I have now officially been diagnosed with the above condition.
Type B and C
https://rarediseases.info.nih.gov/diseases/1098... - Thyroid UK
https://rarediseases.info.nih.gov/diseases/10980/autoimmune-polyglandular-syndrome-type-3
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I am so sorry Shaws. Having read your profile I am shocked at what you have been through and obviously continue to.
I assume there is some, albeit little, consolation in knowing you were right as I expect you have tried for a very long time to have the medical profession acknowledge your suffering as real.
Sincerely I wish that you are treated properly and stay as well as possible now. x.
Thank you for your kind words Yeswithasmile.
As long as I get an optimum dose of what I require for hypo I should feel well unless there's a change in the excipients.
For B12 deficiency (pernicious anaemia) I have now been getting monthly jabs (bought by myself) although I believe the surgery will do so) from now on.
P.A. was diagnosed before I had hypo.
Vitiligo is on my upper back but I don't think there's anything I can do yet.
With alopecia hair falls out around spring - and for summer you really don't want to lose har and wear a wig.
It is difficult as when it first began I saw a doctor who put injections in scalp.
Husband was with me and said when on our way home I was never to have them again.(I think he felt them more than I did. The injections did work and hair grew back but only for about 10 months and then hair began to fall again. It falls out around Springtime- just in time for the summer and slowly, slowly grows back but obviously not to what was 'normal'.
I don't worry as one of my friends who had been complaining for sometime eventually saw a specialist who gave her a diagnosis. Within ten weeks she was diagnosed, married and buried. So I cannot complain.
Shaws you do so much on here & I’m sad it’s taken such a struggle to get to where you need to be... The fact that you share your story & help others is a fabulous testimony as to how kind you are!
Please look after yourself & know we’re all behind you wishing you well Jo x
That's kind of you.
Why I posted is I doubt any doctors know about these autoimmune conditions and at the very least they should be a 'bit' knowledgeable.
Especially when my doctor phoned (after a blood test) to tell me that my TSH was too low' T3 was 'too high' and T4 'too low'.
I said "that's correct doctor because I don't take levothyroxine (T4) I take liothyronine, (T3) so T3 will be high and T4 low. He then told me but T3 converts to t4! I'm sorry doctor but that isn't correct T4 convert to T3.
Worrying there’s such lack of knowledge still!
The worst for me is when my mother died as it was due to her GP telling her that she no longer needed any B12 injections. My sister and I thought that was 'good'. Unfortunately Mum had pernicious anaemia and I believe died through developing stomach cancer due, I believe due to her injections being stopped.
I’ve had a phone medication review the other week & that was with a surgery pharmacist apparently! Naturally, they want me to go in for bloods, weight, & BP > meaning the levels won’t suit them & I’ll have a flight on! I see the thyroid guy in Aug as phone consult in Feb, supposed appt f2f Aug 🙄 This so called Pharmacist also wants me to revisit the B12 Gastro guy to see if he’ll increase jabs to 10 or hopefully 8 wk intervals instead of 12! It’s always such a drama & that stress no one needs!
I’m so sorry to hear about your Mum it’s unforgivable that GPS just don’t seem to be to the right standards & there doesn’t seem to be the same catch up days teachers get to skill up on things! Otherwise they’d of treated your Mum accordingly & caught anything earlier... Sending you huge hugs, as had I not found here & got a private blood test I’d of still been ill... I know your Mum would be proud of the help you are on here x Thank You
Buddy195Administrator
What treatment have you been offered Shaws? Is your endocrinologist supportive?Wishing you well. Please keep posting to let us know how you are getting on.
So sorry to hear this Shaws. I really value your posts. Do hope you can find some treatment that works for you. Thinking of you.
