FTMs with Lupus or other autoimmune diseases

[utouto]

Hey,

I'm in the process of being diagnosed with a(n) autoimmune disease(s). Looking like Lupus and Sjogren's at the very least. Are there any other guys who struggle with autoimmunity? I have a few questions:

Were you diagnosed before or after starting testosterone?

How does testosterone affect your symptoms? How does it affect bloodwork/lab values?

If diagnosed after starting testosterone, how might T have impacted time to diagnosis?


There's a huge amount of research that connects estrogen to a higher likelihood of developing autoimmune disease. There are case studies on MTF patients who develop autoimmunity after starting HRT, but absolutely NOTHING on autoimmunity in the FTM community. Testosterone has been shown, in animals, to protect against autoimmunity (especially Lupus) and studies on human immune cells show that T modulates immune function in a way that reduces inflammation and killer cell function. Unfortunately, I think that Testosterone is actually preventing a timely diagnosis in my case because it's additional ability to normalize lab values. In studies done on cisgender men with Kleinfelter's Syndrome (have XXY chromosomes, can't create enough sex hormones on their own) who were diagnosed with Lupus, Testosterone therapy normalized nearly all of their lab results -- inflammatory markers were all normal, and antibody tests came back lowered.

I figure that testosterone is causing a similar response in me as I first became ill when I had been without T for over a month (and had been under dosing weeks before that). My guess is that I had accidentally let my body start producing estrogen again, and that is what triggered my autoimmune response. So far the only blood test I've had come back for autoimmunity is an ANA of 1:640. Very frustrating since most physicians make labs the be-all-end-all of diagnosis, often looking over obvious clinical signs. :\

[Cindy]

Diagnosis of Lupus and Sjogren's is pretty straight forward nowadays. A raised ANA is non-specific and doesn't give a differential diagnosis of what autoimmune response you may be having.

You do need to see a specialist Rheumatologist to help with this and need a referral from you GP (family doc), Lupus would be the greater concern due to renal involvement, Sjogren's is usually treated symptomatically.

Couple of points, do you have dry eyes and/or mouth? Do you have a facial flare?

I would consider neither condition a contrary indication for going on T, but you do need careful monitoring by an endo and of course you autoimmunity expert.

An ANA of 1/640 is higher than normal but not particularly dramatic, the ANA is nonspecific and by itself would not lend a differential diagnosis. For Sjogren's you need to be tested for antibodies to Ro and La which would give the differential diagnosis. For Lupus you need careful monitoring of kidney function.

My comments are not a medical opinion.

Hugs young man. Look after your general health and don't worry! Easier to say than do I know.

Cindy

[Dante]

Hi! I don't have Lupus or Sjogren's, but I have Hashimoto's, which is probably one of the less severe autoimmune diseases. I don't know how much is applicable across different diseases but I'll answer your questions and hopefully some of the information will be helpful. (Usual disclaimer; these are my own experiences and opinions and don't constitute medical advice.)

Were you diagnosed before or after starting testosterone?
I was diagnosed with hypothyroidism about a half a year before starting T, and was subsequently diagnosed with Hashimoto's in December (around 6 months on T).

How does testosterone affect your symptoms? How does it affect bloodwork/lab values?
I'd be inclined to say it doesn't affect either. My symptoms are pretty well under control through medication, and I didn't notice any returning/worsening of any symptoms or any improvement of the ones I still experience commonly after starting T. Lab values also seem to be the same.

If diagnosed after starting testosterone, how might T have impacted time to diagnosis?
My doctors have been keeping a watchful eye on my thyroid since I first came in with symptoms, since my mother also has Hashimoto's. My antibodies came back extremely high, so it was clear that I had inherited the disease.

All in all, I'd say T & E don't really affect autoimmune diseases past the initial point of inheriting/developing them, which is more likely to occur in females, as you already mentioned. But, if you're fairly certain you have an autoimmune disease and your doctors aren't taking it seriously because of lab values, you might consider going off of T for a short time and checking the values again, especially if the ones you're suspecting have shown differences in lab results with different sex hormone levels. Autoimmune diseases can wreak havoc if they go unchecked, so be persistent with it until you're sure either way.

