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Addison's Disease Message Board

Addison's Disease Board Index

Hello everyone,
I am a 24 year old girl who has been diagnosed with Addisons disease recently. I am a medical student, so I have self diagnosed this for myself since the doctors were no help for a long time. The doctors ignored it till I became extremely weAk and fatigued. I got my tests done and my cortisol levels were suppressed, so I have primary adrenal insufficiency. I started taking cortef, twice a day. I am also a Hashimotos thyroiditis patient for about 6 years now. I have noticed extreme dark patches on my stomach and on my forehead that grew and took over my entire stomach and cheeks. I have always had extremely good skin. It is not the tan that bothers me, it is the dark blotchy patches. Can you guys tell me if this will go away? My acth is high, hence the conversion to the MSH. But, did any of you guys actually have this tan go away? It is a very nasty blotchy hyper-pigmentation and I have tried everything for this to go away, but it has not. Also, after I took my acth stim test, my body looked even darker after the next two days, and it still is. My pressure points of the blood tests are not bruised but just plain dark patch. So, my question is, will the blotchy patches from two years due to addisons go away? Is it reversible? If so, how long would it take? If it won't go away, how are you guys getting through with this?
Please help.
Can someone please answer this question? I am just feeling really awful and now I look awful as well. I just want to know if this is permanent.
Hi I have secondary Addisons and dont have the sketchy skin sorry. One thing poo ugh I've been on 15 mg of hydrocortisone for about 2 yrs and my endorsement says its cause my a1c to go up! Its not my pancreas. Spoke with my son he said then can't you come off the hydrocortisone it has made me gain and have puffy face. So im weaning off hoping to wake up my glands. Cathy
A few things first:

1. Who is prescribing you medication if you've self-diagnosed? If you have true Addison's, you'll need more than Cortef, usually. The reason I ask is that you need to get your ACTH down. It'll be more difficult to treat if you don't have your hormones balanced.

2. I have hyperpigmentation called melasma (chloasma), but it's caused by other hormonal issues. It's usually caused by the use of oral contraceptives or pregnancy. Although, now that I'm being investigated for Addison's, I'm wondering if the two aren't connected. Mine is localized to my face, which is a bit darker than my neck and chest, and it's patchy in some areas. It used to be really bad, but I've managed to control it enough so that it is easily covered with makeup and there's a good chance I'll get rid of it altogether. So here are some tips:

1. Make sunblock your new best friend. Wear it religiously and be sure to reapply every two hours. The higher SPF, the better. I'd say 45 and above is best. It's imperative that you get used to that. Only 20 to 30 minutes in the sun unprotected will really set you back in your progress because those areas of your skin are hyperactive--they'll tan much quicker than the rest of your skin.

I use Neutrogena Ultra Sheer liquid broad spectrum SPF 70 on my face every day. It comes in a small 1.4 fl oz bottle (don't worry, it's plenty) and is thin enough to wear under makeup. I used to wear their Pure & Free version of it, which doesn't contain too many creepy chemicals, but for some reason it was giving me loads of whiteheads. That's probably just me, though. It'll probably leave a bit of a layer of shine on it (or white, zinc oxide if you use the Pure & Free), but I usually just wait for it to settle into my skin for a good five minutes and then gently wipe a little of that layer off. I've not had any problems in effectiveness doing that.

You could also use a good BB cream. Korean brands are good, but I found it tough to find a color fair enough for my skin. eBay sellers have samples they sell for cheap, if you want to try them out. Just don't buy them from sellers in Hong Kong, China or Thailand. South Korea should be safe though. You'll be able to find a BB cream with a high SPF, which makes it much easier to reapply your sunblock if you wear makeup.

You can use anything else on the rest of your body, though keep the SPF high. I like to use the Pure & Free line from Neutrogena, because it doesn't have that sunblock smell. But it will leave a white coating on the skin, so if your skin is darker, you'll see it. I happen to be quite fair now that I've stopped tanning, so it's not a big deal for me. But I'm sure there are other brands that don't smell too chemical-like.

I don't know if you tan or not or what race you are, but learn to embrace your fairer skin. I used to tan all the time and totally regret it. I'm now 35 and wish I'd never tanned. I've worn sunblock religiously for over 5 years now and I'm so happy that I have. While I don't have a lovely tan, I have smooth skin and absolutely no wrinkles. I usually get pegged for ten years younger. All of my friends of similar age, and even some younger, have wrinkles. If people only really knew how bad the sun was for their skin, I think fewer people would tan.

2. Wear hats. This is similar to sunblock. I started wearing hats and now I'm really used to them. There's more than baseball caps out there--I'll also wear ivy caps and fedoras, which are really fun and add a bit of style to whatever you're wearing.

3. Sake (pronounced sah-keh, not sah-kee). Sake (Japanese rice wine) can be used topically to help with hyperpigmentation. It has to be Japanese rice wine--it can't be Chinese. The reason for this is that the key to its skin lightening power is the kojic acid, which is derived from koji--a type of fungus, and which happens to be the fermenting agent in sake. Kojic acid is great for lightening dark spots, and is used in various cosmetics for that purpose. The problem is that when kojic acid is isolated and used in cosmetics, it becomes really unstable, which is why most of those products will be kept in opaque containers.

