UK hypothyroidism treatment

After having hypothyroidism for 15 years or more I feel so let down by the UK doctors. In this time I have never felt well on thyroxine and also never seen a thyroid specialist. How strange is that. Symptoms, stomach issues, eye issues, bad muscle aches and pains, back pain, feeling hot and feeling cold, depression, anxiety, extreme fatigue, dry skin, very dry skin on feet with cracks appearing, fog and memory problems, palpitations so doctor dropped tablets from 175 mg to 100 and caused very bad blood results so up they go again and back come palpitations. Recently went to pharmacy and needed a carrier bag for medications. This is utter madness. When are doctors in the UK going to move ahead with this problem. We are still in the dark ages.

I would like to also know if UK offers desiccated thyroid hormone on prescription so I can try the alternative. I read, read and read about thyroid problems are gps doing the same. Feel like I am so alone and just continually going downhill until the next problem shows itself. Sorry but this illness gets you feeling like this. I will go on looking for an answer. Hope the national health service does too.

21 Replies

  • HI Cuggyd,

    Sorry to hear about your health. I have no knowledge of hypothyroidism, but to me if you want a referral to a Consultant or even a Consultant at another hospital your GP should arrange it. Remember that doctors are human and not all the same so a change may be in order.

    Have you tried hypothyroidism.supportgroup... the March 11 posting includes some books etc.


  • Hi - I am Hypo too and have been on the Thyroid UK forum of Health Unlocked for the past three years. You can click onto my name and read my much edited Profile ! - just so you know a bit about me !

    Do you have any recent blood test results that you can post - with their ranges as labs differ. It sounds as if you are under medicated - and you should never have your dose changed based on your blood results. How you feel is so important - but Docs of today are not trained that way.

    Have you had the following tested ? B12 - Ferritin - Folate - Iron - VitD....They need to be optimal for you to feel well and for your thyroid medication to work well.

    Your TSH should be 1 or under - The FT4 in the upper quarter of the range and the FT3 in the upper third. Do not accept any Doc telling you your results are NORMAL - normal for who ? Within the reference range maybe - but not optimal for people with a thyroid problem. Have you had your Thyroid Anti-bodies tested ?

    You mention the bag of medicines you take - what are they for ? Low thyroid can be indicated in over 300 conditions.

    Some Docs do prescribe NDT - if you come onto the Thyroid UK forum you can ask the question or go to the MAIN Thyroid UK Website where you will find all the relevant information about obtaining NDT.

    Are you taking your T4 medication an hour away from food or supplements or any other drugs....

    Happy to help if you have any questions....

  • You are really in a terrible state. People may not believe this but the guidelines for treating hypothyroidism are archiac. Before the blood tests were introduced along with levothyroxine, we were diagnosed by doctors who had knowledge of the clinical symptoms, they took family history as well as our own and the patient was given Natural Dessicated Thyroid Hormones on a trial basis.

    Is it not strange that since then (around 1960's) that people were complaining of symptoms which weren't recognised because the 'TSH' was 'in range'. Eventually, after about ten years 'new' diseases were named, mainly:

    Fibromyalgia, Chronic Fatigue Syndrome, and M.E.

    Now, I know these aren't hypothyroidism but since 1892 to the 60's people were treated on symptoms/history and thyroid hormones (NDT) prescribed and there were no such named 'diseases'.

    Around the '70's because of the puzzlement by many Consultants about their patients' clinical symptoms who were then sent to a Virologist as it was thought that these might be due to a 'virus' but the 'expert' found that the majority who were sent had 'clinical symptoms' of hypothyroidism and given a trial of thyroid hormones who then recovered their health. This doctor as a trainee medical student knew all the clinical symptoms of hypo and could tell just by the 'look' of the patient what the problem was.

    Because this good and excellent doctor put the patients and symptoms first, he was then hounded by the 'powers that be' because he treated patients. He also sent an invitation to every single Endocrinologist to discuss the 'parlous' state of affairs but not one accepted. So it's to our (the patients) detriment that there are no 'open' minds and doctors threatened if they dare to 'think outside the box'. False Statements are made. I think I shall now end.

    The above link, even though the three yearly reminders were requested. There was absolutely no response. I am sorry to say that the author died accidentally.

    The above a distinguished, sympathetic doctor who died but not before he was brought before the GMC on 7 separate occasions. No wonder he died of a stroke. This is an extract from one of his pages:-

    To return to the bunch of baloney allegation.

    The probability (p) of 8 events (x) in 3 months where the average number of events (z) is 0.25 in 3 months (in this example a complaint is considered an event and an unpleasant one at that) is given by the beautiful Poissonian formula namely

    x z

    p = Z / e X x!, where e is a fairly incomprehensible concept but is the base

    of natural logrithms and the day is saved by using its approximate value of 2.71 which we will bung into the equation and thus

    8 0.25

    p = 0.25 / 2.71 X 8!

    p = < 0.0000000003 or a 1 in 10,000 0000 chance if these were random events.