Interfacing with doctors and trying to get an accurate diagnosis can be a huge pain, but hang in there!

[utouto]

Diagnosis of Lupus, Sjogren's, and many other autoimmune diseases are actually notoriously tricky to come by. Diagnosis of autoimmune disease requires a doctor being able to think outside a checklist and truly listen to patients, skills which are seriously under-prioritized in the education of physicians (and in the culture of medicine as shaped by insurance companies). The average time from onset to diagnosis for a Lupus patient is something like 3 - 6 years. Much of this is caused by physicians using outdated criteria meant for clinical research (not diagnosis!). I'll stop myself here before I go into a rant about all the things wrong with the medical system.

Dry eyes, dry mouth, dry nose, etc. Lupus symptoms include everything from joint pain and hair loss to serositis and proteinuria. Rheumatologist said he thinks I'm "pre-Lupus" and would start treating for it if my inflammatory markers started coming back positive (therein lies the problem... Have the symptoms, but not the "right" test results.)

[Cindy]

Ahhh I'm a Prof of Immunology and a hematopathologist

While my speciality is haematological malignancy, half of my department is focussed on autoimmunity and is the reference centre for Australia.

But I do not use my medical qualifications on site. That would be inappropriate.

[utouto]

All in all, I'd say T & E don't really affect autoimmune diseases past the initial point of inheriting/developing them, which is more likely to occur in females, as you already mentioned. But, if you're fairly certain you have an autoimmune disease and your doctors aren't taking it seriously because of lab values, you might consider going off of T for a short time and checking the values again, especially if the ones you're suspecting have shown differences in lab results with different sex hormone levels. Autoimmune diseases can wreak havoc if they go unchecked, so be persistent with it until you're sure either way.

Interfacing with doctors and trying to get an accurate diagnosis can be a huge pain, but hang in there!

I've thought of talking to my doc about coming off of testosterone to see if the labs change, but I can see how they would be really uneasy about that because of the possibility of me getting much more sick. I already know that I get worse if I go without it for 1 or 2 weeks, so the risk of complications is there...

I'm on disability, so I know a bit about how much havoc can be wreaked as a result. :\

[Questioning]

I'm not out as trans, so I can't help you but I am probably FTM and definitely have Lupus. So, I just wanted to thank you for bringing up this topic as I was wondering this too.

For what it's worth, I'm obviously not on T at this point but I got diagnosed within a year of going to my rheumatologist. But I had a history of juvenile rheumatoid arthritis and my ANA level was consistently super high (around 1:1250) so my symptoms were pretty straightforward. I also think that this sort of thing can often depend on which doctor you happen to go to.

I do find that my symptoms are connected to hormonal fluctuations. But if I were you I probably wouldn't go off T if I knew it made me worse. Obviously this doesn't constitute medical advice.

[surfingcam]

I am ftm and have Lupus and Sjogren's among other ai crap.  I was on T for 7 years before being diagnosed.  My only positive ana was1:160 and has not been abnormal since being diagnosed 7 years ago.  I also have Antiphospholipid Antibody Syndrome or Hughes Syndrome.   This has all been a horrible nightmare for me, as I have not been allowed to have bottom surgery because of these stupid diseases.  I was almost diagnosed 15 years before transitioning, but the doctor changed her mind.  I am sooo mad at how my life has gone because of my Lupus.  I wish I would have been diagnosed before transitioning because I would never have done it.  I feel as if I am stuck in a gender holding pattern.  I have had top surgery but am forced to hold off on the bottom surgery.  I had to stop working and go on disability in 2011. 
I hope you find a good doctor and can get all of your surgeries, if that is what your heart desires. 
The T has no affect on my labs as far as I know or maybe they would be even worse if I were off of it.  Know this, cismales get Lupus and Sjogren's too.  I don't know if their T is low or not.  All I know is that it took many years of on and off sickness to get diagnosed.  It wasn't until after I started T that I was didiagnosed with something they said I may have before T. 
Feel free to email me if you have more questions.

