Would changing gender help?

[Maria3667]

A bit of a weird question maybe, but would changing from female to male (FTM) abate our syndrome?

I'm wondering about this because Sjogren's has often been connected to levels of low androgens (in the predominantly female population). I know raising testosterone levels lessens mouth & eye dryness. For one, I've experimented with low dose testosterone for years.

However, increasing t-levels to that of biologically born males can't be the complete solution as some males also get Sjogren's.

Any thoughts?

[Carolina]

Dear Maria,

I don't think 'changing birth gender from female to male by adding testosterone' would actually change the biological birth gender which carries added risk of auto-immune conditions.

I also don't know if estrogen is the reason for the added risk.

Surely there is some research on this, and I will check.

These don't address your issue, but shed some light on related research:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2527069/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4701921/

There is no research I can find related to reduction in AI for female to male transgender patients.

Regards,  Elaine

[Joe S.]

As a male, I would say no. My research showed that there is a difference between male and female testosterone from a frequency standpoint. One cycle per second is the difference between the two. Getting the right kind of Testosterone will make the difference in how well it works.

I believe that management is the key to living with this disease.

[Maria3667]

@Elaine: interesting links! But they also raise more questions. I never knew females had a much higher rate of AI-diseases. Also, the second link seems to suggest estrogen is the culprit, but then how come Sjogren's typically manifests itself around menopause when levels decline? Seems contradictory. It probably proves major pieces of the puzzle are still missing. Like you I couldn't find info regarding  a transitioned FTM who had Sjogren's prior and saw it vanish due to TRT.

@Joe: so do you think you have the same type of oral and ocular dryness as female sufferers? I've never heard of a difference between male and female testosterone. As far as I'm aware the difference lies in the biological receptor distribution and of course the level of production.

[Kristian]

I definitely do not think changing gender would help at all.  I am a 37 year old man and a side effect for Men of Sjpgren's is that is reduces your Testosterone to about nothing.  I take a Testosterone replacement and am back up to a high level of Testosterone but have had no change whatsoever in SJS symptoms.  Some people get a a significant reduction in aches and pains from the Testosterone boost and it definitely improves metabolism, but not benefit to SJS from my experience.  Hope this helps, feel free to message if you want to ask anything else.

[Maria3667]

Hi Kristian,

Wow that's so intriguing! And I guess a profound answer to my question. A definite no, then!

Good to hear from another male patient on this forum. So do you know if Sjogren's reduces testosterone in all male patients? That could be a big clue - especially since raising the level does not resolve the syndrome (or could that be due to the fact that the substitute testosterone is made from bulls and thus is not 100% bio-identical?).
Also, are the hallmark symptoms of ocular and oral dryness the same as in female patients? Or do you have markedly different symptoms?

Thanks for your insight!

[WhatYouSjo]

My testosterone was tested as part of my diagnosis journey in the years after my SS symptoms manifested. My level was quite healthy, though my binding globulin was slightly high. I have not had my testosterone levels tested since then, though the endocrinologist did not find the results concerning at the time.

Unfortunately, there is very little data on men with SS, so it is difficult to identify patterns.

[vrystaat]

The first time that I had my Testoterone level checked over 10 years ago, it was low. Since then I've had to use
Androgel. This works very well. As with many drugs, its price has rocketed from $200 for a 3 month supply to $500.
Going outside the country is very hard, as its a known abuse drug. I get mine from Israel. Write to me privately, & I'll let you know where.

[Kristian]

Maria3667-
I do not think I or any of the men have markedly different symptoms than women, the books I have read said most males tend to have more severe symptoms (only books as I do not know that many SJS patients personally). 

As for my symtoms I ahve pretty crazy dryness tha is greatly helped by Exovac 4-5x per day.  Without exovac I choke on food and can only talk for about 10 minutes as my voice would ghet so hoarse I would physically have to stop talking.  I probably use eye drops 10+ times per day, I had to use about hourly before and would wake up with completely dry eyes taht I ahd to force open to get a drop in to start the day and see again; my nose also dries out a lot.  The exovac and applying a saline gel or polnaris emolient once during the day and once at night does the trick since the exovac, could not keep moist at all before.

Hope this give you an idea of the mail symptoms.  Mine are probably more sever than other men given I also have Hashimoto's Thyroiditis and Ankylosing Spondylitis.


What about other guys on the site?  Do you think your symptoms are the average for an SJS patient or different?

Thanks,

Kris

[Carolina]

Hi Kristian:

I have a couple of thoughts, tho' they are just based on observation, not data.

1. Men tend not to pay close attention to their health, in general.  It takes a great deal of discomfort/pain/symptoms before most men will seek medical attention.  This would mean, to me, that men may then present with more severe symptoms when seeking help and then getting a diagnosis of Sjogren's or any other condition.  Men with less severe forms of Sjogren's suffer in silence.

Testing of a random sample of men would be the only way to determine the actual incidence/severity of Sjogren's in men.   

When elderly Japanese patients with neuropathy were tested for Sjogren's, a high number were found to have Sjogren's although they did not complain about their symptoms and had not been diagnosed with Sjogren's. 

Garden variety Sjogren's is probably missed as a diagnosis more often than not in both men and women.  And even then, a diagnosis of Sicca would be more common.  So often the required tests for Sjogren's exclude a diagnosis, although later the tests are positive.   In my case I would never meet the criteria for a Sjogren's Diagnosis, since I have no autoantibodies.  I have, however, extensive damage from my Immune Disorder.

2.  Women may have some protection from estrogen, since Sjogren's in women tends to appear when they are post menopausal.  I am 75 and still use a daily estradiol gel, which may be reducing my symptoms. I was totally post menopausal by age 41. 

My "Sjogren's" appeared suddenly when I was 60.  I say "Sjogren's" because my body doesn't attack my organs/systems with auto-antibodies, but with cytokines.  The result is the same but the Sjogren's diagnosis requires elevated auto-antibodies.

3. I do have to search on my bedside table , with the light on, for my eye spray, since opening my eyes in the night/morning is extremely difficult.  That is with the humidifier running next to my bed, two Pilocarpine at night, etc. 

4.  Your other auto-immune conditions are part of the profile of those of us with the most difficult forms of Immune Disorders.  Progression to neurological complications, or even starting with neurological problems, is also part of the more difficult form of Immune Disorder. 

I look forward to hearing from other men.

Regards, Elaine

[Sharon]

I've experimented wth testosterone cream and accidently must have used too much
because my levels sky-rocketed as my blood test showed.
I experienced no improvement at all in sicca symptoms from the testosterone,
but it did however help my fatigue, general weakness and libido.

Another interesting question:
If changing your gender to male could actually abate SJS- would you do it? 

[Maria3667]

Another interesting question:
If changing your gender to male could actually abate SJS- would you do it? 

Hi Sharon,

Well, if it would actually eliminate Sjogren's and return my previous quality of life, why not? The benefit outweighs the constant suffering. Besides, I've always been a bit of a tomboy... Lol 

[Sharon]

The sacrifices we're willing to make to rid ourselves of SS.....