12 replies to this topic

[michi31]

Hi guys. I went to see my endocrinologist today to check up on my blood pressure/electrolytes with Spiro. I have basically been obsessed with hormones and how they effect the skin lately, so I thought I would ask him all my questions. He has been a very good doctor and he went to Harvard med school so I trust in what he has to say. So here are some Q and A's for anyone who is interested.

 

Q: I'm afraid that Spiro won't work because my testosterone is so low and so Spiro will make it worse.

A: Well we don't know what's happening at the skin level. There could be higher levels of testosterone and DHT in the skin that don't show up in the blood. Spiro would compete with these to block the androgen receptors in the skin. We just don't know though and have to wait and see.

 

(This is good news - but wouldn't this ALWAYS be the case for women with acne whose testosterone levels are normal - or low? If so, why wouldn't Spiro work for ALL women?)

 

Q: But what if it's not that I have higher levels of testosterone and DHT in the skin, but rather my androgen receptors are just really sensitive to low amounts?

A: This would be extremely rare, and a genetic fluke.

 

Q: What if the problem is that my estrogen is too low?

A: You would have elevated FSH and you don't. Also you were able to carry a pregnancy which shows your body isn't in premenopause or something. (He didn't say or something, I just can't remember how he finished that thought)

 

Q:What if my progesterone is too low?

A: Again, you were able to carry a pregnancy.

 

Q:What about the theory of estrogen dominance, that there is bad estrogen due to low progesterone?

A: This is "fringe thinking". There just hasn't been any work done to prove that or how it would effect the skin.

 

Q: Why do women have an initial outbreak? Why does the pill work for some and not others?

A: There are many variations that have not been studied, many genetic variations. No one has looked at this. There has to be the money so someone can study what happens in the skin. We just do not know.

 

(Freaking UNBELIEVABLE! Are you KIDDING me that no one has wanted to study how variations in the skin are impacted by hormones? I feel like this is gender discrimination or something. I mean, I've seen clinical trial with rat skin and what not but maybe that's not the same thing or they didn't puruse it enough. Ok, rant over)

 

Q: Why does Spiro take so long to work?

A: No one knows. But it takes 6-9 months. Although adverse effects would probably be seen sooner.

 

(Awesome)

 

I find this stuff super interesting. If anyone else has these types of conversations with doctors please fee free to share! I'd love to hear what others have to say.

 

[Green Gables]

Yep...a lot of "no one knows." At least he was honest with you.

 

It's not gender discrimination. Women patients aren't standing up for themselves. When I go into a doctor I basically go in like a man. I'm there for a purpose and I'm not leaving until my needs are satisfied. I see all these women tiptoeing around doctors, not asking questions, just wanting a "magic fix", treating doctors like god, etc.

 

So if most of your women patients are happy with Accutane or the latest birth control pill, practicing doctors have no motivation to do otherwise...and no one has any idea that this is a research need, because we aren't expressing the need.

Edited by Green Gables, 01 February 2013 - 09:08 PM.

[wicky]

I've encountered many drs and many I dont knows as well.  I am 45 and have struggled with many skin issues over 30+ years.  In my quest for better skin it has only gotten worse.  I now have rosacea as well as seborrheic dermatitis and cannot stand to even look at myself anymore.  Nothing and I mean nothing has worked.  Here is what I've learned though thru massive amounts of blood work. 

 

* Doxycycline did nothing for my random spot or redness

**Spiro didnt do squat either.  Stayed on this for 18months and no improvment despite going from 50mg up to 100mg. It only made me dry

**Low dose accutane of 20mg once a week only aggrevated my seborrhea

**Dietary changes over two years ago hasnt helped in the least in fact my skin was better when i ate crappy. Intolerane testing has proved severe to many foods such as soy, tapioca, sunflower, polysorbate 80 & egg.  Have you ever read the ingredients of any box?  Either of those three are in EVERY food.  I also was moderately sensitive to chicken, rice (really???), wheat, spelt, carrots, onions, and many more seemingly healthy foods.  Its ridiculous and I have not developed food phobias.  I cant go anywhere to eat and basically avoid other high histamine foods that aggrevate rosacea like eggplant, bananas, pork and spinich even though I tested ok for those. 

**Bio Identical Hormones have produced minimal results as well. I was compounded a cream based on my hormone levels and have been applying this to my skin (arms, legs, feet and wrists) for 6 months.  I had FSH levels of a woman in menopause that were 75 and practically no estrogen and progesterone despite applying the cream for 6months.  My dr now said I had low testosterone and need a small amount and I had too much bad estrogen and not enough good.  She also recommended a cream of progenolone and testosterone and a separate one of the estrogen and progesterone. 

 

I truly dont know why I wake each day to red raised bumps on my lower jawline every day.  Also when they finally fade they will re-surface in the exact same spot.  I find this strange as its like it re-flares or something.  I have often wondered why spiro didnt work for me as anything in and around the mouth and jaw was indicative of something hormonal.  So why isnt anything working??  