So sorry to hear this. I hope this means that you can get some help in resolving the adverse health effects. Despite being told by two different rheumatology departments in recent years that I don’t have connective tissue disorder (I’ve been asking about Sjogrens since c2013) And after two ‘rejections’ from eye clinic, despite rapidly changing eye problems/prescriptions, I was told two months ago by a different eye clinic that they were definitely seeing connective tissue disorder in my eyes. They can’t tell me which but say can help. Hence a bucket load of different drops and gels. I was ‘relieved’ to hear that I have not been imagining it. It was the same being diagnosed with hypo after 10years of being told I didn’t have it. Stupid isn’t it, but the feeling of being vindicated! We should not have to feel like this. We should not be ‘happy’ to be diagnosed. But we are because it means we might get the treatment we knew we needed. I hope your diagnose is the start of the help to solve at least some of your health problems. Wishing you well shaws
The fact that doctors knew all clinical symptoms long before blood tests became available. Nowadays they know none at all, so patients remain undiagnosed or given anti-depressants or pain relief etc to keep us quiet.
Your doctor should have been aware about Sjogrens - my daughter has sjogrens too. She is more unwell than I am due to the doctor ticking me off - in no uncertain terms - when she was about 5 or 6 and complaining of pains in body and legs/arms etc.
I know for a fact that few doctors these 'modern' days, know anything like our older doctors did and from 1892 we were given NDT - no blood tests but going by clinical symptoms alone.
I had to diagnose myself when TSH was 100 by then.
It's a pity that those who decide nowadays what hypothyroid people need have now removed NDT, and T3 (due to cost). Their skills and knowledge have been replaced by a blood test result. We do not want people like that to decide what WE, the patient wants prescribed. We should be permitted to trial options.
I was very fortunate to consult with Dr Skinner (RIP)and Dr Peatfield (RIP- two of the 'old school) but knowledgeable school and didn't go by blood tests alone but by symptoms.
The fact that they were treated as criminals by the Associations towards the end of their careers was incredibly stressful for them.
NDT was the very first available replacement that saved lives but the Professions ignore that altogether and although many people can improve on levothyroxine, they wont be on this forum looking for help.
The fact that the BTA withdrew NDT and then T3 limited people's choices unless they have the werewithall to pay privately. That's not how the NHS was supposed to work and should not prevent prescriptions that would enable patients to recover their health.
They should be ashamed and mortified.
Yes shaws I know the history and agree. I’m a T3 mono user, and amazingly enough still getting it on NHS. I can’t consider moving because another surgery won’t issue, but consider myself lucky to be still getting the T3 even though I need it! I suspect my problems will arise when the the current lead GP retires. I think there was something recently about GP not doing the years of medical training but doing apprenticeships. Worrying. Had apprenticeships been introduced when Dr’s were being being trained better it might not have been so bad, but now... I had a Gp at the surgery tell me she didn’t know what T3 was. Another time, she didn’t know how to interpret bloods so no point in getting them! I told her to get them, I’d interpret them myself!
We are now dealing with thoughtless tick box Dr’ing, that means basically anyone can do it, whilst abiding by the ‘rules’ of CCGs and NICE. Gawd help us!
IMO the NHS no longer exists. It is nothing now but three letters. The Gov have used C19 for the last 12months + to promote an NHS they have effective already destroyed from within, over years.
They don’t want to investigate and diagnose anything because they can’t afford to treat so they cover the backsides by denying it exists. With all the wasted money thrown at C19 that is not going to improve.
I noticed that my referral to the Lupus clinic said ‘To rule out connective tissue disorder . Not to investigate it? They also had Fibromyalgia with a question mark next to it. The 1st telephone call I had from the specialist asked ‘was I not happy with my diagnosis of fibromyalgia? What diagnosis....? Following one lot of bloods, delayed 6 months thanks to Covid and GP incompetence I am told, 'following extensive screening...nothing found’. To then be told by eye clinic they are definitely seeing CT disorder. I have been told for decades that the ‘staining pattern’ seen in my eyes is the scarring from eye ulcers. Apparently it is not.
Training has been an issue for some time now, sadly I doubt it will now ever improve. And yes clinical observations, they used to be key for Drs spotting many a condition early. Long gone. What a world we now live in. So sad for our younger generations. What will their lives be like?