    Thus we must conclude that the congestion of complaints during the last three months are not random events. I leave you to draw any conclusions from this analysis.

  • Just think how much money the NHS could save if hypothyroid patients were appropriately treated - all those carrier bags of medication for other problems (caused by undertreatment of thyroid problems) wouldn't be needed. Then there's the cost to business and the economy of lost days at work. But overwhelmingly the real issue is the wasted quality of life for the individuals concerned. Cuggyd, you're by no means alone in feeling as you do. A drop in dose of 75mcg is massive, no wonder you feel poorly. Recently trained doctors seem to fail to recognise that everyone has their own set point at which thyroid hormones are at the correct level for them. It's not enough to be in the average range for everyone, you have to have your level right for you. When I was diagnosed many years ago, my GP told me that he knew what to treat my condition with, but only I would be able to decide how much. It's trying to adjust it to the test that causes the problems. Also the differing quality of medications by different manufacturers causes problems, and restrictions on types of medications causes problems for others. There are increased rates of many other conditions such as heart stroke and cancer in undertreated hypothyroid patients and the NHS treats these. How sad it doesn't properly deal with the underlying problem and save all this distress.

  • Hy Cuggyd,

    Several members of my family with thyroid problems have been let down by Medics.

    Medics look to see if the thyroid bloods are 'within range' and if so, tell you, you are OK, you have no problem, yet you are left feeling puzzled because you know you don't feel well at all. I now know that you can have a thyroid problem, even if your thyroid bloods are showing 'within range'

    Far too many patients are being missed out due to Medics relying on unreliable Thyroid bloods, some patients have chronic pains, tiredness, brain fog, weight gain and never get well if they are 'missed' yet it is so easy to treat once realized it is down to a thyroid problem.

    I had Fibromyalgia Pains, Tiredness, Brain fog, gained weight suddenly, had exercise resistance, but it all fell away over night, once I was optimally Medicated, but I had to keep badgering my Doctor to up my medication and asked my Doctor to go by my (painful,) symptoms, not by my thyroid bloods which are unreliable.

    Luckily I found out about 'Thyroid UK' (on Health Unlocked,) and have never looked back. Thyroid Uk members have guided my Family and myself back to a better health, It took me a while to work it all out, learn about Thyroid bloods levels and how Vitamins and minerals help massively.

    I then used my new thyroid knowledge to self treat my Family members on Natural Desiccated Thyroid and T3 , a job Medics should have been sorting out all along.

  • I agree, I've been suffering from symptoms for years that were never picked up by my GP. Finally got diagnosed in nov 2014 and frankly the NHS treatment of this disease is shocking. I was prescribed Levothyroxine which made me feel much much worse and left me bedridden for 2 weeks! I'm now not taking any thyroid medication which can't continue and left with very few options to get myself back on track other than to pay for more enlightened private doctors which I have no money for. After having fantastic treatment for cancer 10yrs ago ive been shocked and disgusted about how poor the treatment of this disease is.

    Hopefully this will change.

  • With change of Levothyroxine four years ago from Goldshield Eltroxin to Mercury Pharma generic Levothyroxine my health went rapidly downhill. Once I realised that it was Mercury Pharma that was causing the problems (my son was suffering as well, but no as bad), I had us both changed to Wockhardt. Unfortunately this was worse by lowering our T3 status. Next came Actavis, which my son is still on. I could take no more than a week of it. Having tried a German make, Aliud (self-funding) I went back on this, but this too is not much better. For 19 years after a sub-total Thyroidectomy for Graves I was left untreated and was in very bad health. I now feel back to this stage with bad skin problems as well. We need better treatment fast. Treatment was much better over 100 years ago. The problem appears to be Big Pharma wanting more money for other meds which are needed when we do not get on with Levothyroxine.

    I have no option but to take this insidious medication as I do not have enough Thyroid Gland to work properly now.

  • Luckier then many as only had a year of hypothyroidism although some of the symptoms were there a year earlier. The medics say they are treating symptoms but they do not as they are in thrall to blood tests that can be very misleading. An endocrinologist I saw said that he had no idea what the cause of my symptoms were and showed no interest finding out.

    This week a different doctor actually gave me an examination and suggested further tests and a scan before risking a change in my meds. The difference? I went private.

    Farage is right that the NHS is usually good in emergencies but not in ordinary care and treatment.

    It is time to stop defending a sacred cow that delivers many unnatural deaths.Todays paper refers to an enquiry in Greater Manchester where 7 babies and 3 mothers died in 8 months in the maternity units. These types of events are regularly recorded. " we have learned lessons " they say but they do not learn.

    I believe it is time to study what other countries do and to look towards some sort of insurance based system. All the politicians know that the present system is increasingly unaffordable but will not admit it so care goes down the pan.

