I feel like I am on a one woman crusade in Scotland to get Hashimotos recognised for what it is an autoimmune disease, I now have four autoimmune diseases Hashimotos, Pernicious Anaemia, Coeliac disease, Hyperparathyroidism, and am being referred for testing for rheumatoid arthritis. I get treatment from specialist to specialist as I now have heart problems, had a stroke and a brain tumour, and take 27 medications a day some which I know are contraindicated like my statin. All I want is a proper autoimmune diagnostic specialist who will look at me like a whole person and help me actually be on a road to recovery. Most other European countries have this service but we appear to be lacking. On another note I am now on 300mcg. of Thyroxine because the doctors believe the active version of the hormone T3 may cause me more heart issues. Can anyone explain.
Any help or advice would be welcome, by the way I have two endocrinologists one for the thyroid and a totally different one for my parathyroid, a neurologist and a neurosurgeon, a urologist, a cardiologist, an audiologist, an opthamologist and a gastroenterologist. I am also now in a wheelchair. I am sure i must be the most expensive patient on the NHS all because they can’t provide one central autoimmune specialist. I really think I need a “Dr House” ( that last comment is a desperate joke)
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Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
It is possible to be prescribed T3 should you need it. You can email info@thyroiduk.org for a list of T3 friendly Endo's.
What supplements are you taking?
What are your latest results for ferritin, folate, B12 & D3?
For thyrid hormone to work well we need all key vitamins to be at OPTIMAL levels.
I am on B12 By injection every 3 months with daily folate because of the pernicious anaemia, In Scotland once you are diagnosed with pernicious anaemia and on the B12 + folate regime then they only test these once a year. I take 800 unit D3 as prescribed and have not been tested for ferritin. My endocrinologist will not prescribe for T3 on the advice of the cardiologist because I have a Chronic Total Occlusion of the Heart and atypical angina. I have spent the last 5 years having my T4 increased alongside my heart meds, I also have fluctuating high normal to high Calcium readings because of my parathyroid and have osteoporosis due to both that and possibly my coeliac disease, All of these may of course be the reason for much of the cardiac and tumour problems. Does anyone know of any specialist in holistic autoimmune. Is there anyone at Thyroid U.K. who has real knowledge about the Scottish NHS.
Is it an Endocrinologist that you're loking for, in which case members can only make recommendations by private message and the post will be locked. You can always start a new post for general advice.
800iu of vit D is a low dose and not likely to be bringing your level up to OPTIMAL where it needs to be.
Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
There may well be members here who use and know about the Scottish NHS.
If you are looking for someone more holistic then you would likely need to go privately.
I don’t think it is an endocrinologist as I already have 2 of those one for my Hashimotos and another for my Hyperparathyroidism. I am looking for an autoimmune specialist who really understands why the body attacks itself itself in this way. Even on health unlocked everything is divided into each disease so someone like me who suffers from 5 autoimmune diseases ends up on 5 forums because there is not a central forum for multi autoimmune disease.
So you need a Functional doctor if you want a whole person approach. Some nutritionists are also good with multi system conditions but you won't find either on the NHS.
As far as T3 not being suitable for heart conditions thats likely a matter for debate and a matter of opinion as not enough T3 can cause heart issues too.
You will get more responses if you edit the title of your post and make it clearer what you are looking for. Remember that some practitioners also use virtual consultations which might widen your options.
Use the 'More' option at the bottom of your post for a drop down list of options and pick 'edit'.
I don't know which area in Scotland you are in. The Thyroid UK list has a Functional Medicine specialist in Edinburgh. A famous Dutchman who resided in Troon, and was trained with Alfred Vogel, died in 2015. His daughter is listed as running a clinic in the Glasgow area, but it seems more vitamin, mineral and herbal remedies, food intolerance and Bio Resonance orientated. This probably isn't what you are looking for. The famous Dutchman popped into my head when I read your post. People flocked to him from all over Scotland for years. I consulted him about 30 years ago. If it interests you I can PM you if you don't know who I am referring to, and it is of interest to you. It may not be in your area.
I am looking for what I had in both Belgium and Italy a clinical autoimmune specialist who managed all of my autoimmune conditions and ensured that all my medications and vitamins were in balance across my Hashimotos, coeliac disease, Hyperparathyroidism, pernicious anaemia as I was identified as a MAS (multi autoimmune syndrome) patient. This meant that all my referals to endos, cardiac, neuro, urology, oncology, etc were directed through them and all results sent to her and I only had to have one clear point of discussion about whether this was a symptom of autoimmune or not. An example is until I returned to the U.K. 5 years ago my autoimmune specialist would not allow the cardiologist to prescribe a statin as she said my cholesterol issues were caused by my Thyroid. I was also during the 8 years abroad on a mixture of T4 and T3 and many of my thyroid symptoms disappeared. My health is on a downward spiral not having an autoimmune specialist and being passed from symptom to symptoms specialist instead.
