Anyone else feel there thyroid health is neglected by the professionals?

Hi I'm new to this forum so I'm just feeling my way about. I'd like to know if anyone else in the Uk has experienced a complete lack of care concerning hypothyroidism. I was diagnosed with Graves' disease aged 16 and hyperthyroidism. I developed a huge goitre and my left began to pertrude comically. I had a thyroidectomy in 1999 and then became hypothyroid. I've been on Levythyroxine between 150 and 200mcg daily. No longer seen by an endocrinologist, I'm left to the care of my Gp . Who only checks up on thyroid levels once in a blue moon when I have to see her usually because other health problems I have after suffering two brain haemorrhages in the last 4 years. I suffer from cramps in the legs and hands, constant headache , hair loss, depression. Yet there is no care I'm simply just left to getting my repeat prescription. I feel so neglected. And I'm struggling to do my job and cope with life in general from constantly feeling unwell😔

35 Replies

  • Good morning,

    I'm newly diagnosed and just finding out about the whole sorry state of thyroid treatment.

    There is a huge wealth of knowledge (and other treatment options) on here and if you look on Stop The Thyroid Madness either fb page or website too there is much help, friendly info and light at the end of the tunnel.

    I hope that helps


  • Sorry to hear you are struggling just now. I'm new to this all myself having had a thyroidectomy due to Graves hyperthyroidism last year. There is a lot of info on here which is helpful I found, I got my vitamin D tested and started supplementing with vitamin D, vitamin K and magnesium and after two weeks really felt the benefit. so I think it seems like a lot of the management of the issues we have are down to us but there is support available through this forum and other similar places from people who are experiencing the same or similar issues. Hope you are feeling better soon, you have been through a lot with two brain haemorrhages in the last few years! Hugs!

  • I think it could be dangerous to expect jjwayne to follow all the instructions pinojenes has posted, even if she had the energy to do so. She needs simple and tested help to get her back on track. Good luck to her.

  • Everyone!!

  • Can you get your last blood test results and post on here, people will then advise on your results.

    Have you had Vit D, B12, folate, feretin tested?

  • Yes I think that thyroid conditions are very poorly treated which is why so many people take matters into their own hands. Such as ordering private bloods and looking at the whole panel not just TSH but FT3 FT4 and thyroid anti bodies also b12 folate ferritin and vit d. All these need to be optimal ( not just normal ) to convert to t3. Eg ferritin - should be around 70-90 to convert bit if you are even 0.1 within range the NHS deems you normal. Ditto other bloods I've mentioned. The book sttm is a good read. Hope you feel better soon.

  • Wishingwell you have posted a very helpful response. I am at the stage of having tests done privately so that I can have the full panel. Ive tried endocrinologists. one private and the other NHS and although I have benign nodules and originally very high antibodies neither are at all interested in testing for antibodies. They were both interested in just TSH levels, als Having reduced antibodies to negative by paying for support from a nutritionist - now taking iodine supplements and am GF I would like to keep my numbers monitored to avoid further damage to my thyroid.

  • Very sad for you and I understand as I've struggled with similar experiences from my GP!s

    I live in Australia so its world wide I think and I had to see 10 different doctors to get a diagnosis!

    My was complicated by menapause but it was ridiculous how I was ignored and mis diagnosed!

    Given diagnosis of chronic fatigue, and then given plan to see psychiatrist eek !

    I do it myself currently and would like the support of a medical professional but I've had not much luck in that area !

    I hope you find the right health professionals I've heard intergrated doctors are great value!

    Best of British luck!

  • I've seen endocrinologists in Ireland, England and America and its always been the same (for graves disease) - threaten, terrify and ignore! I often feel thyroid patients should organize and cause a real fuss, even make a documentary or something! It's criminal how we are treated - I truly believe that!!

  • Start reading and researching, it takes longer when you dont feel well but its worth it. I have my thyroid removed due to goitre 2009 no one did any follow up, i kept saying i didnt feel well, weight gain, exhaustion, pain etc and my dr kept saying my thyroid worked perfectly well! this is what we are up against.

