addison's help

[Leigh1234]

Hi everyone,

I am new to this forum. I'm a 29 year old female recently diagnosed with adrenal insufficiency, hypothyroidism, possible hypoparathyroidism, chronic pancreatitis and malabsorption, anemia (don't know if it's pernicious or iron-deficiency yet), and possible atrophic gastritis. Don't know about ovary function yet, either. Apparently this is an Autoimmune Polyglandular Syndrome. All of these diagnoses have been made in retrospect. I had been incapacitated for a few years, undiagnosed, and really thought it was the end for me.

I'm really confused about some of my results and am hoping someone here might be able to help me. During my ACTH stim tests, my aldosterone was low several times, and plasma renin was high. My understanding is that these findings are consistent with primary AD. I also had electrolyte imbalances indicative of primary, too (high K, low Na, etc). My pituitary has been imaged and is normal. However, my ACTH was NEVER high. It was always within normal range, and at one point was even low. How can that be? Does ACTH have to be high w/primary AD?

Also, although my doctors are assuming this is autoimmune (I have an enlarged thymus), I have no antibodies to thyroid or adrenals, or even celiac antibodies for that matter. However, I am allergic to gluten and 40 other foods. Any ideas? Immunodeficiency runs in my generation of my father's family and Hashimoto's is prevalent on my mom's side.

I am having to take monster doses of steroids - anywhere from 60mgs-100mgs of Hydrocortisone a day (and I only weigh 95 lbs). The assumption is that because of my malabsorption issues, I do not absorb medicine normally. I have no symptoms of steroid overdose yet, and it's been 4 months of treatment now. Should I be worried about long-term effects from these drugs? I am only taking .05-0.1mg of Florinef per day, and 88mcgs of Synthroid.

I know there are some smarties on this forum :) Any ideas or information would be greatly and truly appreciated. Just trying to understand what's wrong with me. Please help!

Thanks in advance.

[rumpled]

I never understood why steroids are used for weakness when... they cause weakness (cushing's, steroid myopathy) and so I refuse them. Some of the doctors still blame my weakness half on MG, half on the steroids, but eh, my steroid level has been normal now for 3 years so it is hard to blame myopathy now - that should be gone in a couple of years. But they use steroids to treat MG - so er, huh!?

I hope you can wean down a feel better...

As for s*&(t. Ah, well, the family joke is that I am getting rid of all organs/glands that I are not necessary and now even a few that are (like my adrenals) but somehow manage to hold on to my tonsils, appendix and gall bladder.

I hope you can keep your Ca up!

[Leigh1234]

Good grief. You sure have been through a s*#t-load of stuff.

Antibodies are so weird. Doesn't what affects the thyroid also affect the eyes (tissue-specific or something)? So it must be hanging around in other places, too...

I haven't noticed any change in my Ca since supplementing - it's normal now, which is a relief, but always on the very lowest end. I guess that's o.k.

Had a traumatic emotional event this weekend and needed to come up on my HC - I had been weaning down and thought there was less weakness. As soon as I came back up, it came back big time. So I'm hoping it's just related to the steroids and isn't early MG. Hard to tell, because apparently steroids can exacerbate MG - who's to say what's what.

Anyway, thanks again. Hope you're hanging in...

[rumpled]

I have proximal weakness - shoulders, thighs. I was weak when I was cushingoid (forget taking a bath or squatting) but post BLA, I got even weaker on much less cortisol. Even as I reduce my dose, I get weaker. In fact, I have to run away from doctors who want to do nothing but increase my steroids as well, heck, that is the standard treatment and since mestinon made me twitch and choke, and I refuse steroids and IVIG almost made me die (asceptic menigitis and pancytopenia), my options are getting smaller.

My Ca is always in the low side, so I have to take Ca nightly and drink lots of milk.

I still have Hashimoto's antibodies - and my thyroid was entirely removed 5 years ago... go figure. I wonder what that is attacking or if my thyroid tissue is still around. Other than that, pretty much all my tests come back ok.

[Leigh1234]

Hmm.

I was just reading some posts on the UK Addison's forum, and so many people mention this weakness "from the ears to the elbows". A lot of them say it's improved after they were able to lower their HC doses...do you know if a "Cushing's-like state" causes weakness specific to one area of the body like that? Did the weakness you mention here begin before or after the surgery for your Cushing's?

There's lots of talk on that forum about MG, too. One person mentioned limiting magnesium intake. I remember one time last year, when I didn't know what was going on, I took a Ca/Mg supplement...the night that followed was one of the worst of my life. I'm sure I was already hypercalcemic and didn't know it, and who knows where my Mg was...anyway, would never take it again after that.

I'd been wondering if antibodies would go away after a while. I've read conflicting info about that...It seems kind of weird for me not to have ANY of them...but this stuff has been going on for years, so maybe they've disappeared. Do you have any antibodies anymore?

[rumpled]

22 is fine - 10 is the bottom of the range... I have been eeking over it...

Funny you mention the shoulders, my first indication that I was in trouble was that one shoulder froze, that another (idiopathic, that should be my middle name) and 3 years later, I still do not have full mobility back or strength, when I used to be pretty strong. My weakness seems to be more pronounced in the top half of my body, but walking has to be limited to around 20 minutes or the next day, I will pay dearly. Standing is painful almost immediately. No reasons can be found.