-Cam

[ElijahWalker]

I'm glad to find this post. I am FTM and started testosterone about 3 years ago. After two years on T, I decided to go off of it just because I had limited access to appropriate healthcare in my area. I was scheduled to have top surgery in April of this year, and during my pre-op tests, they found that I might possibly have lupus. They ended up letting me have surgery (hooray!) but we're addressing the possibility of lupus again at my next appointment with a hematologist next week. I've been doing a fair amount of reading, and I'm wondering if going back on testosterone might be a possibility for treatment? I only say this because my tests were always normal while on testosterone; it was only after I had been off of it for a little while that symptoms started to flare up and test results were abnormal.

[Cynobyte]

Im m2f.  Alot of my symptoms started from low t.  I have systemic lupus, anklosing spondelosys, asia, and almost every hormone system in mybody shut down.  What I want to warn you about is fibrosis!  First when  this started a few years ago, they said I must take testosterone to raise my levels above 40s.  I agreed, but within that year, I developed fibrosis in my lungs, stomach, both testes, any left femur.  I also have these odd scans not of the old brain; (  I just wanna say some hormones affect one person different from another..  My issues are protein based and possibly from an active delta 32 gene..  I first chose iv chemo to stop the progression,  now on immunosuppression.   Cant stay on the same drug more that a few months, my immune system overcomes it.  Im a big believer in vaccines,  but the anthrax trials they did to us were wrong.. 

One thing with lupus, you may develope an allergy to certain proteins, in my case was beef..  I love steak, but now eating one is like dumping acid in my blood:(

Last point, your lupus is not the same as the next person.  You have to research your own cures and fight for them, otherwise your disease can progress and it only gets worse. 

In my case, im on the largest doses of pain meds, I see alot of drs for pain.  They say you get used to it, but you wont..  just stay on top of it, or you will be like me.  I used to love the snow and rain, now id perfer to cut off my own leg with a butterknife..  good luck!

[rorythedinosaur]

i'm reviving this topic since i started T 5 months ago and i am starting to think i have sjogren's.

i always had an history of auto-immune symptoms, i've been tested for lupus among other stuff, but all anybodies were negative. I had some cryoglubinemia which sometimes comes back and sometimes disappears, but other lab tests were negative 1,5 year ago (last time i tested).

It's been a couple of months now that i am having very dry eyes (really hard to open em in the morning), photophobia, and dry "down there". I also have dry nose (but i have it very often, anyways). My skin dried a lot on my hands. I am pretty scared to discover i have sjogren's because i know the disease and quality of life gets crashed.

I will come back to my doctor (immunologist) in a while. IN the meantime, can somebody tell me

1) if these symptoms can be due to T
2) which lab tests can i make in order to come to my doc with something in hand (i guess ANA, and sjogren's antibodies? i guess there's 2 of them, am i wrong?)

[cartowheel]

I've had type 1 diabetes for around 24 years now, and I'll be starting T soon - this was one of my biggest concerns regarding T, but I've been told by many, doctors and others alike, that T and diabetes shouldn't effect each other.  However, it's common knowledge among the diabetic community that puberty can make your blood sugars go a little crazy (went through that my first go round with puberty) no matter your sex, and it can make those with menstrual cycles have their blood sugars run high for that time.  So it makes sense that the new surge in hormones would effect blood sugar right?  I'll definitely be keeping a pretty close eye on my blood sugars until the T kinda mellows out, though.

But, uh, who really knows until you go through it, amirite?

[Maurits]

Hi Rory,

So how are you doing now on T? Still bothered by dry eyes?

I was diagnosed with Sjogren's approx 20 years ago and am currently in the pre-FtM phase (at age 51, yeah a bit late, I know)...

However, last 2 decades I have experimented with low dose testosterone gel. Before menopause T seemed to help lubricate my parched eyes (and mouth), but once I entered menopause low dose T alone doesn't seem to cut it. Either I need more and/or have to surplus with something else. As there's no reference, I'm not sure how to commence..

On another forum I read about a transguy who initially was troubled by dry eyes, but it seemed to pass after 9 months on T or so...

I hope you're doing okay now! I'd love to hear your experience.

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