  • At the moment do not think Private Insurance will cover long term illness such as Thyroid problems. Would it in the future and would this then mean we had to pay a high premium?

  • Of course ,that is what National Insurance was supposed to be for but became a handy way of sneakily increasing taxation whilst pretending income tax is unchanged when really NI is just income tax by another name.

    All I know is that the present system is unsustainable ,increasing taxes is not necessarily the answer ,more money does not change the producer culturei.e you get what you are given not what you need.

  • Always thought that NHI was for pensions, but agree it is just income tax by another name, same as road tax does more than mend roads. Would be good if all our taxes were for the good of this country, then we could donate to other countries for aid, as we do anyway. What we are given is not always of use to us though.

  • Having been diagnosed with CFS/ME for the last 20 disastrous years I was diagnosed with under active thyroid April last year. Maybe that is all that is wrong with me and I have wasted the last 20 years looking for treatment? Maybe I will find out soon!

  • Debbie c. (Cuggyd)

    It took the doctors 3 years to diagnose me. I had lost my voice and was sleeping all day by this time. My husband and I went to Crete for a holiday and on a beautiful beach I slept all day.

    Over the years I have had a bad back which I thought was serious and cried in the doctors surgery (I took my husband too). The doctor told me it was wear and tear. Anxiety that wakes me up and then I don't sleep for days. Cure for that Valium and Prozac and sleeping pills. Dry eyes, cream and drops. Bad stomach with gerd that makes me want to be sick and yes more pills for that. My cholestral was 7 last time it was tested but doctor said I was in the right range for my age. Constipation so I take something for that.

    I have had enough of feeling ill so started to research and utube has been great. I watched Scottish Parliament discussing a way forward with some sufferers and realised how huge this problem is. Testing is just not good enough.

    I told my doctor I thought I had Hashimotos. My heart had been palpitating a lot on 175 mg so she thought I was taking too much so she dropped it to 100mg. My next blood test was way out and she said I must be feeling bad. I said I always do.

    After studying I know I need more tests. Privately of course. Will try getting a test for antibodies and I think it's t3 conversion. If I took the dog to the vets I know i would get treatment what is going on here for humans. Is it the doctors or pharmaceutical controlling what we get offered or cost?. Something has got to change. Where can we start to get this sorted.

    If I had more testing and find the problem I could hopefully improve my health enough to have a life. I do not work as I have not got the energy. If anyone checked my medical records they would think I was a hypochondriac. Thankyou so much for listening. Did not know you were all out there.

  • Have you joined Thyroid UK yet Cuggyd ?


  • Hi Cuggyd, yes there are loads of us out there and all in the same boat, constipation, palpitations, not being taken seriously etc etc. here is a link to a support group that has members who are very knowledgeable and will be able to answer any questions you have,

    hope you manage to feel better eventually.

  • Your link didn't come out quite right, flatfeet, assuming you were linking to the Thyroid UK community on HU. :) It should be :

  • Yes I was, thanks HB

  • Most of us have drifted over from Thyroid UK - come and join us ! You can click onto our names and read our edited life stories - ...... :-)

  • I am totally shocked at the extreme lack of care for patients with Hypothyroidism. It seems the GP's mainly feel it nothing to worry about. I wonder if they will change their tune if they get it....oh silly me they will be able to self medicate with any treatment they wish!!

    The TSH level is a joke if it is reliable please can someone tell me how the result changed from 3.2 to 1.19 in two weeks?

    If it was treated sufficiently previous to 1960 then why change it to a system that does not consider the patient.

    Why are the NHS no longer helping people to feel good?

    Why is it easier to get pills for things we don't need like statins, then it is for medication to make a patient with hypothyroidism feel well again.

    Surely this is a Human Right's issue!!

    Why have over 37,000 people signed a petition for the World Health Organisation for better treatment?

  • Why dosnt the NHS fund complete blood test for Hypothyroidism. They only go by TSH results and do not check T4 or T3. You can pay for your own blood test I understand and then your GP will happily interpret those results. I think preventative medicine a full range of tests should be carried out to identify whether your thyroid is working properly. This is a web site which details what the test results mean and what levels they should be:

  • I couldn't take Levothyroxine or Evotrox due to the ingredients including Lactose in the first and citrous acid in the second and having allergy to both and many others. I was prescribed homeopathic thyroidinum and Iodum which helped greatly. However, the CCG have refused to continue to fund my treatment on the NHS. My body was greatly damaged by conventional treatment and drugs in 2000 and I can take no drugs now. Blood tests after showed a severe hormonal imbalance and later hypothyroidism, although my doctor later said my symptoms seemed more like hyperthyroidism. My thyroid is very sensitive and I have to be careful even with the homeopathic treatment, but I have learnt to muscle test myself and find out when I can take it.

    You are right to want to know about natural alternatives as I know those who have become toxic due to being on synthetic for too long. The body wants to heal itself - the conventional system doesn't take account of that from my experience, anyway.

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