Losing Lupus diagnosis

[linda96]

I was diagnosed in 2010 with lupus, and 2012 with secondary sjogrens, raynauds and antiphospholipid syndrome. I was also badly affected by light photosensitivity.

I had in 1978 a pituitary apoplexy and as yet undiagnosed thyroid hormone resistance. There's been a total of 17 different diagnoses over the years and I can't remember as an adult ever being that well. I'm down to about 3 diseases now.

My hypothyroidism wasn't well controlled so, after a lot of research, up to 10 hours a day, and a minimum of 6 years, I had learned enough that I felt I could start to take control of my health. Against doctors advice I decreased thyroxine, and introduced liothyronine, known colloquially as T3. Eventually I dropped the thyroxine completely, and increased T3 up to 70 mcg a day. At this point aged 68 I felt well. Not skipping and jumping well, but okay. I increased the T3 to 140 mcg.. in February last year... and lost all the antibodies to the diseases above.

My Rheumatologist said I'm effectively 'cured'. He said that he cannot attribute my loss of the antibodies to my taking T3, but can't rule it out. I'm doing further research to see why lupus would disappear taking T3.

In the thyroid gland is a membrane ROS (reactive oxygen species) protein called Thyroid peroxidase, or TPO. Attached to TPO is a Complement Control Protein or CCP. Research papers show that if this protein is compromised it can trigger a Complement reaction.. antibodies. Which I suspect has happened in my case. One paper is doi.org/en.2003-0918 Complement activation by direct C4 binding to thyroperoxidase in Hashimoto's thyroiditis.

One of my questions is, Are there two or more types of lupus, triggered by different proteins? Another would be, If scientists know that the TPO CCP can be triggered to produce antibodies, why hasn't thyroid hormones been used to attempt to treat lupus if complement is involved and hypothyroidism is also present?

Thank you for reading.

[UrsaP]

Hi linda96 They do say that if you have one AI you are likely to get more. Have you got a list of the AI you were diagnosed with and which ones have cleared using thyroid meds?

[linda96 in reply to UrsaP]

Raynauds, secondary sjogrens, antiphospholipid syndrome and lupus.

T3 'controls' the complement system so why have Doctors not used thyroid hormones, specifically T3 to treat lupus etc?

[Chris21]

hi Linda, I would assume it could be that lupus in itself is a starting point to diagnosis, we all seem to then continue with secondary problems added on or vice versa.

When I have my routine bloods done, T cells are checked and always are within range as also, so far (fingers crossed) I don’t have kidney involvement. Many people on the forum have various medications that doesn’t apply to all. The things you mention I’ve never heard of so therefore it’s possible why this is not given to all? I’m pleased that it has worked for you. The interesting bit for me, is that you did it by yourself without professional advice. I hope you continue to explore different theory’s and share with us. 😊

[linda96 in reply to Chris21]

Hiya Chris21, I think that when a lupus diagnosis is imminent, then a complete thyroid test should take place. It is known that T3 is a big part of the complement system. The big problem here is that complement is a Rheumatologists purview and thyroid gland issues are under Endocrinologists. My Rheumy and Endo are in the same corridor of the same hospital, and while I've suggested to both of them to talk to each other, I don't think they have.

[nottypical]

Hello Linda,

I reckon that lupus, like cancer, is a term that covers lots.

[DebbieJ6894]

Hi Linda, your history is very interesting - clearly more research is needed. My own history is that I have had symptoms which can be secondary to lupus for years, but no lupus diagnosis because I only had positive antibodies for lupus in 2021 when being checked because I'd developed raynauds for the first time (bloods had been checked regularly prior to 2021). It might be that I had primary sjorgens, arthritis, hypothyroidism prior to 2021 and then lupus reared its ugly head with raynauds as a symptom, but I tend to think it's always been there but antibodies dormant. Interestingly, I developed the raynauds 1 year prior to a cancer diagnosis. Not linked by medics, but my mother, who also had lupus, had flares on and off for years, but only developed raynauds as a symptom a year or so before a cancer diagnosis. Have to wonder if some cancer is auto-immune related?

