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Addison's

beth01

By beth01
in Related Issues & Disorders

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beth01 Enthusiast
beth01
Posted

I was wondering if there is anyone on here who has Addison's along with Celiac? I have been having a very bad week and Addison's was brought up and I am being sent to see an endo to be tested for it. I have every symptom but the hyperpigmentation. I don't know much about the disease except for what I have read the last day, so I am interested to see if anyone else has more information or experience. Thanks.

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icelandgirl Proficient
icelandgirl
Posted

I don't know much about it but wanted to send you (((hugs))) and positive thoughts. I hope that you get some answers and that you feel better soon.

nvsmom Community Regular
nvsmom
Posted

I had one doctor who suspected low adrenal function and started treating my for it before testing me for Addison's (dummy).  He started me on fludricortisone for the postural hypotension, and hydrocortisone since I was on the low side of normal and my testosterone was a bit low too.  I sort of wish he hadn't treated me at all because it is really tough to get off steroids and I did not like the side effects, like pre-diabetes.  

 

Do the testing before treating would be my advice.  Steroids are not something to be used lightly.

 

Good luck.  I hope it turns out okay for you.

beth01 Enthusiast
beth01
Posted
  • Author

Thanks you guys. I know Addison's is very rare and I probably don't have it and I'm trying not to freak out but it's hard. I know it's a very manageable disease but a potentially very scary one. My cortisol is a little on the low side of normal but still normal. The soonest they can get me in is December 23rd so my doctor is seeing if she can get me fast tracked in. I am so glad I have her. She openly admitted to me that with the Grave's and Celiac, what's going on now is out of her spectrum. My old doctor probably would have tried to figure it out himself and I would suffer even more. All of my symptoms can either be attributed to either Celiac or Grave's. My TSH is 16, but it was 32 months ago and I didn't feel like this. I have been getting full body muscle spasm/cramps for 4 days now. My shoulder muscles are staying contracted which is causing a horrendous amount of pain. They have me on muscle relaxers, valium, and vicodin and it isn't doing s$#&. I haven't had any stomach involvement except for some nausea so I don't think I got glutened. I'm usually hanging my head in a bucket when I get glutened. I haven't changed any foods or meds, haven't been any where out of my home to eat. My blood pressure has been pretty low lately, generally about 80/50 and that was before all the meds. We are keeping a pretty close eye on it. The only place I have hyperpigmentation is on my scars, but I also don't get a lot of sun, I get nasty rashes if I'm in the sun so I avoid it like the plague. The one symptom that gets me, is the salt craving. My go to foods when I don't feel well has always been salty foods, but lately I am compelled to eat salty foods, almost like an addiction. My sodium is on the low side but they didn't do a urine sodium so they can't correlate the two. They said wait until I see the Endo. I sure hope they can get me in sooner, I can't feel like this much longer. You would think I would be tired from all the meds, but I can't sleep from the pain. No where is comfortable, I spend most of the day pacing. Sorry, I'm whining. And it's funny because I just posted a week ago how much better I was feeling. I jinxed it.

icelandgirl Proficient
icelandgirl
Posted

That sounds bad Beth. I'm so sorry you are going through this. One thing I've done to speed up my appointments is calling regularly to see if they've had any cancelations. I recently had an appointment that was 6 weeks out but got it moved up 3 weeks with calling. Maybe try that?

And what were you thinking sharing your good news! I feel the same. I'd been having a good run recently...told 2 people...wanted to share good...and then have had a rough past week. What's up with that? We should be able to enjoy and share our successes without something bad coming along and slapping us in the face!

Hang in there...I will be thinking of you, hoping you get some help quickly.

cyclinglady Grand Master
cyclinglady
Posted

Your TSH is 16? I assume that if this was not a typo, that you got an increase in thyroid replacement?

nvsmom Community Regular
nvsmom
Posted

I was quite nervous about the addison's too. It's a bit of a scary one.  Your symptoms do sound a LOT like mine did.  I too have celiac and Hashis (I've never swung hyper) as well as one other AI disease. I get muscle cramps (legs) but I also get back spasms that get so tight that I am completely crooked to the side and forward no matter what drugs I tried (accupuncture sometimes helped). Could yours be a back thing?

 

I also had low BP but mine was a bit higher at 90/50.  I never have salt cravings but my urine sodium is high (above normal range) and my serum sodium is at the very low end of normal.

