Dermatologist appointment

Fish2575 · Post by **Fish2575** » Wed Jul 11, 2012 4:29 pm

Woohoo! Thanks Tex! There are my fabulously rashy hands. This was back in 2004? I think! Look like yours?

Zizzle · Post by **Zizzle** » Wed Jul 11, 2012 9:51 pm

My knuckles aren't that red yet, mostly pink with some violet undertones, and primarily on my right hand. Strange that DM rashes are supposed to happen symmetrically. I also have very few Gottrons papules on my left hand, but both hands have the red, swollen cuticles. My worst knuckles are the same as yours- the base of the index finger and the one next to it. Did the dry papules also go away when the rash subsided? They feel kind of permanent to me.

I rode the metro home today and keenly examined every hand, elbow, chest, knee and shoulder, looking for someone like me. I only came across one possible in 30+ people. Maybe others like me are already on meds?

God, I wish I knew what to do or had a doctor with real answers or a willingness to delve deeper. Seven years of limbo and unanswered questions is killing me. I need to clear all this from my head!!

Fish2575 · Post by **Fish2575** » Wed Jul 11, 2012 11:29 pm

The less I was in the sun the more the rash faded. I wore my sun protective gloves everywhere for six years. Even when I drove the car. It is a little weird to me that the bumps are completely gone now, yet I don't remember when or how they went away. I wish I could remember more, but I hope it helps knowing that mine is gone now! It can go away.

I remember being so frustrated like you are. One of my docs said once, "Connective tissue diseases are all different manifestations of the same problem. We like to give them a name so that we have an idea of the prognosis." It is so hard to not know what is going on in your body. I hope I haven't made you more frustrated!

I do remember very clearly what happened to me after the rash appeared. You have to take into consideration that I was still eating gluten when all of this started. Let me know if you want me to tell you all of the details.

Looking back I just assumed all of the rashes were a component of the Microscopic Colitis and eating gluten. Since you got yours after a gluten free diet, that kind of throws a wrench into my theory!

Try to rest your brain from it all for a while....

Zizzle · Post by **Zizzle** » Thu Jul 12, 2012 6:29 am

Thanks, that makes me somewhat hopeful, although you won't see me wearing gloves anytime soon! Would love to know the details of what happened after the rash. I can handle it. Any muscle weakness?

Post by **tex** » Thu Jul 12, 2012 11:40 am

Fish2575 wrote:Looking back I just assumed all of the rashes were a component of the Microscopic Colitis and eating gluten. Since you got yours after a gluten free diet, that kind of throws a wrench into my theory!

All the evidence says that you are correct -- gluten is the primary cause of such skin issues, although other food sensitivities can also contribute, in some cases.

My own experience proves how difficult is it to avoid cross-contamination 100%, especially for those of us who are extremely sensitive, and I rarely eat out. I get the impression that Zizzle eats at various restaurants on an somewhat regular basis, which could certainly provide enough gluten on a somewhat regular basis to keep some of her symptoms going much of the time. Her intestines never get a chance to actually heal, because healing takes months/years. I'm just guessing, of course, but the evidence seems pretty clear associating skin issues and IBDs.

Zizzle,

Am I all wet?

Tex

Fish2575 · Post by **Fish2575** » Thu Jul 12, 2012 11:40 am

No, I think I went the Lupus route...my hands got so stiff I couldn't even almost make a fist. I mean crazy like I couldn't bend my hand any smaller than if I was holding a 2 inch diameter ball. Then my knees were next and I couldn't squat...super stiff in the morning and lots of pain. Nothing was as bad as the exhaustion though, and the diarrhea. I think it was about that time that they did the prednisone. That made everything better but it didn't go away, just never got that bad again. Chances are that since you are gf you may never get that bad! I hope anyway. I will still look for my biopsy results and we can compare....

