I found this study by Professor Jayne Franklyn of Birmingham University (also current president of BTA) which sets out why hypers who are treated and become hypo still suffer from ectopic beats/tachycardia/AF/palpitations.
I am utterly sick to the back teeth of being told it's menopause, anxiety, nothing. I am not under or over medicated. I still have Graves, an auto immune condition even though my thyroid was removed. So, instead of one condition, I now have three - Graves, hypothyroid and hypoparathyroid. What a success story.
I think more attention needs to be paid to this. Many of us are dismissed as anxious when this is clearly not the case. My cardiologist said he was sure it was endocrine related and it seems he was right. The problem is, endos seem to have no answers. What on earth do they get paid for?
This was one of Dr Lowe's comments and he was referring to the USA re financial inducements. In the UK it is the cost factor:-
December 18, 2003
Dr. Lowe: If by "thyroid specialist," you’re referring to an endocrinologist, then no, I don’t know of one in your area I would refer you to. Over the years, I’ve spoken with many endocrinologists in Canada, France, and all across the United States. Based on those communications, I know of only of a few I could in good conscience refer you to. Unfortunately, none of those few are in your geographic area.
If you insist on being treated by an endocrinologist, I wish you luck; you’ll need it. I believe that a few—precious few—are cordial human beings and excellent clinicians who work collaboratively with their patients. In my experience, however, most are arrogant, rude, and dictatorial. Worse, I’m convinced that most are thoroughly ignorant of how to help hypothyroid patients overcome their symptoms and recover their health. You may eventually find one who’ll interact well with you and treat you properly. But to find that one, you may have to sort through many who’ll sustain your symptoms and insult you in the process.
The problem is that, for all practical purposes, the modern endocrinology specialty is a marketing wing of various corporations that lavish it with financial inducements. The inducements buy the specialty’s loyalty. As a result, what you as a patient can get from most members of the specialty is strictly what the corporations market and profit from—even if this leaves you ill and debilitated.
Thanks Shaws,, I was looking for that page! Although I totally agree with you (and Dr Lowe) my situation is a bit different in that I only really see my endo for tests GP and Dr S can't organise. He's ok and uses T3 though I am happy with Erfa. The problem is, endos don't seem to know much about the immune side of things. I have seen a brilliant cardiologist who insists this is endo related but, short of a synacthen test, he seems not to accept this is related. The paper says otherwise. The specialities in medicine don't 'talk' to each other, and as thyroid affects the whole body, to treat it properly, they really do need to talk.
Thyroid wise, I am good but, on levo and Erfa, I swing between euthyroid and hyper a few times a day and the paper I linked to makes me think the immune aspect of being hyper is not magiced away by having thyroid removed.
I too have graves, and post sub total thyroidectomy. I was always made to believe that my graves was 'cured' by the British medical profession. Even though I have always had symptoms of graves, especially when I am stressed. Over the last 4/5 years I have done a lot of personal research, and I know for a fact that my graves is not cured, and I do in fact still make antibodies, even though not to the same extent as prior to my surgery. My drs have tried to keep me in a 'medically induced' hypothyroid state for the last 18 years, leaving me really quite unwell. I have fought back over the last few years, and my hospital trust has had a number of formal complaints about the way an endocrinologist has treated me. They are learning, very slowly, that I won't accept this sub-standard care any longer, and the have at long last prescribed me T3. But I tell you it was one hell of a battle, and they are still trying to keep me hypothyroid! They think I will sue them if I go into a thyrotoxic state - no, I will sue them them if they keep making me / keeping me hypothyroid! The British medical profession are rubbish at treating thyroid disease, and we need to stand up them to get well.
Hi She is well know, especially by cardiologists as being brilliant. Unfortunately, not too far from retirement. She told a friend that AF precipitates AF if the inclination is there ie it would have eventually happened any way.
Jackie
Hi
Thank you for posting this.
I agree with you - I have never seen articles on immune side of problems in Graves.
Hyper / autoimmune does run in my family.
I'm slightly confused that you had complete thyroidectomy and you say you still have raised Grave's autommune (Grave's) antibody. Where do you think this autoantibody is produced in your body?
I'm another will comeback and post later as off out. I am 5.5 years post removal you lot got eye issues still too? Will look forward to reading what you found x
I started off seeing a consultant for irregular heartbeats. He told me it was anxiety which completely shocked me. The heart rate started to increase until eventually I started having 5-10 panic attacks a day. The GP offered SSRI's which I refused because I felt generally something else was wrong. I waited 3 years to see an NHS counsellor who told me that it was depression and that my needing the toilet all the time was all in my head. So I became depressed, stopped going to see the GP, stopped going out. Lost weight, eyes standing out of head, starting acting like a women posessed, starting shaking so much I couldn't hold a cup in my hand, begged my family to take me to a mental hospital. Until a friend came to visit and said how long have had Graves my sister has it! That summarises 2000-2010. My friend took me to the GP next day and told the GP to test for Graves. Months later I had my thyroid removed. I too was told it was the cure and I was so ill I totally accepted everything the consultant said. My anxiety levels were so high I did not want to Google or explore any further.
My my few fibs me thinks as there is no cure for Graves. It's a cure for hyperthyroid and exchanges it for hypothyroid whilst leaving you still with the Graves and the ever lasting possiblity of more autoimmune treats. They don't tell you that do they? Or the perhaps life style changes could push the Graves into remission, not that I think I could have been one of those types.
Since 2010 when my friend diagnosed me, in my black humour, I would say my diagnosis from everyone was 'you've been very unlucky'. That's the most accurate they've been.
2 years on from my operation and my eyes are every bit as active as they were before my operation. My eye consultant will not speak to my endo and vice versa leading to them giving contra meds/treatments. The eye consultant wants TSH surpressed as much as possible and the endo is trying to cut my meds to bring my TSH back into range and can I just add at the point DOES ANYONE CARE ABOUT WHAT I WANT OR FEEL? My GP refuses to test for Vit D, B12 and at my last visit to the hospital the eye consultant said 'the problem is no one really knows anything about autoimmune and there is no money being invested into it because it doesn't have a profile like cancer'. Now that's uplifting on so many levels. He's telling me that he and the people that are treating me don't know anything about it. Thanks for the honesty.
Rant over. (I think my antibodies might be a little high today)
Since you are you on your own, you may as well give selenium a shot, shambles. It may not be your answer but for a few weeks shouldn't harm you either.
Oh good, shambles. I was afraid to post the recommendation for selenium/Graves because it is a very high dose. You might need more like ten Brazil nuts. I know you shouldn't take a high dose for more than three months because it can be toxic. Still, it might be something to research since you seem to be at a sort of dead end for now.
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I'm a newbie here - just diagnosed with Graves' disease
Help with Graves in remission and CT scan with iodinated contrast dye for breast cancer treatment. Can I take Carbimazole to prevent Graves.
So this is my second post with second lot of bloods.
I think I know where I’m going with this……maybe
