Feeling confused

Hi I posted not long ago re weakness in my legs which had come on gradually and joint pain gp said it was due to my under active thyroid and she increased levothyroxne from 75mcg to 100 mcg . This seemed to help for a while and I thought she was right . I had a follow up blood test but could not get the results as my gp is off on leave and a locum doctor had written for my levothyroxibe to go back down to 75mcg . IV been on this a week now and the weakness and joint pain have come back , I'm sooo confused and as I feel I'm not in control and don't know the results and don't know why this has come back . I had an under active thyroid for 10 years with no trouble but since I had an episode where my levels went high with horrible symptoms and since then have been up and down like a yo yo . I tested positive for antibodies so I know it prob is hashimotos ! I just don't understand why IV all of a sudden started to get the weakness and joint pain and I never did before . It's quite scary and I'm so angry I can't get results . I really don't have a lot of faith in my doctor as you can tell . It's all leaving me feeling anxious and depressed x

28 Replies

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  • Andypandy30 Just because your GP is on leave is no reason for you not to get your results. They will have been seen by a doctor so go and ask for a print out. If you're given any excuses for not being given them remind them that you are legally entitled to them under the Data Protection Act 1998 and you're sure no-one there would be wanting to break the law. If they won't print them ask them to tell you what they are and write them down, with their reference ranges.

    Once you have them make a new thread and post the results for members to comment.

  • Thank you . Yes it is not on at all I'm so upset over this . All I need are the numbers they have refused twice so I will hav to try this . If my results show why my dose was reduced then I will understand why I have the symptoms back . It's the lack of control as I know my own body and if she asks then I would have no qualms saying I disrust them and I do give the. Their place but they do not give me mine as a patient with rights!

  • It is a pity doctors adjust doses according to the TSH to try to keep it within a 'range'. However they don't appear to know that the TSH drops throughout the day, so if he took it 10 times he'd have a different result all of the time.

    Do you remember to get the blood tests at the very earliest - fasting - you can drink water - and allow 24 hour gap approx between your last dose of levo and the test?

  • Yes shaws I do . And I agree . I'm nearly tempted to try the extra 25mcg whilst I'm waiting on them getting back to me 😤What do you think ?

  • I also had a cold at the time of testing x

  • I would. Too low a dose can backfire. Only if someone was extremely frail with a heart disease would be treated with caution.

  • Thank you clutter . I know what to look out for . I know my own body. And can decrease again if need be or alternate . Just wanted the encouragement . I have 25s I will take an extra. My own gp who seems to have disappeared knows that I can tell if I need a decrease I just never tried an increase on my own . Thank you

  • Andypandy30,

    The Data Protection Act entitles patients to their results. Ask the senior receptionist or practice manager for a printout of your results and ranges.

  • Thank you clutter IV left 3 messages today as I wasn't able to go due to weakness but am praying for reprieve to go tomorrow . I might ring my out of hours doctor who will just be a stranger but will be able to read them out to me off computer until I get print out .

  • It will have to be practice manager thank you clutter I'm just sad about it all and feel so uncared for x

  • nhs.uk/chq/pages/1309.aspx?...

    The above link takes you to the NHS website and tells you about obtaining YOUR results Andypandy30 :-)

  • joint pain and weak legs (they feel heavy like lead) are 2 of my first signs of getting hypo, also really painful feet, heels and ankles. Sometimes it just means i have been over doing it and used up my stores or it means an increase needed tbh 75-100 mcg is a very low dose. Get your results that will let you know if you are under medicated xx

  • Binkie do u think I could try increase myself ?iv had a rough day tday .

  • its up to you but its worth a try you are on a very small dose. Dont go mad and remember it takes a while to have an effect. If it was me and remember i have no medical background i would go back up to 100 as you felt better then, 25 is a small increase. Have a strong word with locum/dr why have you been reduced and look at the effect it has had, did you agree to the decrease? it is not a dictatorship you have a say in your treatment.

    Next time you have a blood test do not take your meds for 24 hours so your tests are not looking good, it just makes them nervous they prefer you to stay a bit under medicated (my experience)

    Hashimotos is not a take one tablet daily and you will be well, it is a minefield. For some of us levo doesnt work and we feel better on other thyroid meds. Try and stay calm as stress makes us worse xx

  • Thank you yes I agree with all you've said . And the fact that I felt better on the higher dose . Tsh was 39 prior to the increase to 100 mcg and this was the first time I felt these symptoms . I never felt this weakness before . So after a week when i felt an improvement I was content to stay on it . Tsh was down to 3.5. Got another blood test and that's the results I'm waiting on . Yes agree about stress . If GPs and receptionists had any idea the effects of this disease as per individual . Trying very hard to stay calm . I am taking 50 and a 25 so might take another 25 is that OK to do that to make up the 100 .?

