check up sooner but I didnt even have the energy to challenge my doctor. this site is very helpful. Im so glad I discovered it

  • Your doctor is another who knows 'Nil' about treating patients with a thyroid gland dysfunction.

    They are fixated on the blood test results alone and the aim is to get to a TSH around 1 or lower but they are taught it should be anywhere within the 'range'. Why must the patients suffer even more through incompetence.

    First of all, 50mcg is a starting dose with 25mcg increments around every six weeks till your symptoms go - not till your TSH reaches a certain number in the range. Some people actually need a suppressed TSH.

    What these doctors are doing is causing unnecessary harm to their patients by treating them by 'numbers' and not symptoms.

    Change your doctor and try to find one who knows what to do, not for you to train your doctor.

    I am sorry you are so unwell and can fully understand as I never was diagnosed by any of the ten specialists/doctors etc. Lucky a first aider noticed my swollen thyroid gland otherwise I might have kicked the bucket by now.

  • Thanks for your helpful reply. Im loving this site and all the support I was getting desperate. can only use internet quickly at work though as not on line at home. I have been hearing other levels at 99 and stuff and I think OMG!! mine were 13.6 and I couldnt move! lol cant imagine!! Anyway its quite clear that my doctor thinks a tsh level of 5 is okay and will not prescribe if it hits that or under. I had to speak to 2 drs in the same practice and go on and on about my symptoms as they said I would go hyper if they prescribed!! I hope it doesnt go on and on like this. thanks

  • I bet, if those doctors did their own TSH it would probably be around 1 providing they didn't have a dysfunction of their thyroid gland. They are so mistaken about 'as long as the range is with the 5' patient is fine and anything else is their imagination (that type of thought).

    Email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse Online article by Dr Toft. He was President of the British Thyroid Association. Highlight question 6 and discuss with your GP the suggestion Dr T makes about the whereabouts of TSH and I bet you they will be surprised. I don't understand how they can be so certain - who told them that misinformation? If you click on my name you can read my profile. If you haven't completed yours you should do it too as it helps people to know about your history without asking you each time.

  • thanks so much for your reply. this is loads of help to me. unfortunately im not on line at home so just have to nip on it quickly at work. will fill in profile asap good luck and thanks x

  • Don't worry about not being on line as at least you may have an occasional chance at work. If you join the local library you can use their computers free of charge and just pay for anything you print off. I think mine charges 10p a sheet.

  • P.S thank god for your first aider!!

  • I'm really sorry to hear you are feeling so low. I think you should contact your doctor / endo / whoever prescribed your levo and tell them that you have felt suicidal over the weekend. Tell someone in your family or a friend or you could even call Samaritans, but don't suffer in silence.

    If you have the results of everything you had tested, post them with their lab ranges and people can comment. Get into the habit of asking your doctor for a copy of your results - with their lab ranges - 'for your records'. You are legally entitled to have them, some surgeries aren't keen and will try to charge, I believe you can ask to see your results and copy them down for yourself without charge.

    50mcg doesn't seem to be a very large dose but I'm not medically qualified, I know they start older people on a lower dose - I started at 50mcg a day and worked up to 100 before my treatment stopped so it seems a bit on the low side to me.

    If you haven't had your B12, vitamin D, ferritin and folates tested then you need t get them tested. You need all of those to be high in their ranges to help your thyroid to work. You should have T3, T4 and TSH checked but it might be hard to get your T3 tested - I never did and in the end I used a private agency from the list on the Thyroid UK website. It's worth going onto that site and reading as much as you can about thyroid problems.

    My hair fell out for a while because I was on my anti thyroid sprung for too long before I was gven levo as part of my block and replace therapy and if it's any comfort to you once my thyroid levels reached a good place it stopped falling out. I know how you feel, it really upset me a lot, it was really the last straw and drive me mad.

    I know I was hyper but my first post on here was 'will I ever feel normal again?' And the answer was 'yes' and I do, I didn't believe it was possible but I do and hopefully do will you. It's hard to imagine a little gland can have such an effect on your entire body and it's hard to believe how truly awful and totally exhausted a human being can feel but you will get there the end even if you don't feel like you will, hate stay t but it's probably early days yet.

  • Thanks so much for your very caring reply and all the info. I am feeling much better now and I started my period yesterday so I think that does obviously excacerbate it. when I had my bloods done I did ask the nurse was she testing t3 etc and she actually got quite impatient and said Im testing your thyroid levels just leave it to me and stop the research!! seriously. She told me that my symptoms were probably due to peri menopause and not thyroid. Its so frustrating. Anyway a week later I was told my cholesterol was high and white blood cells were high and tsh was borderline and this dr would not prescribe. so TWO weeks later I got the 25mcg from another doctor!! cant cope with the ignorance, cant believe it!! thank you and good luck ;)

  • What a nerve of the woman, so rude! I had the opposite I asked about my test results while having something else done - the nurse practitioner was really cross when she saw that I had only had TSH done and said she would follow that up - shortly after that I saw the doctor who kind of growled something about 'only needing to test TSH!' I did think 'load of rubbish' Think the nurse must have mentioned it, it certainly looked like doc was on a bit defensive.

    I was not impressed but I've basically bypassed the NHS and do my own testing with BlueHorizon, it isn't cheap but I get all the thyroid tests I want plus antibodies and a a few other things done. They use different lab ranges to my surgery but I figure it is all relative and it won't matter that much.

    Keep up your research, you can never know too much about your thyroid and you'll discover that a lot of people on here are more clued up than a lot of doctors, I couldn't have survived without the support I got on here, keep notes about how you feel and of all your results and personally I would take 'perimenapause not thyroid ' with a huge pinch of salt but that's just me. When I hear people saying they've been told that I'm always really glad I'm way to old to have to worry about all that.


  • No-Sparkle, you should have a follow up thyroid test 6-8 weeks after you started 75mcg. Most people are comfortable with TSH just above or below 1.0, so you may need a further increase. Arrange an early morning, fasting (water only) blood test as TSH is highest early and drops post-prandially. Take Levothyroxine after the blood draw.


  • Thank you so much. I really wouldnt have known that. I was takinkg the levo for about a year until I read to take it on an empty stomach!! no info from my doctor whatsoever. Thankyou ;)

  • Anyone who doesn't have a problem with their thyroid gland is unaware of the best way to have a blood test as we eventually find out if we join a forum. It all depends upon where our TSH is - not clinical symptoms, T4 or especially FT3. That also includes the medical profession.

  • Thanks. that is really scary to think what we are up against! Unfortunately I find that anyone without a thyroid problem is equally usympathetic and judgemental. I have had to break contact with some people who just refused to try to understand with a "whats wrong with you now?!" kind of attitude. But saying that I am not too interested in people these days anyway. My daughter and my grandchildren take all the spare energy I have.Thanks shaws

  • Are you starting to feel any improvement now No-Sparkle?

  • I am actually feeling a bit better thanks :) Im still quite tired but not as much I just seem to have crashes throughout the day but my coffee addiction doesnt help and my diet :/ My mood has improved though I have started to feel an exciteability late at night when I get home and try to settle and yet I dont have energy to go along with it so basically just have a busy head that stops me from sleeping!! thats nothing new but seems to be more intense. ah well I am thinking it will take a few weeks for me to see where the increase leaves me and have to wait for next bloods

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