Author Topic: Question for male patients  (Read 374 times)

Maria3667

  • Hero Member
  • *****
  • Posts: 694
  • Good advice is one thing, applying it another
Question for male patients
« on: October 14, 2018, 03:21:57 AM »
Hi guys,

Just a quick question: have you ever had your female hormone levels checked? Or have you supplemented with female hormones to alleviate dryness? If so, did it work?

I ask this because Sjogren's primarily hits (post)menopausal females when estrogen levels fall. Contradictory some studies conclude Sjogren's is linked to androgen levels gone awray, whilst bio-identical HRT diminishes symptoms more so than with androgens (from own experience).
« Last Edit: November 09, 2018, 02:25:30 PM by Maria3667 »
50. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex

Joe S.

  • Hero Member
  • *****
  • Posts: 7571
  • Fibro, Sjs, RA, CNS, Diabetes, TIA's, ADHD, ptsd
    • Chakra Force
Re: Question for male patients
« Reply #1 on: October 14, 2018, 08:10:36 AM »
Not really. My testosterone is in the basement. I tried taking evening primrose. After 6 months, my wife suggested that I start wearing a bra. Since I noticed no change in symptoms, I quit taking it. My breasts went back to normal. I tried androgel. Enough for a bath with each dose. It had no effect on my testosterone levels. I quit taking it. In going through the frequency charts I noticed that there was one hertz frequency difference between male and female testosterone. Changing to the correct frequency improved my symptoms (Mumps tones plus Testosterone). I got tired of the listening to the tones for the small improvement in symptoms (Saliva). I popped two stones our of my glands. I am back to being dry as the symptoms continue in their slow progression.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Maria3667

  • Hero Member
  • *****
  • Posts: 694
  • Good advice is one thing, applying it another
Re: Question for male patients
« Reply #2 on: October 14, 2018, 02:15:16 PM »
Hi Joe,

That's interesting! But you've never actually tried real female hormones like estrogen or progesterone?

Just read this fascinating study claiming it's the modulation between hormones that's at stake. Females often get to that stage earlier because of menopause.

The scientist advice taking at least 3 types of hormones in moderation to get the system back on track.

This explains to me why supplementing with only low dose dhea and testosterone isn't enough. It's only when I add a 3rd female hormone that gets the orchestra playing in sync. Maybe this could apply to your situation too... is estrogen on the frequency chart?

Good luck!
« Last Edit: October 14, 2018, 02:27:45 PM by Maria3667 »
50. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex

Sharon

  • Hero Member
  • *****
  • Posts: 1154
Re: Question for male patients
« Reply #3 on: October 14, 2018, 02:39:32 PM »
Hi Maria,
My estrogen has always been very high and progesterone normal.
Experimenting with progesterone cream gave me some interesting but mixed results.
I never could find an endocrinologist who would get on board with the idea that SS could be
controlled through hormonal balancing.
Which is the 3rd hormone you're refferring to?
You didn't post the article you mentioned...I would really like to read it.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Maria3667

  • Hero Member
  • *****
  • Posts: 694
  • Good advice is one thing, applying it another
Re: Question for male patients
« Reply #4 on: October 15, 2018, 01:11:25 PM »
Hi Sharon,

Coincidentally, I also had very high estrogen levels before menopause! For me, reading this study is like the pieces of a puzzle falling together. How could I have missed it? It's from 2014 but not on Pubmed for some reason.

From my own experience I can tell adding a tad of estrogen to the ratio with low dose testosterone and Dhea provides the best results. The study seems to back this up, but explains the good (or bad) effects of estrogen might be age, AI and level related.

Happy reading!
https://www.giog.it/materiale_cic/756_XXXVI_2/6494_hormone/article.htm




50. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex

Sharon

  • Hero Member
  • *****
  • Posts: 1154
Re: Question for male patients
« Reply #5 on: October 15, 2018, 02:10:24 PM »
Thanks Maria!
Do you know of any good endocrinologists (anywhere in the world) who
actually attempt to treat SS through hormone therapy?
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Maria3667

  • Hero Member
  • *****
  • Posts: 694
  • Good advice is one thing, applying it another
Re: Question for male patients
« Reply #6 on: October 15, 2018, 03:31:55 PM »
Unfortunately I do not. Problem is Sjogren's is usually treated by rheumatologists and not endocrinologists (a mistake, in my opinion). Maybe you could approach one of the authors of the Italian paper?