  • yes, it has worked before at 100 so i would go back to 100 it is still a very low dose.

  • One of our sympathetic doctors - not an endo - said that nowadays we are given too low a dose of thyroid hormones, whereas before blood tests were introduced the usual dose of NDT were between 200 and 400mcg. This is part of an excerpt and it is a pity that Dr Skinner's patients are convinced that due the harrassment of him through the GMC brought about his demise through a stroke:

    Dr Skinner vigorously opposed certain aspects of the UK Guidelines at the time they were being formulated and lodged his ‘Document of Record concerning UK Guidelines for thyroid function tests’ in 2005 with all the Royal Colleges, National and Local Health Organisations, the British Medical Association and tried with the Society for Endocrinology who rejected it. He also wrote to Dr G H Beastall, Secretary, Guidelines Development Group, British Thyroid Foundation in 2005 to comment on the pitfalls in the proposed guidelines.

    It is disappointing that Dr Skinner’s medical colleagues have been and still are behaving like bullies in a playground forming their gangs and stopping all others from engaging with doctors they have chosen to cast out of their inner circle. Sadly, they have neglected their duty in caring for these patients resulting in a serious shortfall in their medical care leading to unnecessary suffering and years of mental and physical ill health.

    These Endocrinologists and General Practitioners have harassed Dr Skinner and doctors like him and instead of constructive scientific discussions have resorted to firing their guns from the shoulders of the General Medical Council and patients and their needs have been completely forgotten. It takes a great deal of courage and determination to persevere in the face of such adversity and Dr Skinner’s bravery and belief in doing the best for his patients brought respect and loyalty from all those who knew him.

    This is borne out by numerous patients attending the General Medical Council every time Dr Skinner appeared before them and by more than 2500 testimonials from patients presented before the General Medical Council at his Hearings.

    By their own admission, the majority of Endocrinologists and General Practitioners would not treat the patients who were treated by Dr Skinner so they have no experience of diagnosing and treating these patients. Dr Skinner successfully treated thousands of these patients and accumulated a vast treasure of information including blood tests and clinical signs and symptoms at their first consultation and at follow-up.


  • Thank you for the link Marz and taking the time to answer . And Binkie yes I felt OK on the 100mcg levo I mean I wasn't fabulous but I personally feel this stand in doctor has very quickly judged on the results of that particular day and decreased the dose without knowing my history but IV been used to this in the past it's just that I thought I was over the heavy legs feeling and a week after he/ she decreased my levo it came back . I like to be my own advocate as they always mess me around but that's hard to do when the practice withholds the blood results . I will sort this and update thank you x

  • Hi Andypandy never ever let the doctor tell you what to do regards your levo. If you feel good on a certain dose then argue the point and tell him that you really don't want to drop it as you feel better on the dose that you are taking. It is a two way thing.

    Jo xx

  • Thank you jo , IV had another bad day but increased back to 100 mcg . Didn't sleep well but feeling very down and weepy after another fight to get blood results . I don't know if it's because I'm needing the increase or because I feel so let down by doctor .i def felt better on the higher dose no muscle weakness or joint pain and I know it can take a while to work . I definitely had the instinct not to lower my dose last week and I was right . It is a 2 way thing I just can't get that through to them . I'm going elsewhere again .

  • Are you in the U.K.? If so, have you tried registering for Patient Access? Most (all?) surgeries provide it and some (no idea what proportion - 5%? 95%?) are set up so you can log in and see your blood test results online, and the system will even download them all to your PC in PDF format. I can see all my results back to my first ever test in 2005. It's free as it's part of the NHS push for cost reduction, better informed patients, reducing their workload etc. Though not all surgeries see it that way - I can see my results, but a friend who's registered at a different surgery a 5 or 6 minute walk from mine can't see his! It can be quite fast, too. My fastest was 24 hours (blood draw one morning, results available online when I logged in to check the following morning).

  • Oh my I didn't reAlise this info thank u I will try it x

  • You can go into the surgery to do it, or go to their website and start the process online by following the instructions. No idea how to do it online, I just know it can be done - I went in to do it in person as they are only a few minutes walk from home.

  • No luck but thank you so much for the info it's in England only x

  • Really? With it being an NHS thing I would have thought it would be the whole UK, including IoM and Channel Islands. That does surprise me.

  • If I understand correctly, Scottish NHS and Welsh NHS (GIG) are not the same body as England's NHS. Isle of Man and Channel Islands are also entirely outwith NHS.

    Northern Ireland is also distinct and covers social as well as health.

    A lot of reporting about the NHS simply assumes England, or is unaware of the separations/distinctions.

  • Thank you both x

  • Can I add to this thread iv increased 4 days ago . Weakness and aches seem to be improving although I feel very out of sorts and confused at times is this normal after increasing x

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