I don't think you'll achieve this in the NHS in the UK. Somewhere in the north of Scotland (can't remember where but think it may be Dingwall) the approach you are looking for has been achieved where hypermobility is concerned, and the multitude of problems it creates. This , I believe, is so unusual as to be unique.I doubt vitamins being balanced exists as a concept in the NHS. The only approach I can think of would be to see if "General Medicine" would be prepared to do this for you. I would be surprised , however, if you even managed a referral to General Medicine. Supposedly they are meant to deal with things that are a mystery to every other department, and supposed to have a more universal knowledge of individual specialisms. I doubt this is actually the case. I don't think what you ideally want and need exists in the UK. It would be marvellous if it did.
As Jaydee advised, the nearest you can hope for to what you would ideally like, would be a privately funded Functional Doctor.
No I talked it through with a functional doctor yesterday in Edinburgh and they don’t feel they have the expertise to manage Multiple Autoimmune Syndrome. The only place where it is being treated is a funded project for Children at Great Ormond St. There is research going on funded by FAIR U.K. and British Society of Immunologists are carrying out research in the area of MAS.
I think I have reached the end of my journey, in 6 weeks time I will have a bypass as my Hyperparathyroidism, or my Hashimotos or my Pernicious Anaemia or my coeliac disease or my potential rheumatoid arthritis has caused by cardiac artery to become blocked again and after 4 stents there are no more options. I have brain fog and joint pain, and in a wheelchair which could be any one or all of the auto-immunes, I am fed up with everyone medical person saying I am a complex case, I am not, I am a very typical MAS case.
I am so disappointed that with 4 million people in the U.K. suffering from various autoimmune diseases that there is no place or forum for those of us with MAS ie 3, 4 or 5 of these autoimmune diseases to seek the treatment we really need.
I wish you well for your forthcoming operation. I am surprised that Italy appears to offer such superior medical treatment to the UK, but when I think about it, I shouldn't be. I have been ill since 1987 and the only progress I have made in that time has been privately funded, or as a result of advice given by fellow sufferers. Every specialist in the UK seems totally oblivious of anything other than their own speciality. And all seem to be pretty much incompetent in their own speciality, or have their hands tied so tightly by inadequate and ludicrous guidelines, that it is a waste of time when you are eventually seen. The refusal of NHS blood labs to test what they have been requested to test, means you have fallen at the first hurdle , before an investigation has even started to be carried out.
Is there no possibility of you returning to Italy to live, as your medical needs most certainly won't be met in the UK. I was reading about healthcare in Italy independently of your post, for reasons of my own, funnily enough. You certainly have a lot on your plate. I am sorry you are in the situation you are in. Individually, none of your conditions are dealt with well in the Uk.
No unfortunately Brexit put paid to that as my qualifications were no longer recognised and our FOM and reciprocal health rights were no longer recognised. Italy has both a high incidence of Hashimotos and coeliac disease and tests for both routinely. Thank you for your kind words.
Polyautoimmunity is defined as more than one autoimmune disease and MAS, three or more. Many forum members have multiple autoimmune conditions: Hashi, Graves, PA, RA, Celiac, Sjögren's, etc.
The science says these conditions have particular shared clinical characteristics and phenotypes depending if they are organ specific or systemic, eg the same parts of the immune system because overactive, creating common denominators in the inflammatory cytokines (chemical messengers).
Other issues not autoimmune are often secondary. For example cardiac problems, high cholesterol and poor bone health can result from long term inadequate levels of T3. Taking T4 levels higher will not necessarily force further conversion but become counterproductive as all patients have a T4 ceiling point, after which conversion reduces and impairs further.
As you’ve found out we’re are not treated holistically so conditions tend to worsen and/or multiply. Many forum members have found multiple conditions to improve once the individualised FT4:FT3 ratio is corrected and encouraged to function well through optimisation of essential cofactors, eg iron, B vits, Vit D, selenium & zinc, etc, Also removing common autoimmune triggers such as gluten, diary, grains, high levels of cosmetic chemicals, etc.
This is not an area UK doctors have knowledge in and members often have to pay for own private testing and source supplements, and often even source own thyroid meds also.
I would strongly urge you to read The Root Cause by Isabella Wentz to gain some understanding of autoimmunity and how to best manage it. Private tests can be purchased here …. thyroiduk.org/testing/priva...
I have been reading Isabella work for years. I am not going to allow myself as a MAS patient to have all of my treatment pinned to 1 autoimmune disease, particularly when that treatment is based on symptoms and hormone testing and not testing at the cellular level or at the immune response level. I am going to campaign with FAIR U.K. and with the British Society of Immunologists to have MAS or Polyautoimmune recognised and treated properly in the U.K. It may be too late for me but I must be able to stop the suffering that so many other autoimmune sufferers do through.
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