But this isn't an issue with sake because the kojic acid is in its natural state--yet it's just as effective, if not more so. It's also quite safe, so you can use it every day as much as you want--unlike dangerous skin lighteners like hydroquinone. I actually now use it as my skin toner. I love it. I also heard that SKII (that crazy expensive skin cream) claims that their secret ingredient was derived of sake, which they discovered was good for your skin when they saw the young looking hands of an old sake maker. I thought, "Why not just use sake?" Oh, right--you can't charge $200 for that.

I use it just like skin toner: just put it on a cotton ball and rub it on clean skin. I tend to make it a little more damp than toner though so that there'll be more to soak into my skin, and then let it dry before I put on my lotion. I use it twice per day on my face, and spray it once per day on my arms and chest, where my skin gets the most sun. You could pop it in a spray bottle and use it on your abdomen, or anywhere else for that matter.

You can use any brand, really, but go for high quality. I would also email the maker and ask about the pH of the one you want to use. The closer to your skin pH, the better. I use organic junmai sake, by Hakutsuru. It comes in a large green bottle and costs about $14. Don't worry about the alcohol smell--it goes away when it dries.

**Please note that any topical skin lighteners will only work for hyperpigmentation in the epidermis. Hormonal hyperpigmentation occurs in both the dermis and epidermis. This is why things like lasers are not an option. But the sake will help a lot, I think. You'll probably notice a difference in the epidermal hyperpigmentation in about three weeks after using the sake twice per day.

4. Other than that, I'm trying a few other things but it'll be a while before I can say whether or not they're effective. I'm in the middle of dermarolling treatments, which may help with the deeper layers of skin. I'm doing them at home, once every 6 to 8 weeks. I'll do it a total of 5 times. I use a 0.75 roller. It looks barbaric, but it's not bad. It just takes time.

When I finish that, I'll do 5 or 6 microdermabrasion treatments. That will only work for superficial hyperpigmentation though.

I hope this helps. I know it can be so disheartening. Hormonal hyperpigmentation is a beast. The key is to treat the underlying cause (in this case your ACTH levels) in combination with topical treatment and prevention.

Good luck!
Yes, I have got it diagnosed since I went into adrenal crisis. So, the doctor put me on hydrocortisone 10mcg in the morning, 5 mcg in the afternoon. My dhea level was normal and other hormones were fine. I have no menstrual issues. I do not use any OCP's or hormonal products, so I do not have melasma. I do have hyperpigmentation due to the increased acth, which in turn changes to MSH (melanocytes). I was wondering if that is reversible? Since, this is not an epidermal hyperpigmentation, I do not think kojic acid would help since I have used it for three months already.
THank you so much for your replies. I really appreciate it.
Noevr, Addison's patients have very low blood-glucose levels, so hydrocortisone will make your blood-sugar levels rise. It is the hypoglycemia that causes the adrenal crisis. So, it is good that HbA1C is increasing, but it should not increase to a point where your pancreas and your B-islets are shut down. That has to be autoimmune again and not due to the medicines. But, yes, HC does increase your blood glucose levels.
I didn't mean to say you have melasma, I only meant to point out that they are similar in nature. They're both caused by hormonal imbalances that stimulate melanin production as opposed to outright sun damage or aging. Most of the time, hormonal hyperpigmentation is reversible, but only once your ACTH levels go back to normal. Until then, you're merely treating the surface causes, and it will be an uphill battle.

All hormonally-caused hyperpigmentation on the skin has both dermal and epidermal hyperpigmentation. I'm sure you're using a product with kojic acid in it, but sake will be more effective due to its pure and concentrated (yet safe) amount. I've used other products with kojic acid with less luck than I've had with sake.

In addition, if you're not wearing sunblock, everything you're doing will be useless. Some Addisonian hyperpigmentation (such as that in mucosal membranes or fingernails) has nothing to with the sun. But skin hyperpigmentation does. Not all of it is internal. They even say that some Addison's patients who regularly use sunblock may not have hyperpigmentation. All melanin reacts to UV radiation. So if the hyperpigmented areas of your skin are exposed to the sun, it will be hyper-reactive to UV radiation. Using sunblock in combination with a skin lightener like kojic acid should help lighten any epidermal hyperpigmentation. When your ACTH levels go back to normal, then the dermal pigmentation should slowly leave. You could also potentially help it along with dermarolling, which will reach your dermis, but I wouldn't do it until your hormone levels become normal again.
Hi hun ive had addisons since i was 18 and unfortunately the blotchy pigmentation is part of addidons I too have some quite dark patches of skin and while they faded a little with time they havent gone completely. Im sorry I cover mine with a good concealer because im quite self conscious about it so sorry hun i know its really quite a difficult issue to deal withbutfeel free to message me if you want to ask any other questions. The only other thing I could suggest is getting your cortisol levels checked every few months as mine had to be upped a few times. Hope this a little x
I was diagnosed with Addisons' Disease just this past Christmas Eve, I too have dark patches on my skin, especially my feet, are darker than the rest of my body, I have big white patches on my stomach, n a dark patch around my lip line, and am getting dark patches around my chin that look like bruising.. From what my Endo can tell me, they will not fade nor disappear.. I have had Addisons' for over 12 months but was recently diagnosed, I got Addisons' from being pregnant, no matter how sick I was, doctors kept tell me I had postnatal depression, even though I was telling them I didn't. I got down to 43kgs no matter what I did, I couldn't put on any weight. I then got gastro which turned into an Addisonian Crisis (didn't know at that point) and I almost died twice..

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