I have a bit of ANA and that is about it so I guess I have been sick so long that my autoimmune stuff is just not going to show up in the tests anymore.

[Leigh1234]

I know what you mean - Low sodium makes me feel shaky and sick, but there's really nothing quite like the feeling of low Ca...absolutely bizarre, like being on another planet.

22 is ok, right? Didn't mean to make you jealous ;)

As far as the thymus goes, I do have weakness/burning that happens at the same time every day (late afternoon/evening). It's always my shoulders, neck, top of my back. It's definitely made worse by repetitive movement and subsides with rest. I'm hoping it might just be from this whopper HC dose (just began tapering today toward a more standard replacement amount). But I have problems with my right eye, too. Exophoria and anasocoria that are both intermittent. So MG is on my mind, of course.

Like you, I am negative for antibodies for MG, but I've been negative for every antibody so far...adrenal, thyroid, celiac, you name it. My docs still insist all of this is autoimmune. After all this time, though, and mention of cancer and everything else, I need some sort of confirmation. Hence the rheumy appointment...hope he can shed some light. I'm wondering if the thymus just needs to come out. Probably creating more trouble than it's worth...

[rumpled]

My phos and PTH also jump around - I just try to keep up with it and know that when I feel wonky, to take a salt tablet with milk and hope I covered all bases... maybe? My serum Ca stay low normal, but my urine cal is high. Whatever.

Oooh 55! I just managed a 22... I am jealous... I was scraping by at 10.1 for my PTH forever. I have no idea why it goes up and down but I only have one parathyroid left due to surgery and I think it is ready to give up the ghost soon...

With the thymus - do you have myasthenia gravis type symptoms? That is my next round of testing... I have issues swallowing, walking, stamina etc. so I have an MG diagnosis but I am sero-negative (naturally, I am being difficult case here, too).

[Leigh1234]

Thanks yet again, Rumpled! You're a veritable gold mine of information!   :)

I met w/my endo today. My Ca and D are finally in (low) range, and PTH is 55...kind of strange and unexpected, but o.k. with me. So, as of now, no hypoparathyroidism. He didn't check Phos but will in 2 weeks when he re-runs everything. My B12 is in low range now, too...maybe that means no atrophic gastritis, just food allergies, and the anemia can be attributed to hypothyroid/Addison's.

He didn't really know what to make of the high Phos all those times, except my Ca was all over the place...high during crisis times, which gave me pancreatitis, so it dropped really low, and I guess nothing was regulated anyway because of the Vit. D. Makes sense in a weird way.

I'm meeting w/a Rheumy in a couple of weeks about my huge thymus and this stupid pain in my neck (literal and figurative). No one seems to know what it is...

Thanks again for all the info. It means the world to me. Hope your PTH "keeps it up", as it were! Your "mineral statue" comment cracked me up.... :)

[rumpled]

It was calcium levels, serum, ioniized and 24 hour urine (fun, not)
phosphates
PTH
D (both 1,25 and the other, I am forgetting - but the short and the storage)
electrolytes...
I get so many tests done normally that I think that covers it.

I take D and calcium citrate and drink a boatload of milk, eat yogurt, etc. We joke that my diet is all salt and calcium. I may become a mineral statue one day...

My PTH is now jumping - it was low low low - 5.5 for the longest, now oddly it is working its way up a bit... but I do not trust it to stay.

I am not sure about the phos/d connection... but when I was low on D, my phos was high, my cal did hang in (maybe due to my diet) but that could be me - and I am strange and weird, even according to my doctors. I do not drink sodas so why my phos went high was a  mystery.

[Leigh1234]

One more question for you, Rumpled, if you don't mind...

How was your hypoparathyroidism diagnosed? I ask because whether or not I actually have it remains an enigma. I've had hypercalcemia with each Addison's crisis of course, but otherwise my Ca is always either on the very low end of normal or just low. At times it has been as low as 6.5. I've had severe Vitamin D deficiency/insufficiency 3 times in the last year, which has resolved each time with prescription D but then relapsed.

I've been taking 1,000-2,000mgs Vit D/day and at least 1200mgs Calcium Citrate, and since doing so have been able to keep things regulated. But I am confused about my Phosphate, which has been high every time it's been checked.

My understanding is that Vitamin D deficiency, though it can cause hypocalcemia, should not affect Phosphate levels. Is this true?

Thanks for your insight :)

[Leigh1234]

Very interesting. Which hormones (if you don't mind me asking) affected your parotids?

I'll inquire with this new endo about cytomel, too. He seems willing to work with me so far, so we'll see what happens...

Just found out I need to have my gall bladder removed, and this will be the first surgery since beginning treatment. I'm a little tentative at the moment, but keep telling myself that for some reason I lived through crisis after crisis and at least a few years of being undiagnosed/treated, surgical complications, etc. So this should just be a little bump in the road, right?

Aside from stress doses of IV hydro, do you have any suggestions for pre-op or post-op care?

Thanks again for everything!!!