Re Fibromyalgia - one of TUK's advisers (now deceased through an accident) was an expert in Fibromyalgia and I'll give you a link. He was also an expert in the use of T3 (liothyronine) as he himself took it in the middle of the night when he awoke so that nothing at all interfered with its uptake.
healthunlocked.com/thyroidu...
Dr Lowe stated it was due to 'resistance' that could cause fibromyalgia. which could be resolved by T3 alone.
Thank you for the link. I have not looked at Dr Lowe for some time, and should refresh.
I don’t think I have fibromyalgia, I used to think I had, when I was on T4, for 20 years, and had many problems. When I stopped T4 the fibromyalgia symptoms along with the migraine and most of the CF went, within days. Funny, the Drs would not consider Fibro back then, only now, when it is a more acceptable diagnosis for them than Connective tissue.
T3 was my life saver. TG I saw Dr P when I did (2010) and at the time had a GP who was willing to support me in seeing him, knowing that all other avenues, including seeing an Endo had failed to make me well. I saw Dr P again in 2017, with my son, who was also struggling, with adrenals. I am so glad I did. He helped us both so much.
I was referred back to an Endo last year, following my bloods going haywire, due imo tp a ‘flare’ of something else. He was fine the 1st phone call, back in March 19. Agreed to do quite a bit of testing. Then is Sept, my next call, he stating that he didn’t know how secure my diagnosis was, as he had only just come into the picture and suggested that I could try stopping my T3 see how I got on!!!!! This without even seeing me!
I think the difference in attitude being that he probably had my file by then and saw that I had seen his colleague, privately between 2007-10 (private at GP request -in the days where they wanted you to go private if poss not NHS!) I’d effectively sacked this Endo when he stopped seeing me and only the blood tests, and sent me to see a psychiatrist/psychologist... who actually backed me up, TG. I’d lost my faith in the Endo. That was when I booked to see Dr P.
Just the other day I alerted another charity to the negative rubbish, designed to undermine, written up on Dr P, on Wikipedia, hopefully they will get it sorted. This was not the first time. Makes me wonder why someone feels the need to keep trying to vilify him? And who? I must check out what is being written on others like Lowes and Skinner!
Dr Peatfield and Dr Skinner were two of the 'properly trained and knowledgeable' doctors about symptoms and anything to do with a dysfunctional thyroid gland.
They were villified I assume by medical persons as it certainly wouldn't be their happy patients would do so.
All of their patients were horrified with what these two doctors went through by their Associations' and then Dr P withdrew his licence so that he could still advise rather than prescribe.
Dr S wouldn't give up as he knew they were wrong.
Since his untimely death his staff have worked upon all their research over the years and were hoping to publish it when they had sufficient funds. They stated that 'It will shake up the Professionals'.
Some people seem to get a 'kind of pleasure' when they see good people attacked (or if they do the attack themselves). They like to see th in their words in print.
Yes agree, I saw Dr P myself twice, in 2010 and again in 2017, when I took my son, and needed to be ‘redirected’ myself again, following a boat load of family stress that left me floored and unable to even think for myself. And talking of those getting pleasure out of attacking others, indeed...having been on the receiving end of that hence the ‘flooring’ ...psychopathic siblings! Can relate. I think these Drs that attacked Dr Skinner and Dr P and those continuing to attack Dr Myhill, must have something to hide themselves. Makes me wonder who they are indebted to, to always be looking to put others down? I have become very cynical in my old age!
I hope Dr Skinner’s work does shake up the profession but I suspect it will be quashed like most things.
Sometimes, I think that many GPs are not sufficiently knowledgeable - even about common conditions.
If we're symptomatic we should be diagnosed quickly not wait for years and being given different prescriptions - maybe not suitable for our condition.