Zizzle · Post by **Zizzle** » Thu Jul 12, 2012 2:05 pm

I get the impression that Zizzle eats at various restaurants on an somewhat regular basis, which could certainly provide enough gluten on a somewhat regular basis to keep some of her symptoms going much of the time. Her intestines never get a chance to actually heal, because healing takes months/years.

Tex, you are probably right. I suspect I get enough cross-contamination gluten to cause noticeably worse D at least once every 2 weeks, although a full-on glutening is extremely rare. But it doesn't explain why I had a 7-year gap in skin symptoms. I had a rash for 10 months after the birth of my son, and it only stopped when I stopped nursing. This rash started in January. There is no correlation with GI issues at all.

Incidentally, I had my GYN exam today. My doc (my old boss) was not very familiar with UCTD, MC, LC, or Dermatomyositis (despite being a PhD chemist and a 80+ year old doctor). He thinks "undifferentiated" diseases and lymphocytic infiltrates are just a way to scare patients, and he thinks if everyone had the tests I've had, they would all find something. I told him not everyone has diarrhea and an itchy sun-sensitive rash every day to remind them. He said I should just use cortozine creams and find out if something I'm eating is causing the diarrhea.

He was unmoved by the liklihood I had celiac. I asked if he's seeing more AI diseases among his patients and he said no. Then I said all my friends have one, especially Hashimoto's Thyroiditis. He said, "Oh Hashimoto's is extremely common!" I answered, "it's an AI disease, and goes hand in hand with celiac disease." He was again unmoved. But he surely believed I had a case of clinical hypothyroidism based on my low pulse, low BP, low libido, low temp, and always feeling cold. He has thyroid problems too. Although my TSH has tested in range over the years, I think the values are in the 3s, and he said for my age, it should be under 2. So he ordered another TSH, plus a free T3 and T4. He suggested I take a small dose of thyroid replacement anyway, because it won't hurt, it can only make me feel better. Can that be? Anyway, he didn't prescribe anything yet, so we'll wait for the results.

Then he told me to calm down, use my steroid cream, and stop thinking about this stuff...that I can make myself sick from worrying about it. Well, I was on a vacation from worry and doctors when the rash first appeared, so I don't think I willed it on myself.

He did do a thorough cancer check as requested by the dermatologist, even ordering a CA-125 and HER-2 screen for ovarian cancer. I declined a pelvic ultrasound. I highly doubt ovarian cancer at my age.

But the truth is, he's right, I'm not in any pain. I feel pretty good overall. I don't feel sick. I just need to stop this itching!!!!!!!!!!!

Fish2575 · Post by **Fish2575** » Thu Jul 12, 2012 2:57 pm

But he surely believed I had a case of clinical hypothyroidism based on my low pulse, low BP, low libido, low temp, and always feeling cold

Not sure if that quote thing will come out right, but all of my research on Histamine overload points to the same symptoms. I do have low thyroid, but not Hashimoto's surprisingly! My thyroid is kept around 2, so I am pretty sure my low pulse, low bp, etc, are not related to the thyroid. That being said, 3 is a little high for the TSH in my opinion, unless you want to be groggy and grumpy.

My other thought is hormones. (which would explain the pregnancy correlation) I think I am perimenopausal, and estrogen peaks cause significant "flare" like symptoms. Unfortunately we are at that age. I would guess either hormones, stress, or a virus triggered the rash. Could have been a Glutening, but my bet is on the hormones. There is significant research about how estrogen increases histamine.

[/quote]

Post by **tex** » Thu Jul 12, 2012 3:05 pm

Zizzle wrote:I had a rash for 10 months after the birth of my son, and it only stopped when I stopped nursing.

Whoa! That sounds as though it may be due to hormonal changes.

Zizzle wrote:He suggested I take a small dose of thyroid replacement anyway, because it won't hurt, it can only make me feel better. Can that be?

As far as I'm aware, that's correct. The thyroid will simply produce less thyroxine, if less is needed.