[rumpled]

Parotids can just swell... I don't have sjogren's but I get tested since I get stones in mine and I am a bit dry, but that is due to my hormones.

Ah... yes... I have had a lot of problems with endos too...

Armour is good - my only caveat being that the ratio of T3 to T4 being higher than what most people need, so if you get heart palps or the like, you may need to add a bit of T4 to it, or I have a doc that gives me a T4/T3 combo using cytomel so it is more controlled.

Potassium and sodium are very related - so you have to watch them both - but if you spike high, just concentrate on the sodium, and the K should take care of itself, but it does not sound like you are keeping enough of the Na - which is a florinef issue, not a HC issue.

My CRP did not come down until after my Cushing's was controlled.

I try to help others - I don't want anyone to be like me. I ended up losing my career over this and nearly my life.

[Leigh1234]

Thanks so much, Rumpled. This is great info and very comforting for me. I'd been thinking that I needed at least more salt, if not more Florinef, and maybe extra potassium. I did have high potassium levels a few times when things got really bad (along with low sodium and high calcium, etc), but otherwise, it's always on the bottom of normal, if not low. I didn't know that happened to other people as well. Hard to find too much good info on this stuff, since there aren't many of us.

I was actually admitted to and discharged from Hopkins and UMD several times without a diagnosis, even when I arrived at their ERs in flat-out Addison's crises and almost died. So I'd travel a million miles before ever going back to either one of those places, unfortunately. Sounds like we're in the same boat with that kind of stuff.

I just started seeing a new endo who seems experienced and prescribes Armour, which I'd like to try eventually (after getting on a better dose of Synthroid). I do think it's time for another thyroid ultrasound and will push for one.

Thanks for your advice on seeing a rheumatologist, too. That's a great idea. Apparently one of my parotid glands may be swollen, so Sjogren's is up for consideration...we'll see.

My aldosterone was really low on several occassions, and renin was high at those times. ACTH was all over the place, never high though. So you used to have high CRP too? I'm thinking mine was from a combo of the adrenal insufficiency and food allergies...it's come down with treatment and an elimination diet. I guess yours has regulated, too.

Thanks again for posting. I really appreciate your help. It's really great of you have gone through so much and still "pay it forward", as they say. Hope you're doing well.

[rumpled]

I take 2000mg of salt a day in the form of tablets, and then liberally salt my food, in order to keep my BP up - so I know what you mean. You may be one of those that may need both salt and potassium. The classic addison's crisis is that sodium goes down and potassium goes up, but there are a few of us where both go down. I am one as well. When I feel like crud, I drink V-8 as it has lots of K in it.

I suggest that you find a better endo - one that will ultrasound your neck and give you more thyroid, moderate your steroids (it will destroy your bones in the long run) so you sound like you need more support from the other hormones to get going. Thyroid nodules do not have to be so big to cause issues.

If you are in MD, have you gone to Hopkins? I am in NJ. But to be frank, I travel to the other side of PA to a doctor that is good - it is well, hard to find a good one. I had to go to LA for diagnosis and most of my surgeries as well. Sad.

Have you had your aldosterone and renin tested? CRP is showing you have a lot of inflammation. I used to have high levels... thyroid levels should not be based on weight that I know of.. you are undertreated.

[Leigh1234]

Hi Rumpled.

Thanks for your reply. I've seen some of your other posts and they're always really informative. I appreciate you mentioning specimen handling of ACTH, etc. I never considered this, but am wondering now if that's why my ACTH was never as high as I expected to see it (my skin was tan before I began treatment).

I actually started on a higher Florinef dose, but my Potassium got low and I felt really bad - my endo at the time chalked it up to too much Florinef and lowered it. I seem to be o.k. with this, and if I crave salt, I eat it. So far my BP has been o.k. Just have to be careful when it's hot out.

I saw a Rheumy only one time. My ANA has always been normal, sed rates fluctuated but were always normal. My C-reactive protein was astronomically high a few times before treatment, especially with high fevers. My eosinophils were really high, too. I've just been attributing all of that to the Addison's. What do you think?

I take 30mgs hydro in the morning, 20 in the middle of the day, and 10 in the evening.

Not sure why my Synthroid dose is so low - maybe just because it's based on weight (I think the standard dose is 0.7mcgs/lb). I'm a small person. I still have my thyroid but something in my neck is absolutely killing me - hurts so bad on the right side, radiates everywhere. The right lobe of my thyroid is much larger than the left, but I can't find a doctor who thinks it's big enough to cause these symptoms...at a loss with that right now.

I don't know how to find a neuro-endo...it's been a nightmare finding good doctors. May I ask what state you're in? I'm in MD.

Thanks again for your thoughts. Any other ideas would be greatly appreciated. I know you're helping lots of people on this forum.

[rumpled]

Is your endo a neuro-endo?
You may need more florinef. You may also need salt.  How is your blood pressure?
Have you seen a rheumy for ana, sed etc?
You are taking a hefty dose - how are you dividing it up?

ACTH would normally be higher, but it does not have to be as your pituitary is working and the feedback loop is in place.

Why only .88 of thyroid - do you still have your thyroid?