The fact that your eyes have been threatened, that's an awful thing to deal with and hopefully you'll be treated properly. UrsaP
Thank you shaws I'm now thinking that the real problem is lack of education, the training is just direly lacking, or non existent. Even in the specialist areas. Quite often the ‘specialists’ are not actually specialists in the areas they are practising in. I found out the other day the lead at the Lupus Centre of Excellence that I went to, is not actually a Lupus specialist. She is more focused on arthritis. Maybe why she was so dismissive when the ‘specific’ blood test is elusive, she hasn’t got the knowledge and expertise to diagnose on symptoms. The woman there before was a specialist. Sadly retired. It would also seem that is another problem, when these actual knowledgeable people retire there is no one trained to take their place. Got to question why? As we know actual Thyroid and HypoT specialism in particular does not exist, certainly not in the group who seem to be dictating protocols. Kristien Boleart is a RAI ‘treatment’ specialist. She is not a thyroid condition specialist. So yes she might know more about HypEr but clearly had little if any knowledge, that was evident, on HypoT. I asked her about Hypo- Graves, she looked at me as if I had two heads. Sadly she got dragged away before I could find out just what her thoughts were. She also huffed at the idea of thyroid resistance. The only evidence for anything she could provide seemed to be the no of T4 prescriptions from 2014. Got to ask just why there is a lack of the specialists in the ‘difficult to diagnose’ areas, like thyroid and other AI? Not fashionable? Too difficult, hence too difficult to make a name? Too controversial? Too easy to dismiss all these conditions as psychosomatic and offer AntiDs? So if don’t acknowledge these conditions, don’t have to investigate - save money -don’t have to treat - save money - give antiDs (without investigating need - cos that seems to be acceptable) keep these patients (mainly women) doused up with these life suppressants, so they have the capacity to question. Sorry...didn’t mean to rant. But it makes me so cross...especially as Handcock has a consultation out on Women’s health, stating how poorly we have been treated over the course of history as our needs have and are being dictated by the male population. And saying he is going to address this...right! More Lip service!If you have seen/do the consultation you will see the questions and see where he is heading with it, it is not about the likes of hypoT etc.
I wish you well. I hope now you get the correct treatments for you and hopefully the more we are eventually proved right the less they can deny us going forward. WE are the best evidence of what is going wrong with our bodies and the effects we experience.
Symptoms have to start counting. Time for Dr to start listening.
Dr Barry Peatfield's book is still available and it is informative.
He began to be pursued by the authorities doing what he was trained to do and not following their guidelines which he thought was wrong. So he resigned his licence so that he could still advise us on how to recover our health. I was very fortunate to consult both of these wonderful, knowledgeable doctors.
thyroiduk.org/product/your-...
He was another doctor, like Dr Skinner, pursued by the authorities because they wouldn't 'toe the line' to the modern way of diagnosing. Dr P and Dr Skinner also saved many lives.
Dr Skinner's staff - who loved him dearly and were devasted when he died. They said that it was a very happy working environment and have collated all of their scientific evidence and they were hoping to publish it but needed sufficient funds to do so. I hope they were able to or found someone who could.
Doesn't it sound that there's some battle going on - the 'guidelines versus common sense'.
Dr Peatfield’s book was the first one I read that made sense of all my life experience. It was like reading my life story. I followed what happened to Dr P and Dr Skinner. I remember Dr Skinner passing away suddenly. It is so sad that there seems to be no one who can replace these wonderful people.
Considering, too, that they could diagnose us due to our clinical symptoms alone. Also they would prescribe T3 or NDT if patient wasn't improving.
dailyrecord.co.uk/news/real...
That is the problem - clinical observations have been eradicated, so clinical symptoms have been undermined and practically dismissed.
I know of Lorraine’s story. It is harrowing. I met her at the Scottish Women’s Conference a couple of years ago. She told her story there too. So much of her survival was chance. Quite scary!
I think it is about pushing certain conditions off the medical books - so they don’t have to treat them with anything but Cognitive therapies and antiDs! If at all. Population control.
Shaws I'm so sorry to hear about your diagnosis. May you be blessed with Strength and Positive vibes for a great outcome. Thank you for being a Great and Valuable contributer to our forum. Please take good care and be kind to yourself.
Thankfully I am not suffering with any symptoms and am now able to widen my knowledge.