    I went 6 years with no treatment at all and became house bound, unable to stay awake for more than an hour, in chronic pain. I joined the forums, read everything made lists, got really stern with my dr (who apologized later) i got all my tests done, started on NDT took supplements. I started to get better really quickly. Iv had some crashes when bullied on levo by my endo but now on the right road.

    Tbh its shocking the way we are fobbed off, left to my GP i think i would be dead by now, i was so ill and being given hundreds of tablets for pain, my digestive system was closing down, chronic anxiety, eczema, the list is endless of my symptoms, all in the top hypo list.

    I now know i have to take responsibility for my health as Dr's seem clueless.

    You will find everything you need here, best wishes.

  • We are treated very badly anyou must take your treatment into your own hands or die a long drawn out and painful death by doctors!

  • Hi Jjwayne

    Welcome to the Forum!! Oh yes you can say that again!!!! I am finding it's as if you are making the symptoms up!!! With the Endo and gps .. its a sad state of affairs really. This forum has helped me to gain knowledge on my hypothyroidism and I'm making improvements slowly. Keep posting and you will get lots of advice xxxx

  • There has been nothing professional about the NHS doctors I've seen over the years. They wouldn't last 5 minutes in the private sector.

  • Health care has changed if you don't pursue it and, in part, manage your Illness yourself nothing happens.

    Go see you GP and make sure your bloods are checked regularly

  • Ive been telling my doctor that my thyroid treatment isnt working.

    I went and had a blood test and it showed my levels had dropped even on 100mu.

    So theyve put me up to 150mu as of today.

    So...No they dont always listen. I dont think they really know alot about it or care really.

  • This sounds awful - I really feel for you. The first thing I would do is call your doctors surgery and ask for the full read of your last bloods and the ranges. I've found this the best way to have a good conversation with my GP - when my meds were reduced and I started to gain weight, feel exhausted, have joint problems I arranged another blood test and got the results from the surgery before I next met with the doctors so that I could try and understand them myself.

    I'm lucky as I have a good GP who does listen and my results though within range for Free T3 had dropped from the upper end of range to the bottom so this armed with my symptoms gave me enough confidence to challenge my medication, and he agreed to increase them back to previous with a follow up blood test in 4-6 weeks. He is also going to run a full blood check in 4-6 weeks to check for Vit B12, D and Ferratin deficiencies.

    You should be getting an annual Thyroid check when your meds are stable, if they're not stable and you're feeling awful then they should be more regular until your meds are stable and you feel well.

    There is a magnitude of fantastic advice on this site too so if you need confidence before going in front of your doctor and challenging her then get some facts to take with you.

    Really hope you get this sorted soon.

  • Surprised this question hasn't broken the site. :-)

    In addition to all the good advice above (esp to get your results, you must do that to know where you are) I'd add that even when doctors don't seem to care what's going on they often sharpen up once you call them on it. Mine seemed indifferent but when I brought in the Dr Toft book he acknowledged that many people don't feel better until their tsh is under 1 and agreed to raise my dose. We had that amusing convo that goes:

    Dr: Too much levo can damage your heart.

    Me: So can too little.

    My point is that you mustn't feel intimidated by indifference. In my experience it seems like for at least the last 25yrs the NHS motto has been 'I will do nothing this time but come back when it becomes unbearable' so you really have to do the legwork. And of course if your doctor is really useless you can always find a new one.

    Good luck!

  • Welcome to the world of cr@ppy thyroid care Jjwayne . Your story is so familiar and the reason why most of us are here :(

    Your cramps and hair loss may be due to nutritional deficiencies. Your depression might be connected with being under medicated and still experiencing symptoms of hypothyroidism.

    Thyroid tests should be done once a year so you can always ring the surgery and arrange that. Always book the first appointment of the day, fast overnight (you can have water), and leave off Levo for 24 hours (take after the blood draw). Two reasons for this. Firstly it will give you the highest possible TSH which is useful if looking for an increase in dose or to avoid a reduction. Secondly, it means the conditions are the same every time so you get a like for like comparison.