[UrsaP in reply to DebbieJ6894]

Wow! Firstly so sorry about your cancer diagnosis I wish you well. I hadn’t realised there was a connection between Raynauds and Lupus? I have a friend who was diagnosed with Raynauds decades ago and has not been well most of her adult life. I wonder...

I am currently struggling to get a diagnosis of anything. I have a 30+ yrs acquired hypothyroid diagnosis. Following what I referred to as a large ‘flare’ from c Oct 19 - July 20, I was told I had connective tissue showing in my eyes in Mar 20. I had weak pos ANA showing over about 2 years, a couple of reports of speckled patterned IgG but rheumatology cannot find anything to pin it on. Primary sjogrens was ruled out following a lip biopsy, though the report following this did not mention a larger incisions being make due to difficulty finding glands, or that the glands were small and the harvester questioned them being big enough. I was told by telephone no SS inflammation found but some unspecified inflammation, again not mentioned in the written report.

I know I have ‘flares’. I suddenly slump, I have had itchy skin all my life, sore red eyes also, I have hives at times, I react sometimes in the sun, I have had ulcerations in left eye only intermittently since about 18/19 yrs of age, around the time goitres developed. All of this has happened for as long as I can remember.

They say not to test Thyroid if person ‘ill’ as levels will be out, but surely then thyroid levels are a good indicator for improvement of other things. Thyroid impacts just about every cell the body, it can’t be rocket science to reach the conclusion that thyroid dysfunction of any sort could have a knock on effect? It is very ‘Chicken and Egg’ .

[linda96 in reply to DebbieJ6894]

You too can do a bit of research to see how things knit together. The USA has collected all the published medical papers under an organisation called 'PubMed'. Anyone can access this and read all the papers. When I started to read the papers, they were gobbledegook, however, I read checked terminology and gradually I could read most of what was said and put it into context. You also have to learn to see 'what's missing'.. that is what the papers have omitted to say which might be relevant. If I can do it, anyone can.

If you do want to look at say cancer and raynauds, put this into google but add 'ncbi' after it. 'cancer and raynauds ncbi' This takes you to the papers in PubMed. Start your searches and see what you can find.

[Jumper99]

Hi Linda, this is very interesting, thank you for sharing. I’m wondering if this has had any effect on your APS blood test results too.

[linda96 in reply to Jumper99]

I don't have APS any longer.

[Pumpkin2009]

Hi Linda, Are you saying your lupus symptoms have disappeared or just your labs for lupus?

Healing hugs.

[linda96 in reply to Pumpkin2009]

All the symptoms have gone. Whereas at one time I had to sit in the darkest part of my house during the summer to avoid lupus symptoms, I'm now gardening in the sunshine.

[Pumpkin2009 in reply to Pumpkin2009]

That is wonderful. I hope you continue to be able to enjoy the sunshine.

[Sashappy]

I cannot tolerate T4 and have been on T3 since it became available which is many years ago. I was diagnosed with Thyroid disease nearly 40 years ago and started suffering from lupus symptoms back in 2005 but wasn't diagnosed until 2021 with Lupus. T3 hasn't cured my lupus and I've been on it for many years.

[linda96 in reply to Sashappy]

How much T3 are you taking? I found that I had to get above 70mcg a day before the antibodies abated. I learnt that for me, T3 is the most important hormone in the body. It may be that you need, like I did, a higher dose. My thought process on this is that lupus etc is a symptom of an irregular thyroid deficiency. That's why I asked is there two types of lupus. Is one a symptom of a thyroid deficiency and is the other a deficiency of the complement system?

[Sashappy in reply to linda96]

Sorry for the delay in answering you linda96 but been very unwell. I take a maximum of 40mcg and was told by my thyroid consultant I am at the maximum dosage and that I couldn't go any higher.

