GPs at my practice very reluctant to prescribe thyroxine and very unsympathetic!

My latest blood tests were 4.85 TSH and 11.4 free T4

In June my TSH was 6

In March 2014 I had TSH 2.7 and free T4 13.3

Two GPs at my practice said I was normal and that thyroxine was not appropriate. I got very insistent with the second GP because I am very symptomatic and she has reluctantly prescribed me 50mg as a trial. This GP thinks I just need to lose weight and take an antidepressant but I don't think I am depressed. I am a size 16 so losing weight would be sensible but it's hardly likely to cure all my symptoms, the worst of which is chronic fatigue.

The GP made me feel like a real trouble maker, she was hugely unsympathetic and seemed utterly uninterested in any of my symptoms just focussing on my weight, and I dread going back to her now.

Do you think I am reasonable to want to try thyroxine? I have loads of the symptoms on the thyroid uk checklist.

22 Replies

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  • Yes, I do! Most definitely. A TSH of 6 is hypo. But, the problem is, doctors know very little about thyroid, and have no idea what the symptoms of hypo are - or that weight-gain is one of them! And they much prefer to blame the patient and prescribe antidepressants, than try and find the right way to make the patient well.

    This is a universal problem, I'm afraid. And you have to learn to stand your ground - if anything, be more arrogant than the doctors themselves! But, above all, learn about your disease, so that you can show them you know what you're talking about. If they sense that, they are more likely to stop handing out the BS and take you seriously. Tell her you'll lose weight when she puts you on a decent dose of thyroid hormone replacement, because it is well documented that having low T3 makes you put on weight. I bet she doesn't even know what T3 is! :)

  • Thank you so much for your reply grey goose, it's so hard when your doctors seem to be against you and I find it really hard to stand my ground. I did arm myself with the Anthony Toft book and without that and info from the website and from friends I would not have left with a prescription.

    I don't want a relationship with my GP where I have to fight with them to try thyroxine and where they are uninterested in helping me with symptoms that are so severe I have been unable to work at all for two years.

    I'm thinking of trying all the different GPs at my practice and if I can't find a decent one moving practice until I do! But it seems so ridiculous to have to do this.

    It's good to have some reassurance that I'm not as unreasonable about this as my GP is making out.

  • It's probably a form of self preservation on the part of your GP. She's out of her depth but can't admit it. It's a terrible situation, but you won't be the first thyroid patient to have to do the rounds of all the available doctors in an attempt to get treatment.

  • You are not being unreasonable, just taking responsibility for your own health. Most of us on here have had to resort to DIY health. You will get plenty of help on here.Of course they are all obsessed about patient weight because that is what they get paid for, results with patient weight loss!!

    Did you have your blood test done first thing in morning after fasting overnight? They (NHS) will tell you it is not necessary to fast before the test, they won't even tell you not to take your thyroid medication for 24 hours before the test!

    An early morning fasting test should help to nudge your TSH value up a bit! A blood test from Blue Horizon (finger prick at home and send in post) will give you TSH, T4 and T3 results you should also have ferritin, iron, folate and Vit B12 tested and Vit D.come back here with results for further help. Having high in the range levels of Vits etc will help you to absorb your medication better. If you need supplements to improve your Vit levels etc, don't try them all at once start one at a time to check for any adverse reactions.

    Even when on levo it will take time to get your levels right and to feel better. The GP should check you every 6 weeks or so to see if your levo needs to be increased.

    Hope you begin to feel some improvement.

  • Thank you very much for your helpful reply Crimple. My blood test was done at 1.30pm but I wil definitely do the next one at 9am now that I know.

    My Vit D was tested and is normal but B12, folate and ferritin weren't tested for. Do you think it's worth me doing a blue horizon test at this point?

  • Do the test at 8am if you possibly can. 9am would be the latest you should do it.

  • Do you have the result of Vit D test. GP "normal" isn't necessarily normal!

    With respect to BH testing, I am too impatient to wait for GP to decide if they will or won't test this or that and anyway the biochemistry lab at the hospital usually decides what they will or won't test. Most people on here never get a T3 test and almost as many never get a T4 test on NHS. TSH is the gold standard- NOT.

    My health only really improved after seeking advice on here and taking matters into my own hands. I let the GP request a TSH test from hospital and then I organise my BH test of everything (their 10 test finger prick postal service.) The results are mine and I track them on a graph. My T4 and T3 are still too low in spite of near zero TSH which has GP panicking and talking about osteoporosis and heart attacks! I said it's my health, my body and I would rather have a life!

    My improved health has left me rather stroppy! too many years of ill health!

  • Never accept 'normal' 'o.k' or 'fine' in connection with blood tests. It's o.k. if not hypo but if hypo we need a TSH of 1 and FT4 and FT3's towards the upper range.Always get a print-out for your own records - with the ranges..

  • TSH of 1 or less

  • Does any one feel like I do that I really want to buy a copy of say Dr. Kharrazian's book "Why do I still have thyroid symptoms ..." and donate it to my GP surgery? I even wanted to send one to the Endo Consultant too. They know so little and they have a duty to update their knowledge just as they should regarding diabetic dietary advice, the medical world is changing and they should keep up otherwise what use are they to their patients?