    Always ask for a print out of your results with the reference ranges, you are legally entitled to them under the Data Protection Act. Keep a record of your tests, time, dose of levo, results, reference ranges, how you feel, etc. Then you have a base for discussing things with your GP.

    Are you taking your Levo on an empty stomach, one hour before or two hours after food, with water only, no tea, coffee, milk, and away from any other meds and supplements?

    Do you have your latest results? If so, post them on the forum for members to comment.

    Ask your GP to test Vit D, B12, Folate and Ferritin. All these need to be at optimal levels (not just in range) for thyroid hormone to work properly. If your GP won't test them we can tell you where to get a simple fingerprick test to do at home. I think you might find you are a bit low in some of them. Post the results and members will comment and suggest supplements where there are any deficiencies.

  • great that you have a gp that actually seems to know a little about ''thyroid problems '' - which are sadly lacking in gp's knowledge - , and also that a follow up blood test was made for 4-6 weeks after medication change [ up or down ] as it takes that time for the meds to hit the system , but , I have found that the full tests should be carried out at EVERY test to include tsh / t3 /t4 / ferretin / folate / vit D3 and vit B12 --- and all need to be read together to show the optimum treatment regime ..... lastly it is far better to insist on a blood test for all of the above every 3 months NOT annually so that any adjustments can be made with virtual immediate effect ---- for the betterment of the patients health AND the benefit of the gp's time and costs .................... this has worked for us and continues to do so

  • If you've had a TT the very least the doctor can do is add T3 to your T4. I am always astonished that they leave you to suffer with continuing clinical symptoms.

    Start at the beginning - request a complete new Full Thyroid Function Test (if GP wont we have recommended labs that will do so). It might be worth it as members will certainly come to your aid with advice and help as nearly all of the members have arrived here due to struggling along with bad advice from the supposed to be 'experts'.

    Two scientific documents have proved that many people feel better when T3 is added to T4 and that's for 'ordinary' who still have their failing gland. Ask GP to do B12, Vit D, iron, ferritin and folate.

    Blood tests should be the very eariest possible, fasting (you can drink water). Leave 24 hours between your last dose of levo and the test and take afterwards.

    Get print-out with the ranges from the surgery and post them for comments.

    Also, leave should be taken on an empty stomach with one full glass of water and wait about an hour before eating.

  • Hello Jjwayne, I am also fairly new to this forum and have just posted today for only the second time. Like you I have a catalogue of problems that GP's have ignored or simply want to give me more drugs like antidepressants and BP meds. Will watch me get worse on levothyroxine and just keep increasing the dose even though my hypothyroid symptoms remain and are not at all treated. Eventually the private Dr I saw commented that I was suffering from being overdosed on Levo but with all hypothyroid symptoms too.So although different to your own experience I agree that there is little help available through our NHS Gp's. If anyone has found differently then I would like to hear from them. However don't give up, I believe that although it seems slow there is more research being done. I am looking at the website for at present which is very interesting. I think we need to do our own research and with help from Thyroid Uk it is possible to get the help we need.

  • A rant, for which I apologise in advance.

    It is the misfortune for most of us that we are women. And for the men on the forum it is their misfortune to have a condition mostly associated with women.

    Doctors think that women are untrustworthy when it comes to reporting their experiences of living in their own bodies. They think that we exaggerate, lie, seek attention, are depressed, anxious, nervous, and stupid. And as a result we can be fobbed off or offered anti-depressants and sent on our way, because after all, if a doctor can't find anything physically wrong then a doctor always outranks a woman. It doesn't matter that in most cases the doctor jumped straight for the prescription pad, didn't actually look at the patient or examine them in any way, doesn't have any qualifications in psychiatry, didn't listen to the patient. Those things don't matter. She's a woman and she can be dismissed.

