Isn't it strange when you go through all the posts

Posted , 9 users are following.

Isn't it strange when you go back through all the past posts on this forum the difference probably 10. To 1 of women to men who have been " diagnosed" with ME/CFS ? Isn't it strange that it is the same for thyroid disease 10 women to 1 man suffering some form of thyroid problem ? There are studies going on  about the link between ME/ CFS and thyroid illness the symptoms for the two are very similar . Some forward thinking doctors have been treating ME/ CFS patients with thyroxine , T4 with amazing results . These patients have had all thyroid blood tests come back from the lab NORMAL many times after repeated tests . Doctor skinner is one brave man who went against the blood tests and treat patients sent to him from other practitioners , thought to be suffering from ME or CFS , with thyroid hormones , either T4 or T4+ T3 or NDT . Dr skinner was called in front of the medical board many times for mal practice ( going against blood tests) but hundreds of his patients stood up for him and told how they were desperately ill until dr skinner prescribed thyroid meds , and we're now back to full health.he was given permission to go on treating patents this way although only if they were referred by another GP . Sadly dr skinner has since passed away. I think  this gives room for thought why be content to have a " diagnosis" of an illness there are no specific tests for ? How do we know every other tests have been looked into? Most GP s and endocrinologists will not go past the bloods whereas for many many years before blood tests were used and before the synthetic hormone was ' invented' doctors prescribed natural desiccated thyroid to patients with symptoms of hypothyroidism and if they were cured of the symptoms they stayed on it for life , if not then they were tested for other illnesses. There are too many people suffering the most dibillitating illness because blood tests rule, things must change !!! I appreciate giving a med that blood tests say is not needed has to come into the equation but  all the info and research tells us a low dose of thyroid hormone will not harm anyone and is low cost not a drain on the NHS ! 

0 likes, 23 replies

23 Replies

Next
  • Posted

    Hi.

    certainly more.women than men that could suggest thyroid or hormones.

    or maybe women more sensitive to stress Or candida.

    hard to narrow it down.

    greg

  • Posted

    the whole t3+ t4 thing is very interesting , why dont doc lets patients at least experiment with it?
    • Posted

      Andrew I believe you are taking T4 (thyroxine in UK) ?? Getting a GP  to prescribe T3is nigh impossible   And getting an endocrinologist to prescribe T3 ( thyrononine) goes against every thing they believe in!! If you have an endo who will think outside the box and give you a trial of T4+ T3 perhaps lowering your T4 consider yourself very lucky. Having said that he/ she will most probably give you the lowest dose available which is 10 mg s ( to be taken once a day) absolutely useless you will have no change in your symptoms . 70 mg s a week I ask you!!!! If you go on to the thyroid forums rather than ME/CFS ( health unlocked thyroid is very informative ) you will see many people have been lucky enough to eventually be prescribed T3 +T4  or even T3 only or NDT , with amazing results! It is hard to understand why synthetic T4 is the only hormone replacement doctors will prescribe . Many sufferers end up self medicating  which isn't recommended mostly because after being treated with T3 or NDT they move home and when they change to a new surgery the GP s do not agree with their medication so only prescribe T4 so the patient becomes very ill again . What would you do ? There is a lot of controversy over the misdiagnosis of thyroid disease and the high range blood tests if you are below or even border line you will not be treated and eventually " diagnosed" with ME/ CFS !!! Sy 

       

  • Posted

    A blood test showed that I was just under the norm for hypothyroidism but won't give me a thing until after a third blood test is done in July.  I have suffered with CFS symptoms for about 6 years now although not according to doctors!  All tests have been completely negative until now.
    • Posted

      As I said symptoms for CFS and thyroid disease are much the same , some patients will have a few and others will have all , when you go to your GP with these symptoms. The first blood test is usually thyroid under active . They come back normal or border line ( according to the range in your country) so it is discounted , you still have symptoms so see your GP who will do another blood test , come back normal. Discounted ! He /she will usually do tests for illnesses with similar symptoms they all come back normal. You feel so ill you still have these awful things going on in your body don't know where to turn see GP again , this is probably when he/she loses it !!! Diagnosis - it is all in your head there is nothing wrong tests prove it you are just depressed!!! Antidepressants are prescribed but you don't really feel depressed , I you feel depression isn't the cause but you feel so low because of symptoms you may take them . Do they make you feel well again  ?? NO!! After a few more visits to GP you probably are passed on to an endocrinologist ( specialist) he will repeat bloods do one or two bits and pieces feel your neck do reflex tests have you walk in a straight line . Blood tests come back normal , thyroid problems are discounted. A while later you still have symptoms you feel no better GP makes an appt with tropical disease specialist do a few more tests all come back normal " diagnosis" ME/CFS !!!! You are quite happy to at last have a proper diagnosis , so you struggle on year after year with little hope of ever feeling really well again. Is this good enough when there are doctors out there ( few on the ground) who will be willing to give a trial of thyroid replacement hormone going against your blood tests , and those patients symptoms disappear or at the very least make life more bearable ..  Why do most doctors stick rigidly to blood test results when people have all the symptoms of a thyroid illness????? Is the range set too high other countries have a much lower range if you are a patient in Germany for instance , you will be given thyroxine ( T4)  if you are under their range which is set much lower. Hopefully things will change in the not too distant future . Sy
    • Posted

      I must just add if you have already been diagnosed with  hypothyroidism and being prescribed T4 ( thyroxine) and you are still suffering from symptoms you may need a different hormone replacement . Possibly T4+ T3 or T3 only or natural desiccated thyroid only ! You may be , as dr Lowe has researched and proved, one of the patients who is hormone resistant which needs higher dose! You can read for yourself if you go to his site. 
    • Posted

