Newly diagnosed--- so many questions!

[Scyllabelle]

Hi all. I have recently been diagnosed with AI.  I had the STIM (?) test to confirm this diagnosis. I do not have Addisons. My salt and potassium levels are normal. I do not have a pituitary or thyroid problem. I do not have a condition that led to this. When I asked my endo "how" and "why". This is how he explained it:  my adrenals do produce some cortisol...... Just not enough to sustain life. He does not know why it happened. It just did. I try to think of it like diabetes-- science doesnt know why pancreas doesnt work, it just doesnt.  I am on 30 mg HC--- 20 in morning and 10 around 5.  Next week I will stop the 10 at 5 and see how that goes.  Oh, and I have low b12--- weekly injections now. And low vitamin d-- 2000 mg daily.
So, here are my questions for those of you who have been dealing with this longer than I:
-- Will I ever get back to my old self? Feel"normal"?
-- Will this roller coaster ride ever stop?  I have noticed I will have 3 days of energy (I won't feel 100% but I can go and do) and then it's like a crash. Just unable to go. Need lots of sleep.

--- I have read lots of info on "symptoms". We all seem to feel the same. But I get this feeling of tingling in my upper arms and cheeks or face when I am on what I call a crash. Anyone else have this?

[rumpled]

So keep a supply of pickles handy - and also think about buying salt tablets for when you are on the road and cannot get to your salty food supply!

If you feel better during the day you can start to sleep better - the xanax can only be a temporary thing as it is addictive as all heck. But the sleep is good. I am using melatonin to sleep.

[Scyllabelle]

Hi. To day is a much better day!  I took some of the advice and divided my hydro doses. Instead of taking 20 mg every morning like my Rx states.......I decided to try 10 at 6:30, 5 at 10:30 and 5 at 2:30. This is the most alert I have been at 6 in the evening in a long while!

No testing of ACTH. I have had all kinds of T test, the IGF, prolactin--- from what I have read these tests were to check pituitary, hypothalamus . and thyroid function. They all came back normal.

The only abnormalities have been with B12, VitD, and cortisol. I feel like because I am not vomiting my guts up, losing drastic weight, running fever etc.--- that I am. To perceived to be in crises mode so......non emergency.

I am trying to adjust to this good day bad day, good hour bad hour, life I have developed. I have read and read and read!  I believe I have learned more from other patients on how to handle certain situations. For example, Saturday by 1:00, I was still feeling weak, fatigued, just not alive. I had read somewhere to eat a pickle for the sodium. I did.  And what do you know......it's like I "woke up!"

I have realized that you can not explain this to anyone..... Not even a dr. It's like pregnancy and having a baby--- you can describe what it's like being pregnant, being in labor...... But a male obgyn really doesn't understand, truly know the experience. He can monitor you, help you..... But only other women who have given birth can give you candid advice.

As far as more meds..... My PCP has me on an antibiotic for ear infection and gave me Xanax to help me sleep. I have no trouble going to bed at 9-10. But around 3-4 am my body wakes up. I mean really wakes up! Excited and ready to go!  I took the Xanax the past 2 nights and slept soundly with no wake ups from 10-5!  Very happy about that!

[rumpled]

I would hunt around for a new endo... if you have AI, pretty much everything is related - hence why your PCP called - and you may need more meds, more testing for 'lytes etc.

Hormones work in loops - so the more complete thing, for at least a while, at least for diagnosis - is to test the loop of the pituitary and the glands so you can determine source. It is not perfect, but it can give the doc a better idea of what is going on and where. So never testing ACTH (which they may not want to do as it is a fussy, frozen test) just seems odd - you could have pituitary source, and other pituitary issues too. Treatment is the same, but still, you like to know.

Did they discuss adding florinef or other medications to help you?

[Scyllabelle]

Hi.  Thank you for reaching out. Today has been a rough day and I feel like I am crazy and alone!

My dr did not do the ACTH test. He said he did not not that he did not feel like he needed to--- whatever that means. The week i went to endo for first time, they told me they had a patient earlier that week present in full crises--- vomiting, lost 30 lbs etc. I think when I presented with no weight loss or vomiting, just complaining of fatigue and achy, they didn't believe anything was happening with adrenals. I think they did STIM test as a courtesy to my primary care bc they did lab work to show low cortisol.