Tex

Zizzle · Post by **Zizzle** » Thu Jul 12, 2012 3:15 pm

The thyroid will simply produce less thyroxine, if less is needed.

That's exactly what he said. I trust him on thyroid issues, because he's been treating himself for years. He's also found the fountain of youth, because he hasn't aged a bit in the 16 years I've known him, and he's probably in his late 80's and still delivering babies and doing surgery! He's thin as a rail and has always said he eats nothing but salads, including for breakfast!

Post by **tex** » Thu Jul 12, 2012 3:17 pm

Fish2575 wrote:My thyroid is kept around 2, so I am pretty sure my low pulse, low bp, etc, are not related to the thyroid

TSH doesn't really mean much by itself. My TSH has always been in mid-range (until recently), but my Free T4 is almost always below range. Lately, my TSH has declined and is now below range, but so is my Free T4. My heart rate is also too low for my age, and my BP is declining (when it should be increasing), which suggests to me undertreated hypothyroidism.

Because of the low TSH, I tried reducing my thyroid supplement but that just increased my air hunger problem. So now I have doubled my supplement dose (Armour), and I feel better. Suddenly, my long-standing balance issue has disappeared -- my balance seems to be back to normal, now.

IMO, the adoption of TSH testing was fine, but when most doctors began relying on it as the final word in thyroid function, that's when the treatment of hypothyroidism headed south. I would like to see such heavy reliance on TSH values either abandoned, or replaced on something more reliable. TSH testing works fine for normal people, but for many of us who are hypothyroid, the numbers are corrupt.

Tex

Zizzle · Post by **Zizzle** » Thu Jul 12, 2012 3:19 pm

Tex, please excuse the gyn talk...

The other thing I told him, which I'm sot sure has any clinical significance to my hormones, is that I spot for 3 days before my period starts in earnest. Then the period finally arrives for a very heavy day, then very little for a day or 2. I think the "breakthrough" spotting may be a sign of something hormonal, although my period is very regular. My mother reached menopause in her 50's, so I'm hoping for a similar timeframe! I should have asked for an FSH/LH test. He agreed, no hormonal contraception for me, so I may seriously consider a tubal ligation.

Zizzle · Post by **Zizzle** » Thu Jul 12, 2012 3:22 pm

Tex,
He mentioned Synthroid, and that's what my friends take, but I've heard better things about Armour. It is worth asking for Armour instead?

Post by **tex** » Thu Jul 12, 2012 3:29 pm

If someone's body isn't correctly converting T4 into T3 (which is the case for some of us), then Armour is better, because it contains both T3 and T4. Most doctors don't like to prescribe Armour, because it's an old supplement, so they consider it to be obsolete, and they prefer the more modern synthetic supplements. But these days, computers are getting close to being able to replace doctors. Does that make doctors obsolete?

Tex

MBombardier · Post by **MBombardier** » Thu Jul 12, 2012 4:08 pm

Crap... and I mean that sincerely. I haven't been reading this thread because, well, we all know I have granuloma annulare, and that's the end of that story as far as dermo issues. And oh, yeah--I have a mild case of psoriasis, which I have had off and on since I was a kid, so I hardly even think about it. But I noticed that the thread is now three pages so I decided to check up on Zizzle, to see if she knew anything else about her dermo stuff, and to see if the thread had morphed.

What do I find out but that what I think is psoriasis could very well be dermatomyositis. I've had it since I was a kid, and I have the gene(s) linked to the juvenile form. Oh joy. At the moment, I have a lesion on my left elbow that may be psoriasis or may be DM. If it's DM, it may explain why I've been having some pain and weakness in my left upper arm.

What I don't understand is--I've been gluten-free except for a few minor incidences since September, 2010. So why isn't this stuff going away? I have been practically bathing my arms in hydrocortisone cream, and that has helped with the GA and with the lesion on my elbow.

Zizzle, your old boss is your gynecologist?

Actually, that's pretty funny.