      Kath my thyroid blood tests came back normal repeatedly for years ! It took a long time for me to find a doctor who thought outside the box. He wen by symptoms not bloods . Hashimotos disease masks blood tests in many cases. Maybe a possibility for you . By the time I was treated with T4 a thyroid ultrasound showed very shrunken and inflamed pointing to autoimmune thyroiditis peroxidase and thyroglobulin blood tests confirmed diagnosis!! There is no cure for the autoimmune disease but there is treatment for the symptoms and given the correct hormones and dose ( which can be trial and error ) you will be well again . Hope this helps you be a bit pushy with your GP some I have experienced are rude and indifferent and send you out of the door with a flea in your ear!!!
  • Posted

    Sylvia that is really interesting reading. I have had many symptoms in line with CFS and it was assumed I was depressed as I had had a major bereavement. Three years later all tests NAD and not depressed!!!!!!

    What a great doctor!

    • Posted

      Sorry to hear of your sad bereavement and of course you will have been ,if not depressed , certainly very down . You say you have many symptoms of CFS and probably GP put the two together and diagnosis , depression! Depression is like a 'get out of jail card 'for GP s . I take it you were tested at the time for thyroid as fatigue is the main symptom of thyroid and CFS?? Came back normal??? If you feel thyroid could be a possibility after reading my text my advice is approach your GP and tell him/ her you are not happy with diagnosis and would like tests for autoantibodies ( hashimoto) or a trial of thyroxine , this will depend solely on your GP being open to your findings which you knew nothing about. If you go on the internet to either dr skinner or dr Lowe you will find a lot of info about the misdiagnosis of Thyroid disease  and how both doctors  treated and cured many hundreds of patients " diagnosed" with ME/CFS best of luck for a happy ending sy 
  • Posted

    Interesting reading to add to sylvia thoughts on hormones etc.

    Could the one in the 10:1 ratio possibly be gender variance, or gender nonconformity men?  Perhaps carrying a common gene or have, something in their chemical makeup that is more in common with the Female suffers.

    As the ratio stated is showing quite a variance between the two sexes not 50/50 as you would expect (the flu virus or similar affects the population more equally).

    The Transgender site GIRES dot org have quite a few reports on the number of people seeking help with transgender. One such report states people living with transgender to some degree in the UK may number 300,000 a prevalence of 600 per 100,000 of whom 80% were assigned boys at birth. I think there is possibly more to this than just numbers.

    Please note

    Transsexualism/ Gender Dysphoria is not a lifestyle choice people make, just like ME/CFS is not a choice we make, so please don’t discriminate against this part of our diverse population.

     

    • Posted

      you could have a point here, however i am a male and am male in view and do not as far as i am aware have any transgender issues. I think that while there may be a point here it may well be down to environment issues to. Women are stressed in what is becoming a male stressful rleated society, the desire to succeed and push for success at all costs the femal body isnt not designed for those stresses and physiological stres accordingly may be having a higher impact. The males on here are, from what i have read, all competitive all determined ot achieve more and push themselves to the physical limit. I know when i was training i did and at work too - years ago i got up wit hthe dawn and whent to bed at dusk getting up again ot make dinner and anhour later back to sleep. (landscape gardener) as well as training hard for athletics 100m to 400mHurdles) Imoved into working for other people and again pushed myself with ambition... and also with passion i worked to help others...Like all things there is more than one view to take and that is what makes it hard to deal with. also each person has a different breaking point. what is tough for one person is virtually impossible for someone else. I think this is about immune breaking points and peoples ability to either push themselves too hard (eg athletes) being too ambitious for the bodies (or both nervous systems) capability or the hormonal physiological aspects of body control via the hormone system. Yes it is interesting there is a male female split but its not just a gender issue i dont think      
    • Posted

      I am sorry if I offended you I am not discriminating against any sex I was just stating a fact that women are predominately the ones who suffer with thyroid illness And  as it seems to be the same for ME/CFS is their a connection ? Are the two not separate illnesses but one misdiagnosed? 
    • Posted

      hmmm yes it is a thought but there is increasing evidence that ME/CFS appears to be a nerve infection of the sympathetic nervous system and or Mitochondial infection or infection of the nerves via their mitochondria. Thyroid issues seem mostly to come from endocyne infections  similar problems and similar support (B12 et al) the inflamation reactions of both illnesses has similar side effects - heart issues water retention etc it is interesting that two different illnesses can be so similar in appearance. this is a good debate though and has been very interesting!!! (and i hope continues to be) thank you for being this supportive for all of us!!! 
  • Posted

    I am going to plunge for low estrogen. Lot of people Hit the thyroid button but i think excess stress.hormone cortisol is wrecking havoc and leaving a very unbalanced hormonal system.

    some evidence pointing to low prevalance cfs and remssion rates during pregnancy with high estrogen levels.

    additionally estrogen is a dilator of blood vessels and many symptoms of cfs Mimic poor circulation...cold.extremities....slow metabolism...lower blood pressure....POTS.

    i think estrogen very overlooked.in cfs.notice also.high prevalance groups are 15-19 and 30-39 with near extinction at 60+.

    Hormonal age groups.

    estrogen seriously overlooked in males as lower the better equates.to lower prostrate cancer....but may be influential in cfs...

    • Posted

      Hi Gregh, I personally think you might be on the right track somewhat, it would not be the first place the Doctors would consider I guess, and as such it could be part of the overall picture of ME. I imagine it could be down to lots of factors like various hormone levels all contributing to the illness, making it very difficult to put a finger on its exact cause and ultimately the fix. It’s only by eliminating the more common triggers for similar illnesses like thyroid issues can they begin to look at the remaining possible triggers that is common in all people of both sexes.

       

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.