Another viable option might be a menopause clinic as they're well informed on balancing hormones. The ratios are difficult to work out by yourself, you'd need monitoring and a dr. who can prescribe hormones .

By the way, we're veering off topic. I feel this topic warrants its own thread, don't you?
50. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex

bluegardenia

  • Hero Member
  • *****
  • Posts: 604
Re: Question for male patients
« Reply #7 on: October 16, 2018, 01:47:38 PM »
wow, i see that they are in Italy, I will write to them, may be they will answer and clarify
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

bluegardenia

  • Hero Member
  • *****
  • Posts: 604
Re: Question for male patients
« Reply #8 on: October 16, 2018, 01:59:04 PM »
I found this, I think its a resume
Abstract
Autoimmune diseases affect more frequently women. Hormonal variations in menopause modify the incidence and trend of autoimmune diseases. The dramatic decrease in estrogen levels due to ovarian exhaustion and the constant DHEA production are regarded as protective hormonal factors even though menopause has multifactorial traits: age, age at menopause onset, duration and gravity of the disease, estrogen receptor alteration, genetic alteration, interaction between estrogen and androgen receptors, progesterone and prolactin. Hormone replacement therapy (HRT) does not seem to be linked to relapses nor to a new disease in patients with rheumatoid arthritis. It is quite controversial though the use of estrogens in the presence of systemic lupus erythematosus. In this case, the risk of low to medium disease relapse in women undergoing HRT is quite significant. The use of NOR progesterone derivates and of transdermal estrogen can be more effective than E.E.C.-M.A.P system. SERMs have proven to be an effective option for the treatment of osteoporosis which is often linked to autoimmune diseases. Tibolone appears to show tissue specific androgen activity with no added mammary risk. HRT needs to be administered in low dosage to patients with autoimmune diseases and for no longer than 2 years (WHI). An alternative to HRT are: microdose TTS estrogen therapy for osteoprotection, topical estrogen for genital dystrophy, progestins for vasomotor syndrome.

60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

Judes

  • Newbie
  • *
  • Posts: 48
Re: Question for male patients
« Reply #9 on: October 16, 2018, 03:00:27 PM »
Joe I am interested to know what this frequency and tone stuff is that you spoke of, I am confused.

ignatz

  • Newbie
  • *
  • Posts: 44
Re: Question for male patients
« Reply #10 on: November 07, 2018, 04:56:47 PM »
Hello Maria,

This is interesting to me. I have Lupus(SLE), secondary Sjo and came across this recently...
https://www.hopkinslupus.org/lupus-treatment/lupus-medications/dhea/
...which I read with great interest right up until the end when it says "Men with Lupus should not take DHEA". That's it, no explanation, no link for further info, just that. Frustrating.

This led me to do some reading about hormones and auto-immune and the info out there is confusing and sometimes contradictory but there certainly does seem to be a connection.

To answer your query: My testosterone is low, in fact that was what I originally thought was causing the fatigue that turned out to be from SLE/Sjo.

Are you suggesting that males might benefit from taking estrogen? Now that's thinking outside the box  ;D. I'm open to any ideas at this point but I can't imagine my rheumy would go for it.

-Iggy
SLE with secondary Sjogrens, Raynauds. Plaquenil, vyvanse, prednisone(5mg).

Maria3667

  • Hero Member
  • *****
  • Posts: 694
  • Good advice is one thing, applying it another
Re: Question for male patients
« Reply #11 on: November 09, 2018, 02:24:29 PM »
Hi Iggy,

Yes that would be thinking out of the box. But like you I keep bumping into these contradictions in studies. Most say we're androgen deficient, but then many others draw conclusions like this one:

"Disease manifestations in primary Sjogren's syndrome were associated with low sex hormone levels, dry mouth symptoms with low androgens, and dry eyes with low estrogens."

Judging by these symptoms, could men with dry eyes benefit from estrogens? Has anyone tried yet?

From body building forums, I know men dread 'b*tch t*ts' when taking too much testosterone which by aromatase converts to estrogen. Conversely you could argue that if androgen levels fall, the body can't produce estrogen and thus no eye moisture.

If you were to try, I'd opt for bio-identical estrogen and not synthetic as it aggravate symptoms, so I've read.
« Last Edit: November 11, 2018, 09:17:10 AM by Maria3667 »
50. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex