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update after seeing new endo
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update after seeing new endo

i can't remember where my original post on this was---but i wanted to tell you what i found out when i finally heard back from the new endo.  after reading through my medical records, he feels that my AI was caused by the cortisone shots i got in my heels two years ago.  so, i am to stay on 20 mgs of hydrocortisone for 6 more weeks---and then i will see him again.  hopefully he will be weaning me down a little more on the meds at that time.  the nurse even talked like he might eventually take me off of the thyroid meds since he isn't sure i was hypo to begin with.  the first endo dignosed me as hypo because i was on teh low end of normal----and had symptoms of fatigue and pain.   i think the fatigue and pain are from my fibromyalgia----especially since increasing my thyroid didn't make any difference.  the doc won't do anything with my thyroid meds until they have finished working with teh hydrocortisone, though, so as not to get any confusion from what might cause any symptoms if i don't feel right during this process.      i am hoping that this all works.  i would love to have one or two less meds to take and not have to worry about going into adrenal shock!      i had been considering getting steroid shots in my knees because they bhurt me so much---but i'm not goping there again.    the one thing i have noticed since lowering my hydrocortisone, though, is that my atopic dermatitis has flared back up on my hands-----but i can live with that.  my hands have itched for over 40 years and i've had rashes for almost as long as i can remember.  i only treat them when they get painful.
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Did the doc run a stim test?
It is possible that the shots did cause an issue (I have heard it go both ways - AI or Cushing's) but you need to be sure that your adrenals are in shape to go completely off - aka you need a stim test. You don't want to go into crisis.

Are there other treatments for your hands?

There is no stim test for thyroid...  I just hope you do well on a lower dose.

Pain is a huge issue.
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he didn't run a stim test---he didn't want to do anything until he had read through all of my medical records.  i'm guessing he will probably lower me a little more when i see him rather than take me completely off of the meds.  i'll be sure to ask him if he will be running a stim test before he gets to the point of taking me completely off of meds.

my original thyroid test had been at the low end of normal.  my orthoped thought it was too low----i was about to have carpal tunnel surgery done.  i think he wanted to be sure that my thyroid had nothing to do with my thyroid. (or my B12--which tested high).  the first endo i saw put me on thyroid meds because i was so fatigued and had constant pain.  i guess she was assuming my thyroid levels were low enough to cause it---but nothing ever improved when she raised the levels----except that between the psychiatrist office making m hypothyroid and then raising my meds high enough to push me into hyper symptoms.  i had been off of thyroid medication for a year before i saw the first endo.  before that, my thyroid had been shut down on purpose for 10 years because of multiple thyroid nodules----a treatment that seems to be somewhat outdated, i guess.

the new endo isn't even going to mess with my thyroid medication until they have worked out the adrenal issues----they don't want any confusion as to what might be causing what.

i'm guessing that he will probably take me off of armour eventually, though and then follow through with testing to make sure everything is normal.   i have a little more confidence in this guy than i did in the last endo i saw.  i like the fact that he wanted to look everything over before he decided on any course of action---and that he didn't run a whole lot of blood tests yet-----especially since i don't have insurance until october!!    i kind of wish he had tested my thyroid, though, since my last test had showed elevated T3 and i had hyper symptoms----and i had lowered the dose to half.  however, a  year or so ago when i was on this dose lower of thyroid, my levels were in the normal range.   i think the reason he decided to leave my thyroid meds alone for now is because a higher dose had not made any difference in my pain levels or my fatigue.

i think that the pain and fatigue are from my fibromyalgia.  i'm hoping to get tested for lyme disease here pretty soon.  i was bit by a tick years ago, but i didn't know that it could become a chronic condition----so i never really thought that i could have lyme disease----then i learned that i have a whole bunch of the symptoms of chronic lyme and that you could have been bit years back and not really show symptoms until later-----and i've actually had a lot of more minor symptoms for years and years.  

we have a clinic fairly close that tests for lyme---and the doc there believes that all fibro is lyme---don't know if that is true, but i figure it can't hurt to get tested.  they test your blood and look for the bacteria itself instead of looking for the antibodies.

sorry about the book.
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Wow. I hope your docs figure it out as you have a lot going on. Lyme is nasty so you have to really stay on top of that.
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forgot to tell you about my hands---the steroid cream i use is a pretty strong one--but i don't think i use it often enough for it to cause me any issues.  i have had rashes on my body for so many years that i am so used to them---i usually let them go until/unless they get really painful or if they are on my face.  if they are on my face they usually give me something that is not quite as strong.  i had it on my eyelids last year and it only took using it for a little while and the rashes cleared up and didn't come back.   i have tried several other steroid creams and they just don't work as well.  i think if i was using it on a daily basis that it could cause me problems, though.

if they get really bad on my hands i usually don't use the meds unless i get get cracks across my joints---those can get painful, so i will use the meds to get them cleared up.

i had several years where i had rashes right in the crease below the bum cheeks--probably more info than you wanted---but i was kind of afraid of public toilets during that time!!LOL!   once i got those rashes cleared up they never came back again.   they seem to migrate around my body, pick a spot, and then hang around for awhile---but i almost always have them on my hands.   when i was in grade school i was covered from wrist to just above the crease in my elbow with almost a solid rash.    i often scratch myself until the skin comes off.       i missed the two different ages that people usually outgrow this--if they are going to outgrow it.  so, i am one of the lucky 2% that have it for the rest of my life.

it's funny, i'm so used to it that i hardly think anything about it---but my son has something really similar on one or two of his fingers----and he just freaks out about it.  it will sometimes make your fingernail deformed if there is a really bad rash on your finger---and he is afraid people will think it is really gross or something.  my fingernails are slightly ridged and sometimes get funny bumps---but i'm not a nail person---i play the piano, so i can't have long nails, anyway,

i'm not very sympathetic if my kids tell me that something itches because i have had such severe itching my whole life and scratched off so much of my skin---some mom, huh?
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Do me a favor... search for or read the insert on the cream and look at the side effects. A lot of them will give you clues like easy bruising, moon face, weight gain, poor immune system and stuff that tells you that the steroid is very well absorbed via skin and can cause issues. I know I had to use something on my face (every year for my birthday my FIL gave me flowers and every year I had a TERRIBLE allergic reaction to them on my face so I had all those creams on my face and lids too... it was so so so much fun until we finally just told him please please no more!)

The rashes were something I got a lot when I had Cushing's and eased up more when I had that go away... but I was so itchy all the time too!

My nails are like ridgey paper... horrible. I keep them short as I am learning piano as an adult - a sure way to hear a lot of swearing in the house LOL... I am only up to the third book. It feels like forever.

Let's see - epsom salts, benydrl, other OTC anti-histamines etc. I tried it all - the derms all gave up on me.
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were most of your rashes allergic reactions?   i have atopic dermatitis----they call it the "itch that rashes".  they told me i got it because my dad had asthma and my mother had hay fever.  i was tested for all kinds of allergies when i waqs about 8---but i wasn't allergic to anything.  oveer time i have developed some environmental allergies, but nothing that causes me too much trouble---but i have become pretty chemical sensitive since i was pregnant with my 16 year old.

i'll have to wait unjtil i get a new tube of cream before i can read the insert----and that could be a while----i guess i could look it up on line, though.
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I got some allergic reactions (the dermatologist tested me recently and I reacted to all the patches AND the tape - so she told me I had angry back syndrome HUH?) and some that just show up for no reason or rather a reason that is not apparent to me.
I never had allergies before but now it seems like I get allergies all the time.
I do what I can to avoid but whatever... I know I will be at the doctor soon.
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angry back syndrome??!!LOL!!  that sounds like a name that interprets in to "we haven't a clue what causes it."  if i wear a bandaide too long i will get a rash sometimes---the fabric stretchy kind aren't as much of a problem.  but, since i end up having to change the bandaides so often because they get wet, etc.  it usually isn't a problem anyway.       my 16 year old was really rashy as a young child---when she got older, the rashes went away---but she also turned out to be one of the one's with celiac disease.   one of my twins also had rashes that looked alot like ring worm--so i took her in, but it turned outto be something called numular exema (eczema).  however, she had really bad rashes on her ankles and her knees and her elbows and her bum-----a pretty good clue for it being dermatitis herpetiformis--which is the skin manifestation of celiac disease---which she also has.  all celiacs do not get DH, but everyone with DH is a celiac.  i'm not sure that the dermatologist we saw once realized that.  i think he knew gluten caused the rash, but i got the impression he didn't know that if you had the rash that you also had celiac disease---even if you didn't have any other symptoms.

it is frustrating when you know more than your doctor does!!  sometimes i think it irritates them if you know something they don't and if you are well informed---but sometimes, i think a good doctor is impressed that you would do the research to learn about your conditions.

the skin cream i use is called betamethasone valerate.  i remember my obgyn didn't want me to use it while i was pregnant---but i told him i had used it with my other pregnancies---and he kind of shrugged and let me go ahead and use it.  the endocrinologist  indicated that it was one of the stronger cortisone creams and that if i was using it alot that it could  possibly cause adrenal problems.  i don't think i have ever used it on enough of my body for long enough periods of time for it to be a problem-----except when i was a kid.  they used to have me put it all over my arms and then wrap them in plastic wrap---and they had me put it on my hands and then wear cotton gloves covered with plastic gloves.  they  had me do this when i went to bed at night.  since then, i have read that you are not supposed to put occlusive bandages over this kind of medication.  wonder how much i was absorbing into my system back in those days??!!

i think we can get allergies any time in our life---i wonder what it is that causes them when you haven't had them before.  with my kids, i think that if they don't stay gluten free they can get other food sensitivities---and other autoimmune diseases.
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    "Acne; cracking and stinging of the skin; dryness; excessive hair growth; inflamed hair follicles; itching; skin irritation."
Acne, hair growth are Cushing's symptoms...