My mother died with stomach cancer due to her GP withdrawing her B12 injections. Little did my sister and I know what 'hell' was ahead and the pleading towards the end for pain relief for her. It was a nightmare.
I am sure many doctors should have chosen another career as 'care and sympathy' seem to have evaporated.
It has taken me months to be diagnosed as GP refused to refer me to a specialist. It was my daughter who found the information online.
Sorry to hear about this Shaws . Hopefully now you know this the right steps can be made for your treatment . Take care
Thanks and I hope you are feeling well and now have no problems with your health.
Can't say " like " - so I'll just say " sorry ' ;
I have also been diagnosed with this in 2019 by the Haematologist, who said I Autoimmune Polyglandular Syndrome Type 3. I had never heard of it before
Holy Toledo. Just looked it up and it would seem to describe what I have, as well.
I am glad you've been diagnosed as I doubt many doctors are aware of such conditions.
Neither had I until daughter read about it. There is also a Type 1, Type 2 and Type 3.
I hope you get treated properly.
I have only just received an alert for this and so I didn’t see your initial reply.
I am pleased that you are well and hope you continue to be so. I am obviously sad and angry that you, me and so many others (incl those above ⬆️) have to be our own physician or at least try to be. Hopefully with things like this forum and people such as yourself sharing your experiences and knowledge not to mention the support, we can all hope to feel a bit better and manage our conditions for a better QoL.
Thank you for your reply Shaws. I, like the others wish you the very best x
Thanks and I hope you do as well. I have relatives in my family who will be Type 1 as they have Hashimoto's and Type 1 Diabetes. The Haematologist that I saw that told me I had it was from Holland. The second Haematologist I spoke to last year had never heard of it. It seems to be pot luck as to who you see. I like everyone else think that there needs to be more training and knowledge. Even my GP surgery that adds to your medical notes that I can see on Patient Access say they don't have an option for it in their coding. They had just put that I had Polyglandular syndrome. I complained and have had it put on my medical records now and they sent me confirmation in writing. I also have it in writing from the last Haematologist. I have also made them put on my medical records that I have Pernicious Anaemia instead of B12 deficiency and had that sent to me in writing too. They tried to say again they didn't have a code for that to put on my records. I told them it isn't very helpful when I am in A and E and my correct conditions aren't listed properly.
I will check this out with surgery as only one doctor seems to be aware of this autoimmune condition. Mind you, I doubt the other GPs know much about hypothyroidism as two have already proven that to me.
They might also think that, if they know we're on a forum, we then assume we have the condition.
We know that isn't true. If I had to wait until my TSH was 100 - it makes you wonder what training they've ever undergone about dysfunctional thyroid glands whereas all of our GPs before the introduction of the blood tests knew all symptoms and patients were given a trial of NDTs.
My mother's doctor told her she no longer needed B12 injections as her bloods were 'fine'. Both myself and sister thought that was 'great'. Unfortunately my mother developed stomach cancer and I believe it happened due to withdrawal of B12 injections.
I would have thought that all GPs knew the consequences about 'too low a B12' if they had P.A.
nhs.uk/conditions/vitamin-b...
I know and I can't believe that they don't know anything. I will let you know when I have been to see the Endocrinologist for the very first time. I agree that years ago they did know more about treatment of Thyroid. It's awful what has happened to your Mum and no one ever seems to be held accountable. In Scotland they automatically test people for Pernicious anemia if they have been diagnosed with autoimmune Thyroid. I don't understand why the Endocrinologists don't share their cases and learn from us and each other. I knew more than my GP last week and I don't care now that I do as it's my health conditions and I am not being treated as a test result number on their screen anymore, as someone on here posted
shawsAdministrator
My mother lived in Scotland and it was her GP who told her she no longer needed B12 injections.
Maybe the GP was becoming unwell and so made a wrong dianosis.
We have to be alert nowadays and thankfully we have the internet to search for information that might be helpful.
Rocky
I’m so sorry to hear this. You are a very valid member and give wonderful advice & have been through so much. Please take care 😔
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