  • They get reprimanded if they don't keep to the guidelines. A few doctors have been reprimanded and appeared before the GMC for daring to do as they were trained as medical students some were struck off (I believe), one resigned his licence to consult and help patients had to source their own hormones. Another appeared before the GMC about 7 times, I believe who then died of a stroke. He also, previously, had written to the BTA and every endocrinologist to discuss the parlous situation of patients being undiagnosed due to the guidelines and not one Endo accepted - the last pulled out the day before the 'conference'.

  • If you are symptomatic with a TSH of 6 you are hypothyroid. The problem is that the medical profession in the UK have been given 'guidelines' that say we've not to get medication until it reaches 10. Mine was allowed to reach 100 as no one did a blood test.

    In other countries if you have a TSH around 3 you will be prescribed. This is from Thyroiduk.org our website.

    In reality your doctor should do all the tests stated in the link but they wont. It easy for them, just take the TSH and make a decision whilst ignoring the clinical symptoms.

    Blood tests should be the very earliest possible, and fasting although you can drink water. Leave about 24 hours between your last dose of levo and the test and take it afterwards.

    Always get a print-out of your results with the ranges (ranges are important as labs differ) and helpful for membes to comment.

    Go back to GP, ask for antibodies to be tested as the commonest form of hypo is Hashimoto's which is with antibodies. It is the commonest form of hypothyroidism and also known as Autoimmune Thyroid Disease.

    She should aslo test Vit D, Vit B12, iron, ferritin and folate as we are usually deficient as well.

  • So pleased at last i found someone with tsh of 100 mine was 98.50 . What was your free t 4 and free t 3 ? I was severely ill ?

  • I knew nothing about hypo and had no clue about blood tests. Never asked for copies - I didn't ask or know about Frees then. Just was grateful to be diagnosed but It has been a slow, slow progress and thanks to internet and TUK I am fine now, thankfully.

    Hope you get better soon.

  • have they bothered to test thyroid antibodies ?

    because a tsh over 5 with positive antibodies legally requires they treat you for hypothyroid

    its vital that ferritin

    folate

    b12

    vit d3 are tested

    because hypothyroid trashes a vast array of vitamins and unless the 4 above are at least halfway in their ranges your body cannot even utilise the levothyroxine

  • Im afraid you will have to abandon the idea of a nice little friendly non confrontational relationship with your GP-unless you are one of those rare lucky patients who have the good fortune to be with a well informed GP. These days I am always polite but well researched and knowledgeable about my condition. They may not like it but they respect me and I have slowly but surely got the type of treatment I need at the dose I need. Consequently I am well. If I had left it in the GPs hands this would NOT have happened. I dread to think what state I would be in. One things for sure I would be suffering -they would not!

    On top of this it is wise to find the most co-operative helpful GP in the practise and stick with them. When I could get no further I went private and at one point had to buy my meds and effectively self treat. I became well -my GPs were amazed and acknowledged that I was doing miles better then when under their care......eventually getting the treatment I needed on the NHS. All this was long haul and a hard won battle. It shouldnt be like that but it is.......dont put up with being palmed off and platitudes.....such stuff will NOT get you better!! Read, read, read -knowledge is power!

  • Thank you so much waveylines for your advice and encouragement. I am definitely going to follow your advice, it's hard to do and even harder when you are ill but I think I'm not going to ever get well unless I take control of my own health and start to stand up to GPs. I am so grateful for the advice, encouragement and knowledge of others.

  • The NICE guidelines allow for treatment with a tsh below 10 if a patient is symptomatic which you are. the link is at the bottom of my profile.

    I changed GP practice and it was the way I was finally diagnosed after 6.5 years of hell. I asked all my local friends for recommendations and went with the practice recommended by a friend who has a challenging personality....

    I haven't looked back except to wonder why I didn't do it before.

    So, you're not being difficult you are just protecting yourself!

    Good luck

  • Tupennyrush that is such a helpful way to see things as protecting myself, thank you so much. This will really help me to stand firm with my GPs.

    I ordered the private tests this morning for thyroid 10+ and active B12. Knowledge is power!

  • Hi unfortuantely having a thyroid problem is not easy to be heard by drs or hospitals, but you have to be heard. The criteria for hospitals is that they don't treat when your tsh is below 10 yet your tsh when you do get the golden ticket they like to keep it as close to 2 as possible. I gained my golden ticket by being let down by drs then when i got to see the hospital endocrinologists got further let down. Levothyroxine made me have severe migraines and my days were spent vomtiiting. I was only borderline then. I came off the meds as they said i could thankfully too. But in 6 months i had several appointmnets cancelled by them and therefore they did not check my blood. I went from bordeline to full blown overt thyroid disease. My tsh was 98.50 my thyroxine was nil detectable. That was 2011. Its been a hell ride i could not tolerate levothyroxine so had to go through over a yr on it while the board decided i could have T3 I still get so ill, although some parts of my health are slightly better i am so ill, you have to fight i had little knowledge to do so i still get fobbed off now. Am so lucky my sister stepped in to keep fighting as am to weak to donit at times. I think its a pretty scarey carry on when no help available with such a chronic debiltating disease. I would love to hear from anyone has been so severe who is of course still here go tell there story.

  • Brook it is so shocking how little help you seem to have had from the medical profession, so many GPs seem to have no interest in helping people with debilitating conditions and I find this quite bewildering.

  • No you got it love if the illness is not bad enough thing to deal with its a constant nightmare with drs. I am a so called rare case. Disagree. They thought at one bit i had hashimotos encephalopathy i agreed with it .not found any dr or neurologists who yet have a clue.pretty bad really when your so ill.

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