    The only thing we can do is help ourselves while we still can.

    Welcome to the forum. :)

  • Chapeau humanbean and agree with you 100%.

  • Absolutely. I've had all this and more (I've been threatened too).

    Hypothyroidism Is A Feminist Issue! Seriously, someone should write that book...

  • Hi Jj, I'm afraid these responses may crash this website and all agree thyroid health is so neglected it is egregious and perhaps criminal. Learn as much as you can because even without professionals you can find your way to better health.

  • Heloise is dead right. You have to study this whole problem yourself. Use your doc to get blood tests and if you have to hassle for that, get your own private blood tests. This might be expensive at first but once you know where you are and what your body reacts to, you will only need tests once a year after that. Your doc is not your best friend in all this, your ability to research your problem yourself is your most important asset.

    Don't worry about changing docs, I am on my 4th, he is OK, not great but he prescribed me NDT and I have to lie to him about my dose (I am usually 1/2 grain over what he thinks). but he does a few (useless) tests per year, usually TSH and TT4. Hang in there, there is a solution for everyone - they are all different for each individual unfortunately. But with persistence, you will get there.

  • I'm glad you can use the NHS to your advantage, LAHs. A bit of discretion wisely used is a very good thing.

  • So many of us appear to have been treated as badly as you by the NHS. Take very good care of yourself and keep building up your self esteem. There is lots of web sites but need a lot of reading.

    Gluten and dairy free diets helped my absorption much that I had to half my levothyroxine I take.........please watch out for this, it can be scary as it happens quite quickly. The very best of luck and good wishes on your new journey. X

  • Well my friend has it won't take any meds at all she always complains of feeling crap and tired she just eats healthy wich seems to help her. She says there's no cure for hypothyroidism so pointless taking meds ano she's mad but she's been like it 7 year x

  • Above all, Jjwayne, you must be strong and decide for yourself what is best for you based upon how you feel. This is essential as so many doctors simply overwhelm their thyroid patients with the rubbish recommendations that are fed to them by those who give us the impression that they are uder the direct control of BIG PHARMA. BP thinks much more about the health of their balance sheets, of course, rather than the health of the patients.

    So start the ball rolling towards your good health by posting your latest blood tests on a new thread here.That should give others, who know far more than I do, a good start in that direction. You SHOULD be having an ANNUAL blood test. Your doctor MUST give you a copy of the tests if you request one. With any luck you may find that you need a simple increase in dosage, that some other hormone may need a boost or you need to stop eating certain foods.

    If all that fails, which I suspect may happen as you have no thyroid, then the next step is to try T3, which again may fail, in which case you need to take NDT. But one step at a time - firstly read up as much as you can here and on other forums that may be mentioned here and gen yourself up so you can have some knowledge and confidence about the subject when you speak with health professionals, as you will then know far more than they do.

    All the best to you and now get started on improving yourself........

  • Hello Jjwayne,,,I am under active thyroid person,,,and I only get my monthly prescription, and nothing else. My reading was different and the dsn suggested that my dose may need to be lowered,,but up to now I have not done this,,as I have not seen the gp,,,I only go and see the gp, when I really have to,,,so I also have the fatigue, etc,on many days,,,,just keep going,,and don't let things get me down too much,,,,may be your gp could order a full set of bloods, covering all aspects,,to check that there is nothing out of balance,,,goo luck,,,ttfn from karen.

  • Hi Jjwayne, There is a FREE internet seminar on the 19th January from experts around the world titled `The Thyroid Secret` I`ll give you the website to register your first name & email address. This will help us all.

  • I've just been told that I'm boderline hypothyroid. The only advice I got was to lose some weight and come back for blood tests in the next few months. I've been having problems for a few years but it was not enough for the doctor to take notice so I hadn't had it checked up until now. I was wondering why I felt colder this winter even though I recall not feeling the same way for similar winter temperatures in the past. My menstruation pattern changed too.

  • People all over the world have experienced lack of competent thyroid care.

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