Discussions By Condition: I cannot get a diagnosis.

skin/adrenal problems PLEASE READ

Posted In: I cannot get a diagnosis. 15 Replies
  • Posted By: niceguy
  • August 26, 2008
  • 01:35 AM

I and my identical twin brother have a weird genetic disorder. At the age of 16, we became hyperprone to stretch marks and so I avoided serious athletic exercise. At 24 I developed rosacea and neck ring wrinkles. At 28.5 I developed two stomach wrinkles, stretch marks from sitting, persistant folliculitis, black heads on my nose, back acne, and delayed wound healing. I had a battery of blood tests done and so far the only that has come back abnormal is that i have 3 times the dhea and very low salivary, secretory IgA. Anyone have any ideas? I don't know immunology very much. I don't have hypermobile joints (no Ehler's Danlos) or high cortisol (no Cushing's syndrome). I am normal weight, normal blood pressure. There are so many smart people on this site. Please let me know what you think. Anyone heard of people with similiar symptoms? I can only think that my skin and my adrenals are hypersensitive to cortisol. Please help!

Reply Flag this Discussion

15 Replies:

  • I recently found out I have IgA deficiency. Basically, there are five major types of disease-fighting antibodies. The IgA antibodies fight infections that pass through the mucosal (mucus) membranes. This can cause skin problems. Also, there are versions of Ehlers-Danlos that *do not* involve joint hypermobility. I think you should see a geneticist if you haven't already.
    aquila 1263 Replies
    • August 26, 2008
    • 07:03 PM
    • 0
    Flag this Response
  • I have seen a geneticist and I don't have stretchy skin or hypermobile joints or weak bones, just weak, prematurely aged body skin and striae. I have normal cortisol and normal blood pressure so I don't think I have Cushing's. I think my skin is hyperresponding to cortisol. What are you doing to fix your low IgA? What caused your low Iga?
    niceguy 22 Replies
    • August 26, 2008
    • 07:25 PM
    • 0
    Flag this Response
  • what tests did the gentecist run? Have you seen a rheumatologist or dermatologist?
    qwertyuiop123 453 Replies
    • August 26, 2008
    • 09:35 PM
    • 0
    Flag this Response
  • Basically touch the floor, pull your finger back tests. She didn't offer to sequence collagen I and collagen III. I don't have hypermobility, no bone/ligament/tendon problems. Just skin. I have 3x the dhea for some reason. I think my skin and my adrenals are hyperresponding to cortisol signaling (and the adrenal zona reticularis is upregulating the dhea to compensate). The geneticist described the skin on my body as old looking (my face doesn't seem to be affected much). One dermatologist didn't care at all and one dermatologist seems interested but didn't have any ideas for testing. I would like to have my dna sequenced but that costs big money.
    niceguy 22 Replies
    • August 26, 2008
    • 09:51 PM
    • 0
    Flag this Response
  • keep checking back, I'll research and see if i can find anything, it helps knowing that your twin brother has the same condition, it has something to with genetics, i'll look into genetic conditions, chromosomal problems, my advice about doctors not caring or not wanting to take time to figure it out would be to look for doctors in your area who would benefit from seeing you, such as a doctor who is trying to discover what causes stretch marks in men, or something like that. If you let me know where you live, i will keep my eye out while researching.
    qwertyuiop123 453 Replies
    • August 26, 2008
    • 11:22 PM
    • 0
    Flag this Response
  • well, you learn something new every day, stretch marks have nothing to do with stretching, they have to do with hormones.... http://www.stretchmarks.org/causes.html
    qwertyuiop123 453 Replies
    • August 26, 2008
    • 11:47 PM
    • 0
    Flag this Response
  • Stretching and hormones cause stretch marks. The hormones cortisol weaken your skin and it tears from the stretching. Also mutated ECM components can lead to stretch marks from stretching. You don't get stretch marks without some kind of pressure.
    niceguy 22 Replies
    • August 27, 2008
    • 01:18 AM
    • 0
    Flag this Response
  • I live in norfolk, virginia
    niceguy 22 Replies
    • August 27, 2008
    • 01:21 AM
    • 0
    Flag this Response
  • how old are you and how high was your dhea, and how low was your iga
    qwertyuiop123 453 Replies
    • August 27, 2008
    • 01:29 AM
    • 0
    Flag this Response
  • Age is 28.5, dhea is 1600 (normal is 200-770) in blood. In saliva dhea was too high to measure (>1000, normal is 330). My sIGA is under 6, normal is 20 to something.
    niceguy 22 Replies
    • August 27, 2008
    • 01:51 AM
    • 0
    Flag this Response
  • http://www.intmed.vcu.edu/home/welcome/nestlerbio.htmlnestler@hsc.vcu.edu This is an example of a doctor you might try contacting, i suggest him because he has done a lot of research on dhea and therefore may know more than other doctors about what would cause dhea levels to be elevated
    qwertyuiop123 453 Replies
    • August 27, 2008
    • 02:12 AM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • I'll try contacting him. But all the endocrinologists I have talked to have said they have never heard of men having elevated dhea. I am 99% sure it is causing my blackheads and backacne.
    niceguy 22 Replies
    • August 27, 2008
    • 02:34 AM
    • 0
    Flag this Response
  • They didn't bother to follow up on my IgA deficiency, so I dont "officially" know the cause. Yet as a researcher I've done my own investigating. For as long as I can remember I've had allergies and have been prone to every cold, flu and stomach bug that goes around. I have Turner syndrome-- i.e. I'm missing an X chromosome. IgA deficiency is common in Turner women. I think you should take a look at this: http://findarticles.com/p/articles/mi_m0ISW/is_268/ai_n15893085 I believe my problems may have to do with food intolerance, possibly celiac disease. I'm considering "helminth therapy" for my problems, but it's risky and untried, not to mention tremendously expensive. You can read more here: http://www.boston.com/news/science/articles/2007/12/31/his_parasite_theory_stirs_a_revolution/ I'm not advocating for you to try this, and also I have no commercial ties to this treatment. I'm just a desperate patient looking for relief.
    aquila 1263 Replies
    • August 27, 2008
    • 04:22 PM
    • 0
    Flag this Response
  • I suggested that doctor because he called a conference about dhea, he is studying its reaction with insulin or something like that, it seems he's pretty into it, as alot of doctors are right now because it is believed to be the fountain of youth hormone, so he may know what causes dhea to be elevated, or he might be interested in what elevated dhea might cause, since i believe he thinks people should take it. It seems like both wrinkles and stretch marks may be caused by damaged collagen... although you don't have dislocating joints or stretchy skin so that doesn't really make sense... oh and your right about the acne, it studies show that dhea causes acne
    qwertyuiop123 453 Replies
    • August 27, 2008
    • 07:30 PM
    • 0
    Flag this Response
  • DHEA ‚ low dose for men or women over 40 years of age. Dr Brownstein's recommendations: For men over 40 ‚ 25 mg 3 days a week (Mon, Weds, Fri). For women ‚ 10 mg daily for 5 days per week or 25 mg twice a week (e.g. Mon and Fri). Have your physician monitor DHEA levels after 4 to 8 weeks. Brownstein advises against high doses of DHEA (over 25 mg daily) as this can reduce adrenal production of other hormones After reading this i wonder if the low iga is caused by having such a high dhea?
    qwertyuiop123 453 Replies
    • August 28, 2008
    • 11:38 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.