 

 

I had three nodules on my thyroid and I now have graves disease so I'm taking Armour 60mg a day for this.

[LillyRose7]

over the past 10 years i have seen so many doctors for my pcos and skin related issues (acne). All of them prescribe the same creams over and over (sometimes i used to just shut up and roll my eyes thinking, oh here we go again, another Retin-A prescription lol), and to be honest i think that they can give us the most basic of advice but sometimes they dont know everything. They can give advice but after they give us the prescription for acne medication whether its BCP pills etc, thats only 10%. the rest of 'getting better' comes from our side, we are the ones who know ourselves best and must look at how to improve our conditions whether its hormonally related through diet, exercise and lifestyle changes, or with our skin care regimes. We are the only ones who can help ourselves. Its true what green gables said, we often look to doctors as gods with all the answers, but the real answers come from within and from self research. I mean, i have learnt a lot more about pcos and acne from my nutritional guides to managing the conditions and on the internet than a dermatologists office. Sometimes, the trip to the doctor ends up making the condition worse, and it over complicates things. I think if we find the right medication for us, whether its is hormonal/pharmaceutical/herbal and our own balance in life, then things sort themselves out. I generally try to stay away from the doctors now. I have seen 3 different dermatologists within the same clinic/hospital i go to and you would not believe the differences of opinion on things and the feedback they gave me.  I still see one of them and trust her, she is extremely honest.

Edited by LillyRose7, 04 February 2013 - 01:57 PM.

[michi31]

Hi Wicky - I'm glad you responded. I've seen your Spiro posts before and you are like me with low hormones overall. Although as my endo points out I have enough to carry a pregnancy. That's why I worry Spiro won't work for me. As I've written before, Spiro requires testosterone to compete with otherise it agonizes the androgen receptor instead of antagonizes it. Did you get worse with Spiro or just stayed the same? What kind of doctor gave you those hormone creams? Have you ever had a baby? Do you think the nodules on your thyroid could be indicative something?

I've encountered many drs and many I dont knows as well.  I am 45 and have struggled with many skin issues over 30+ years.  In my quest for better skin it has only gotten worse.  I now have rosacea as well as seborrheic dermatitis and cannot stand to even look at myself anymore.  Nothing and I mean nothing has worked.  Here is what I've learned though thru massive amounts of blood work. 

 

* Doxycycline did nothing for my random spot or redness

**Spiro didnt do squat either.  Stayed on this for 18months and no improvment despite going from 50mg up to 100mg. It only made me dry

**Low dose accutane of 20mg once a week only aggrevated my seborrhea

**Dietary changes over two years ago hasnt helped in the least in fact my skin was better when i ate crappy. Intolerane testing has proved severe to many foods such as soy, tapioca, sunflower, polysorbate 80 & egg.  Have you ever read the ingredients of any box?  Either of those three are in EVERY food.  I also was moderately sensitive to chicken, rice (really???), wheat, spelt, carrots, onions, and many more seemingly healthy foods.  Its ridiculous and I have not developed food phobias.  I cant go anywhere to eat and basically avoid other high histamine foods that aggrevate rosacea like eggplant, bananas, pork and spinich even though I tested ok for those. 

**Bio Identical Hormones have produced minimal results as well. I was compounded a cream based on my hormone levels and have been applying this to my skin (arms, legs, feet and wrists) for 6 months.  I had FSH levels of a woman in menopause that were 75 and practically no estrogen and progesterone despite applying the cream for 6months.  My dr now said I had low testosterone and need a small amount and I had too much bad estrogen and not enough good.  She also recommended a cream of progenolone and testosterone and a separate one of the estrogen and progesterone. 

 

I truly dont know why I wake each day to red raised bumps on my lower jawline every day.  Also when they finally fade they will re-surface in the exact same spot.  I find this strange as its like it re-flares or something.  I have often wondered why spiro didnt work for me as anything in and around the mouth and jaw was indicative of something hormonal.  So why isnt anything working??  

 

 

I had three nodules on my thyroid and I now have graves disease so I'm taking Armour 60mg a day for this.

Yeah LilyRose, I agree that we have to be our own doctors. I have found that more and more. Now I pretty much go to doctors just to get prescriptions for things I've already figured out I want to use. I studied these hormone issues to death only to have the endo confirm that we just don't know. So I'm not going to find an answer so at least I can stop obsessively reading studies. I obviously have an androgen problem with the facial hair and acne only on the chin, but all my blood androgens are very low. It's all in the skin and no one know exactly what's happening. I was almost diagnosed with PCOS as well but after they discovered the low androgens, no ovarian cysts and the fact that I'm thin they decided I didn't have it. But I've been eating paleo for the hell of it, I'm on Minocycline, Spiro 100mg and Retin-A every other night. When I come off the Mino the truth will kick in about how the Spiro is really working for me. How is the Belara working out for you so far?