[fabwheelie]

Just wondering is it your Drs saying your Thyroid treatment has put your Lupus into "remission" Are your Lupus symptoms actually the ones that are better? or is it more that effectively treating Thyroid has improved symptoms such as fatigue

I don't think there is a case for using Thyroid medication for Lupus, and of course most people with Lupus have normal pituitary gland and thyroid function so giving any additional hormone such as T3 or T4 would only serve to affect the bodies normal feedback mechanisms to then influence bodies production levels. There's also the factors such as very short half life of T3 thus difficult to know how much and how often to give, it's going to affect all possible "cell metabolism" plus there are genuine medical concerns about using T3 as a medication at all because of potential side effects on heart function

If you're interested in this kind of thing you might find basic physiology/ pathophysiology and immunology details about the Thyroid role and the thyroid in the immune system interesting reading ... There is definitely a lot of science interest, research, and a lot known about that, although obviously still quite a lot that science still doesn't fully understand the complexities

[linda96 in reply to fabwheelie]

Hiya, my rheumatologist, a lupus specialist, said 'I was effectively cured'. I know 'cured' is a difficult word to think about when linked to lupus, but that was the conversation we had.

I dose T3 4 or 5 times a day. I have a smart watch and programme it, I always have T3 about my person. You are worried about heart function, but when I was on T4 I had bradycardia, slow or none existent heartbeats. T3 got those heartbeats back on a regular basis.

There's a case study available on PubMed where a lady when into hospital with a swollen leg and feeling poorly. A doctor authorised thyroid function testing just to get an overall picture of health. The lady turned out to be very hypothyroid - and the swollen leg was the only outward symptom of it. Is it so strange that thyroid dysfunction in people with deficient complement systems would appear as lupus?

[fabwheelie in reply to linda96]

Lupus itself not with any additional diagnosis can affect the complement system. As our immune system works eg in inflammatory responses, against bacteria or viruses, against "self" in autoimmune diseases such as SLE complement proteins get used up. Rheumatology consultants often even use the complement proteins C3 and C4 to help indicate lupus disease activity... Add in other diagnosis,.or additional thyroid disorders caused by autoimmune reactions, and the picture probably becomes even more complex.

I doubt it is that thyroid dysfunction giving complement dysfunction is the reason any Dr would give Lupus diagnosis . Lupus diagnosis is usually very specific and carefully evaluated before a Dr would give SLE diagnosis. However obviously a lot of thyroid symptoms do overlap Lupus symptoms.

Just wondering have you researched if complement deficiency is actually very common in thyroid disorders.. that's something I have not personally researched, but I do have good education in Biomedical science including studies about Immunology

[linda96 in reply to fabwheelie]

Yes, I’ve researched. Up to 18% of thyroid patients have lupus symptoms. I’ve found that the % varies between 6-18%, which is much higher than would be expected. Also international, as I have a friend in Canada and she’s been diagnosed with thyroid and lupus.

In the thyroid gland is an apical membrane that houses Thyroid peroxidase (TPO). As the immature thyroid hormones pass through this membrane they mature in the presence of the TPO via ROS. The TPO molecule itself is quite long, about 12 exons. Attached at about the 4/5th exon, is a ligand - complement 4.

Hope this helps.

[fabwheelie]

For anyone interested these YouTube videos have quite good "easy to understand" medical explanations about the Thyroid and Thyroid physiology , Hypothyroidism and Hyperthyroidism in the part 2 m.youtube.com/watch?v=eQZfs...(Not working as expected?)

m.youtube.com/watch?v=D6ClV...(Not working as expected?)

[maggielee]

Remission? I could only dream of that.I was trying to send you a link on Lupus UK youtube website on lecture in Cardiff Information Day recently that I attended. The lecture is by Dr Kaul on blood tests for lupus, wonder what he would say about it? Check it out.

Doesn't medication control lupus etc., but not cure it or take a chronic disease away? M

[linda96 in reply to maggielee]

Not remission, my lupus specialist used the word "cured". I have no complement system antibodies to these diseases, so cured is the right word. I will look for the lecture by Dr Kaul.

I was told by a lupus specialist Professor that I would have lupus for life and have a normal life span. This was about 13 years ago. As said previously, does rheumatology and endocrinology talk to one another, cus I don't think they do. If they did then these overlapping issues might get some research money.