 

I just mention this because I was a similar case and it turned out okay - no addison's.  Try not to worry... I know it is much easier said than done!  LOL In the meantime, document your worries and make sure you know what tests should be done for addison's so you are well educated on the topic when you see the endo.

 

And ditto Cyclinglady, I hope your low thyroid function is being treated. Best wishes.

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GF Lover Rising Star
GF Lover
Posted

Hi Beth,  Try not to worry about Addison's unless you get a diagnosis.  You may be low in potassium/sodium which will effect your muscles.  If you crave salt, eat it and lots of water to help your muscles.  You will most likely get a blood test for ACTH, potassium/sodium levels and cortisol level.  These tests will determine whether the pituitary is involved along with the adrenal glands.  

 

My husband has had Addison's for over 30 years and it is managed with lifelong medications and is monitored much like the thyroid with regluar blood work to check levels.  There are added concerns with Addison's but can still be managed to some degree.  

 

Let us know how the tests turn out.  If I can answer any other questions you might have, just ask away.

 

Colleen

beth01 Enthusiast
beth01
Posted
  • Author

Yes, I'm being treated for the high TSH. My levels have been all over the place the last year it seems. I think this last blimp is due to the fact that my previous doctor messed with my dosage when he shouldn't have. I took in a list of concerns when I went to the doctor on Monday, even a list of my blood pressures from the last week or so. When I go to the doctor my BP is through the roof, I almost had a panic attack on Monday and would have had I not been on Valium already. I haven't been able to take all the pills they gave me since my BP were dropping a little lower than I am comfortable with at home, and I haven't found the right blend that actually keeps me either comfortable or tolerable to the pain. My doctor messaged me last night to let me know that she spoke with the Endo and based on my chart she feels I can wait until December to be seen but she suggested testing in the mean time. I'm not sure just what or when but I pretty sure she will get back to me today. She has already called me twice this week and messaged three times. Either she's a really awesome doctor and cares for her patients of the hospital is scared lol. Quite the change from the last doctor.

beth01 Enthusiast
beth01
Posted
  • Author

I received a call from Mayo in Rochester today and I'm going to be seen there next Tuesday. I wasn't going to make an appointment there but I got to thinking it might be nice to be seen by someone with a fresh perspective that doesn't personally know my previous doctor and see him on a daily basis. Just have to take it one day at a time. I had to quit with the pain killers, they are making me too constipated and that is one road I don't feel like journeying right now. Stinks when you would rather be in pain than constipated.

GottaSki Mentor
GottaSki
Posted

Good Luck Beth. Make sure to ask..if not addisons or other things discussed...What could it be? Always ask questions that make them think.

Hang in there and if addisons stays in the mix...Colleen is your advocate.

icelandgirl Proficient
icelandgirl
Posted

I'm so happy for you that you will get seen next week!  Best wishes and please update us when you know something!!

SMRI Collaborator
SMRI
Posted

I received a call from Mayo in Rochester today and I'm going to be seen there next Tuesday. I wasn't going to make an appointment there but I got to thinking it might be nice to be seen by someone with a fresh perspective that doesn't personally know my previous doctor and see him on a daily basis. Just have to take it one day at a time. I had to quit with the pain killers, they are making me too constipated and that is one road I don't feel like journeying right now. Stinks when you would rather be in pain than constipated.

That is probably a good plan.  The coordination of care there is just outstanding so they will look at the whole picture vs just a symptom here and there.  Our last visit we stayed at the Brentwood Inn.  It's connected to Mayo by their underground tunnel system. Very easy and handy!!

beth01 Enthusiast
beth01
Posted
  • Author

That is probably a good plan.  The coordination of care there is just outstanding so they will look at the whole picture vs just a symptom here and there.  Our last visit we stayed at the Brentwood Inn.  It's connected to Mayo by their underground tunnel system. Very easy and handy!!

Thanks, we are only an hour and a half away so we are going to drive up and come back. Unless they want me there for more than one day, then my boyfriend's cousin lives in town. I have been there before, I had a mass wrapped around my around my aorta that I had removed at St. Mary's about 4 years ago. Luckily, I am seen by a branch of Mayo here in town so I don't have to have all my medical records with me, they are all on their computers.

icelandgirl Proficient
icelandgirl
Posted

Hey Beth...wondering how things went at Mayo. I hope you got some answers and are feeling better.

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