over the past 10 years i have seen so many doctors for my pcos and skin related issues (acne). All of them prescribe the same creams over and over (sometimes i used to just shut up and roll my eyes thinking, oh here we go again, another Retin-A prescription lol), and to be honest i think that they can give us the most basic of advice but sometimes they dont know everything. They can give advice but after they give us the prescription for acne medication whether its BCP pills etc, thats only 10%. the rest of 'getting better' comes from our side, we are the ones who know ourselves best and must look at how to improve our conditions whether its hormonally related through diet, exercise and lifestyle changes, or with our skin care regimes. We are the only ones who can help ourselves. Its true what green gables said, we often look to doctors as gods with all the answers, but the real answers come from within and from self research. I mean, i have learnt a lot more about pcos and acne from my nutritional guides to managing the conditions and on the internet than a dermatologists office. Sometimes, the trip to the doctor ends up making the condition worse, and it over complicates things. I think if we find the right medication for us, whether its is hormonal/pharmaceutical/herbal and our own balance in life, then things sort themselves out. I generally try to stay away from the doctors now. I have seen 3 different dermatologists within the same clinic/hospital i go to and you would not believe the differences of opinion on things and the feedback they gave me.  I still see one of them and trust her, she is extremely honest.

Yup I agree with you. Why has no one done the studies? Why do women endlessly get prescribed birth control pills only to have problems? Because we're still being active consumers and providing the industry with demand. We're not speaking up about problems and just complacently and blindly trying the next treatment, the next birth control. Look at all these experiences of women and acne coming off the pill - no doctor will tell you this is a problem. No one is even thinking to research this. With how scientifically advanced we are, it really is a disappointment.

Yep...a lot of "no one knows." At least he was honest with you.

 

It's not gender discrimination. Women patients aren't standing up for themselves. When I go into a doctor I basically go in like a man. I'm there for a purpose and I'm not leaving until my needs are satisfied. I see all these women tiptoeing around doctors, not asking questions, just wanting a "magic fix", treating doctors like god, etc.

 

So if most of your women patients are happy with Accutane or the latest birth control pill, practicing doctors have no motivation to do otherwise...and no one has any idea that this is a research need, because we aren't expressing the need.

[LillyRose7]

i didn't have all the symptoms of pcos, but most of them. For eg i was slightly overweight but didn't have a lot of weight around my abs, which is indicative or a symptom of pcos and insulin resistant. You can be thin and have pcos. I had some facial hair, on my face (which i have laser treatments to and respond to) and chin (disappeared). I take metformin and belara. I think the more you read on the internet, the more confused you get because of the differing opinions and studies. There are many treatments for pcos, metformin really helped in terms of weight and 'hairiness' and regulating my periods but it didn't help with the 'imbalance' or hormones (even though i was regular, i was a mess in the second half of my cycle with moodiness and acne) so i took BCP now. Belara so far is ok, not much to say in terms of negative stuff, i have the normal side effects like a headache here and there and spotting but nothing major. No weight gain (pleaseeeeee god no weight gain!) and i feel more balanced on it and less moody. Skin is good, some small spots here and there. Broke out in a cyst on my chin the other day but i think this was because i had fillers put in by my derm to fill in a hole caused by a cortisone injection (fat atrophy, i'm soooooo upset by it lol) and she had to really go around the hole. Otherwise i feel ok on it . Mom said skin looks more matte. I asked my doc when my skin will have nice affects she said not before 6 weeks :'''''''''( . Will be patient.

[LillyRose7]

http://www.docguide....e-and-seborrhea

[LoveGreenSmoothies]

I don't understand his answers to the estrogen and progesterone levels. We're they measured in labs? Just because you had a baby doesn't mean they haven't changed since then. If he measured them in labs and they were okay then it makes more sense but I don't know why you'd ask?

[michi31]

I don't understand either because your placenta starts producing progesterone when you're pregnant so its not really measure of what it is normally. My progesterone was so low in the beginning it was miracle i didnt have a miscarriage. They also had a hard time getting my estrogen off the ground even with all the ivf meds i was taking..however i think my baseline day 3 estradiol was normal. We hadn't tested for e and p but he agreed to add it to the labs when i get retested in a couple months.

[LoveGreenSmoothies]

You need to get them tested again to see whats going on.

[michi31]

Yes i had my hormones tested over a year ago and then a couple.months ago with identical results. I'm getting tested again in April at which point i will have been on Spiro for 3 months.

[LoveGreenSmoothies]

That's good. You also may have normal results but still have acne. That happened to me. My endo said once the receptors are sensitized they remain that way even if your levels have gone back to normal.

[michi31]

Yes my endo said we don't know what is happening in the skin. Enzymes that convert testosterone to dht could be overactive so we get acne despite normal amounts. He said it would be a genetic fluke for the actual receptor to be sensitized and that this is a figure of speech for overactive enzymes. I hope that's true because i hope there is a sufficient amount of testosterone in my skin for Spiro to bind with...there certainly isn't in my blood.