I’ve just had a WOW moment on reading this article. I’ve had a diagnosis of Autoimmune Thyroid Disease for 26 years. My Mother had Graves’ disease and my daughter has Graves as well.
I had a scan several years ago that showed my gland was Atrophic - in fact, there is so little tissue left that it’s considered non-existent.
I’ve read a couple of articles recently about Atrophic thyroiditis but none that really put it in perspective like this one.
My mother developed Graves’ disease in her 20s and suffered years of anxiety and being virtually unable to function, she was extremely thin, but eating everything in sight. Her doctor told her “pull yourself together or you’ll end up in the local mental hospital. Go home and have a baby to take your mind off yourself”.
So she had me. When I was 5 years old, she had gone down to 4.5 stone and had a massive goitre, then the doctor finally realised there was something wrong with her and she was admitted to hospital and was the first patient in our area to have a total thyroidectomy.
I always suspected that my thyroid problems were related to her carrying me when she was untreated hyperthyroid. Now I know that what I have is a variation of Graves’ disease but although this was a condition known about in the past, the knowledge has been lost because it’s no longer included in the medical training program.
I really feel that we need a campaign to draw attention to this lost knowledge. Does anybody else have any ideas as to how to draw attention to the condition?
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Venicefan
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Yes, it can be present with both Hashi & Graves and as few labs test for TBAb, it can remain unknown. It can also cause havoc when antibodies are elevated blocking more than 98% of TSH receptors. So yet another reason not to use TSH levels as markers for thyroid hormone levels.
I read its about shrinkage as opposed to destruction of the thyroid gland in Hashi. I don’t know about Graves except it can cause havoc when TRAb’s are at play because coming from both angles (blocking & stimulating) it can make bloods look ‘normal’ by cancelling each other out. At least with Hashi all antibodies are on the same side! (ie reducing thyroid levels).
Elevated antibodies are rubbish. I still advocate to keep them as low as possible with the all the usual means, ie healthy life style, appropriate supplements, etc.
So alarming as well that the medical profession had this knowledge and “lost” it deliberately by not including it in medical training because it was too “complicated”!!
My late husband lectures to medical students and in two medical schools over time. I myself back in the day have shown slides for thyroid lectures before the luxury of automation slides etc but I have my own feeling of where it isn’t helping us. I mentioned my husband was a thyroid researcher and as such he had to lecture to the students so my own thoughts on the subject seeing behind the scenes etc.
Yes it’s true bigger topics have more air time and thyroid got very little. I think my husband got 4 slots to cover the topic.
So first issue, lectures aren’t enforceable to my knowledge. So I think the fact that it’s a very small gland can’t compete against the heart forever example.
The remit was to say where the Rhyroid gland is and what it does. I don’t think this will have been changed but my husband wasn’t able to say much about what could go wrong and how to address it. It’s usually the clinicians that do that. His roll was to say where it is and how it works. Not what to do if anything goes wrong.
Remember as well that lectures aren’t compulsory and at the early level exam questions would probably be more on the bigger picture, heart and circulation, the brain, respiration -you get the drift!
Students then go one to the medical school with real patients. They attend ward rounds where they are actively encouraged to ask questions or they may have questions asked by a clinician who would present a patient from the ward and ask the students to comment on his/her status.
But there is something missing her! Thyroid patients do attend hospitals but they aren’t inpatients. Students don’t get to feel for that goitre or listen to that overactive heart beat. Thankfully we never get much further than being diagnosed but yes there should be a part we could be examined, discussed etc but we aren’t so the doctors in the future are not hearing from us how we are feeling, no chance to talk about our fears or issues so gain we don’t figure anywhere that matters to us and our thyroid.
I elected to have my bloods done in hospital and yes I am well treated by the experts but I mostly get my results are spot on so why am I going to them? This last time I didn’t see the usual experts but I saw a female expert who knows I take NDT but although a consultant still writes to tell my GP that we must get my TSH much higher or loosely translated she hasn’t a clue! I feel I am getting much closer to the point I shall explode and say what I’m thinking but I darent do that but hopefully I will get in some comments! I’ve got a telephone appointment tomorrow so I will try to get something meaningful across and continue to nibble away where I can!
Yes Maggie I have a couple of sugestions.I have been thinking of organising something myself- as I have been so ill with myThyroid all I can say thank God for this website I don't know what I would have done without it - Actually when I first opened it up after hearing about it I thought to myself that all my Xmas's had come at once. It was a sigh of relief I thought to myself I havnt been imagining how I felt all these years here it was staring at me all you lovely people writing in about your Thyroid problems. I took a few items to show my GP and he looked at it with a blank look on his face.
Here are just a couple of suggestions.
Everyone where ever you are - 1. Lobby your local member (Politician) preferably with a letter but we don't stop there we have to bombard them with everything we have for them to sit up and take notice. This is the time with COVID in our midst give them a blast as there has been so many mistakes made. Health Departments all around the world have failed a lot of people
2. Suggest we have a world wide petition I realise that would be a hughe job maybe each country could do one - we have a organisation I am sure it emanates from UK that could used change.org and I am sure they can handle a world wide petitions - worth a try.
That is a start - If I think of anything else will let you know - I getting a bit tired it is late down under. I hope we can do something to wake up the system.
Hi greygoose. That’s what I thought too. When you look at descriptions of Ord’s disease, it’s basically Hashimoto’s without the Goitre. That’s what I thought I had until I read this article. The Ord’s description says it’s caused by TPO and TG antibodies in the same way as Hashimoto’s, but this is different.
This article highlights another antibody TSH-receptor blocking antibody, related to the TSH-receptor stimulating antibody in Graves’ disease. It can occur with or without TPOab and TGab.
It’s saying “the antibodies that are part of this thyroid disease can significantly interfere with lifelong thyroid therapy if, or when, the antibody persists, or reappears long after thyroid atrophy has decimated the thyroid gland”.
There’s just so much information in here that I was never aware of before, I’m astounded.
It likely explains why some patients don’t show positive for antibodies even though a scan shows that the thyroid is being attacked.
OK, so what does that give as regards blood test results? Low TSH or high? Did you finally get your TSH-receptor blocking antibody tested? Did you have to do it privately?
Sorry, I didn't notice! My bad. lol Thanks for repeating it.
Very interesting article. Some of it sounds like me - I have the atrophic thyroid. But, I've never had that characteristic high FT4/low FT3. They've always been in the normal ratio for me.
So, what is it that makes you think you have Atrophic Thyroiditis?
As I said, mine is atrophied, too. I had a scan when I was first diagnosed. The technician commented on how small it was. But, my TSH was only about 11, and both my FT4 and FT3 were low, so I don't think that fits.
Hardly surprising that a complicated solution is buried when we are being pushed to T4 only solution for half a decade. It’s interesting and hopeful that more knowledge can be forthcoming
Could you post results if you find a way to test please. Took me 15 years to get T3 as I remained symptomatic on T4. Not perfect but a massive improvement. If other solutions are out there.... thanks Maggie
Mine is about half the size it was when I was diagnosed in 1996. Finally after years my antibodies are at an all time low of 12. My TSH is at .02 Ft3 in mid range and Ft4 just under range. Taking combo Tirosint/T3. PCP thinks I'm nuts but am having Functional doc follow my thyroid issue. So far so good and has been now for several years.
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