The foam has more listed:
"Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); acne-like rash; burning, cracking, irritation, or peeling not present before you began using Betamethasone Valerate Foam; excessive hair  growth; inflamed hair follicles; inflammation around the mouth; muscle weakness; thinning, softening, or discoloration of the skin; unusual weight gain, especially in the face."

Acne, hair, muscle weakned, thinning skin, weight gain and moon face is Cushing's... so yeah - it is a powerful med.

But what do I know - I just have an angry back...

I don't have celiac but I have the gene for it... I do have the thing where if you *write* on me, it shows up as a rash... my derm loves that...
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i got that thing where i could write on my skin once---can't remember what it's called.  my twins were pretty little and still nursing and everywhere their little fingers would scratch my tummy, it would welt up.  i could scratch a word onto the skin of my arm and the letters would raise.  i would get huge hives all over--like quarter and half dollar size sometimes.  it came on suddenly one night.  the doc gave me some sort of med to take---but it didn't make any difference, so i didn't keep taking it.  it lasted for about 6 weeks and then just disappeared.  my twins just recently turned 20 years old and it has never happened again to me in all those years.    there was a potato field near us and i think that they had just recently sprayed the field to kill the vines---i've always wondered if it had something to do with that.
anyway---it was kind of fun to write on my skin and have the words appear magically!LOL!!!

i've never heard of the foam form of valisone (brand name, but shorter to write)  there is a cream and an ointment.  i can't stand the feel of ointment, so i use the cream.  i don't seem to have any of the side effects after using the cream----i actually have alot of the symptoms before i use the cream.   i've tried a number of different steroid creams over the years and none of them has worked as well as the valisone.   i always seem to have a little acne---but that is regarless of whether or not i am using the cream.

i'm impressed that you are learning to play the piano as an adult---maybe it is the angry back that makes you swear!!LOL!!   i swear when i sew.  of course, i find a few other times when i use that particular vice.  one of my twins is at a church college and she informed me that she told her room mates that she learned to swear from her mother!!  i laughed pretty hard about that one and asked her if she told them that it was only hell and damn.  i have played the piano since i was 11---i'm 48 now.  i remember skipping lessons because my hands hurt so bad from my rashes.  bandaides help alot when they hurt.  i think keeping the cracks covered and not exposed to air helps----i'm sure glad i don't have angry skin from bandaides or i'd be in real trouble!!

i get to do the music with the kids at church on sunday and i want to bring my guitar---i'm hoping my hands are going to co-operate.

i've been meaning to ask you.  do you think it would matter if i were to stay on 20 mgs of hydrocortisone until october and cancel my endo appt.  we already have so many medical bills and i don't really want to get anymore.  we are refinancing our house and will pay off about half of our medical bills.  we are getting insurance on oct. 1.  i'd like to wait until then to go back to the endo.  the first appt. with him was over $300 dollars--plus the ultra sound---$565 total!!!  i guess i just have to call and explain the situation to them and hope they'll go along with it.
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i meant to ask you if you have ever had a total IgA serum and a Ttg IgA test done?  with all you have going on, i wonder if you could have celiac disease.  since i know that i carry one of the main genes i periodically have a Ttg run when i am having other blood work done just to make sure that the disease hasn't activated in me.  it is a good idea to do that if you know you carry one of the genes.
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Dermographism! I looked it up. They made me take antihistimines for a while but I just wanted to eliminate any pill I don't have to take.

I have had the celiac tests done - they were negative. I do have the gene - I had the test done and I have the HLA-DQA1 gene so I am at increased risk. So I guess I should check from time to time.

I used to sew - I had a cat that pulled my pins out as fast as I put them in! Do you ever use eucerin cream (not lotion) for the cracks? It really helps - when my skin is dry - it helps.

I always wanted to learn how to play a musical instrument - but yeah, it is humbling when the 8 year olds are playing so much better than you.

I cannot advise you on medications - I am not a doctor... I would call the office and explain the situation to them and ask them. You can also ask them for a cash price. They price the office visits for insurance yet from insurance they get like $50 - so ask if you can pay what insurance pays not the full cash price. Negotiate!
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i'm not familiar with the HLA-DQA1 gene.   the only genes i was aware of that were defrinitely connected to celiac were HLA-DQ2 and HLA-DQ8.  is the A1 gene an alele of one of those two?  actually, i think that those two are aleles of a gene and not the whole gene itself.  i remember trying to read up on genes and aleles and try to make some sence out of it---it about fried my brain!!!!    we were part of a celiac study that was done by the university of california, irvine.  the gal told me that they knew that there were more genes involved, but that they didn't know what they were.  i think she said that they had about 8 people in the study that were biopsy proven celiacs that did not have either DQ2 or DQ8.      the majority of people with celiac have DQ2--about 97%  the rest have DQ8.

once you reach a certain point with the piano you should just fly because you are older.  i started piano in the 5th grade and i had a niece that started in the 1st grade.  when she was in 10th grade she was playing one of the same songs i had played in the 10th grade----which made me think that even though i had started at 11 and she had started at 6---i probably moved along faster because i was a little older-----plus, i REALLY wanted to learn to play.  there were 11 girls in my family and i am the only piano player.  alot of them took lessons, but they don't play much, if at all, now.

so how old are you---i'm thinking your pretty near my age---i turned 48 in feb.
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about the eucerine---i have used it at different times--but i don't like how greasy it feels.   the doctor had us use it on my husband after he had set himself on fire.  while they were doing debridment (SP?) the used the silvadine cream, but when he was done they told him to put eucerine on it.  walmart has it's own brand that is the same stuff---but cheaper.  i'm glad you mentioned it since my hand are hurting so much i might go ahead and use it for a little while and see if i can stop my hands from cracking.     i get these tiny little fluid filled bubbles that really itch--which of course i scratch, then i end up tearing my skin off, things get raw---then they crack.  sometimes they just get dry and crack.   really, what i have right now is nothing compared to what i have had in the past----it's just that it has been awhile since i've had much of anything.

i have devised a lot of unique ways to scratch my skin over the years to get relief---which is hard to come by.  it always amazes me when my husband has an itch he asks me to scratch and it takes so little to relieve it for him.
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We are the same age. I just copied the gene from the testing I have - I know nothing except it said I had a 2x higher chance with that gene. Joy!

My brain does not work so I am still struggling with piano... just the dang notes.  I hope to fly some day.

Weird about the cream - I find the lotion so greasy but the cream fine. It has to soak in though. Debridement - ugh! Funny I used it after my hubby used it after PT after running his hand through a table saw... men!
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my arthritis has gone nuts since they lowered my hydrocortisone.  i had made the connection to the skin rashes when it was lowered--but it took me awhile to figure out that it was probably causing the arthritis to flare.  i got a call from the endo's office yesterday and she said the doc confirmed it was probably the dropping of the dosage causing the arthritis to flare--but he still wants me to drop my hydrocortisone to 15 mgs in 4 weeks---unless my arthritis has not improved.  if it hasn't, i am supposed to call them.  the big toe joint on both feet hurts--but the right foot is especially bad---but it gave me trouble years ago.  it really hasn't been much of a problem until they lowered my meds---and nothing seems to do much to help it---oh well, hopefully this too will pass away.  i go tomorrow to get tested for lyme disease.

i told my husband that i am going over to the dark side because i am going to be tested by a chiropractor/naturepath----i've never put much stock in these kind of docs unless i needed a back or neck adjustment--but this guy also has training in microbiology.  they test the blood and look for the actual bacteria instead of doing the ELISA antibody tests that are so unreliable for lyme.  i've decided that since the medical community hasn't been able to do much for my pain--i'm finally willing to consider something else.
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Ah yes ye olde anti-inflammatory effects will get ya every time... ***** to hurt.

Hope you don't have lyme - that is a bad one.
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i saw my blood under the microscope yesterday.  my red blood cells were stacked together in long bands--i don't think they are supposed to be that way.  they tell me that indicates that i am really tired. you could see little parasites moving around--unless your blood has little yellow things that can move around between the red blood cells.  you could see that some red blood cells had white centers---i think that meant there was actually a parasite inside the blood cell.  you could see big yellowish clumps of yeast in my blood and there was one really big L-shaped thing that the gal said was either a parasite or that it had held a bunch of parasites in it.

there was one red blood cell that was all jagged looking and moving slightly--she said that it was being eaten by a parasite and was about half gone.   there was also this slightly greenish sheen that covered a large area.  they said it was a biofilm.  lyme spirochetes can take a cyst form and then they cover themselves with a biofilm that makes them more or less untouchable by antibiotics.

the doc also looked at dried red blood cells and could tell me that i was really malnourished---my diet is horrible---but so much of the time i am too exhausted to fix a decent meal so i eat the easiest thing i can come up with.

i am on some supplements, and they wanted to do a vitamin IV to give me a jump start--but we didn't have time---so i'll have to do it at another time.

my blood cells are too clumped together for the doc to even get a good look at things to even look for the lyme spirochetes--but the gal i was with has seen plenty of blood work and told me she is almost positive i haave lyme disease.
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Have you seen normal blood? Just so you know what you are looking at when you compare...
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