Today I went to primary are doctor bc of just not feeling well. They checked my ears and I have an ear infection--- been battling this since October!  This is the reason they decided to run cortisol test in the first place--- constantly getting sick. I told her every symptom as I have learned not to hold anything back. She gave me a b12 and an antibiotic shot and told me to call endo. I did call endo. Spoke with nurse who went to speak with dr. They brushed off symptoms and said that they were not AI related. That I was just probably more aware of things with my body since I had been diagnosed. Huh?  Really? Idk..... Maybe I have made myself crazy!

Here are the "symptoms" I have been having. Someone please let me know if this is "normal" with AI or if I am acting crazy!

* I take 20 mg of hydro every morning around 7. I do get a worn down feeling in afternoons--- I rest, sometimes a short nap sometimes not. I go to bed every night around 10. Sometime between 3-4 every morning my body wakes up. Can not go back to sleep. Starting to feel the effects of sleep deprivation.

* my tongue hurts--- feels like I ate or drank something hot and scorched it.

* I have sticky sweating ski at night

* I alternate between being hot like a hot flash and cold with chills under a blanket

* headaches and sore stiff neck-- not every day

* red patchy look on palm of hand--- fatty part under pinky finger but lower like in line with thumb

* some morning-- this morning-- when I wake up at 3-4 I have like this shaky excited feeling. Like restless arms and my head bobs/twitches.

* I scare easily. If I'm Ina quiet room and some one says my name I jump out of my skin. If a dog barks....loud noise just sends me into a state of fear.

If you, or anyone has any ideas, please share!  I am just so tired of this!  Today I am just so tired, mad, depressed. Just frustrated!  

[mohrae]

Did your endocrinologist perform an ATCH test? Not every person with Addison's disease has problems with their salt and potassium. Some people just can't produce enough cortisol.

[rumpled]

The tan can vary - it can be spotting or a general tan - or both! I used to never tan, now I tan and have horrid spots on my face and hands. I look like an old lady.

I was technically not really diagnosed... I had Cushing's disease - the pituitary form of too much cortisol caused by a pituitary tumor. I had the tumor removed (as well as a second, a prolactinoma) and the Cushing's tumor grew back almost immediately. After some testing, it was decided that my best course of cure was to remove the adrenals instead of more pituitary surgery. So my AI happened in one day. I have really really high ACTH though as my pit tumor has gone crazy so while a normal AI person will hit maybe 600 or so - mine is near 4000.

I learned from others - it helped me - so I figure if I help others, then can in turn help others etc.

[Scyllabelle]

Wow!  You are very knowledgable!!!  Everything you have said is right!

All the blood test started when I started feeling "better".  So much better that I called and cancelled an endo appt--- told the receptionist I was better, that it was just my b12 bringing me down. Needless to say, I got a call from the doctors nurse within 48 hours to let me know that I was not "better" and that the doctor needed to see me.  

I am not sure about ACTH testing--- I have noticed I am missing papers on some test he did. I will ask for them on next visit.

As far as tanning...... Is it all over?  I am of Irish descent so I have always been fair but lately-- maybe a year or so--- I have noticed I'm more golden all the time. And i tan real easy where i use to burn  Periodically I get brown splotches on my face--- been chalking that up to age and just applying makeup.

Let me see if I understand--- the drs keep checking electrolytes because they will plummet right before a bad crash?  This way they are on top of it and can "fix" the balance so you don't end up in hospital?

You know so much about this!  How long ago were you diagnosed?  I was so hesitant posting on a forum like this but so glad I did!

[rumpled]

When you test you are probably feeling ok?

If your cortisol/adrenals are not working - sometimes ACTH will try to work harder, and you may get tan. I have a tumor aka ACTH tan.

Did the doc run adrenal antibodies? You could have auto-immune issues with your adrenals - have true Addison's.

Your 'lytes should only plummet when you are sick. My doc runs the same panels too.

[Scyllabelle]

Thank you for all your advice!  I am just trying to accept and understand what has happened. Some days nothing makes sense!  

I have gotten copies of every test run on me and analyzed all the results. That is why I'm baffled--- my sodium and potassium stay in normal range with each test (which seems odd with all that I have read on AI). I chalk it up to the fact I live in South Georgia where salt is a staple with every meal! Haha Or maybe the medicine they have me on for bladder incontinence helps me maintain an electrolyte balance-- I don't know.

I am going to ask for some Zofran for the nausea. I get frequent nausea but I don't vomit. One dr told me I have a very strong stomach by being able to suppress the vomiting. Once again I laugh it off and say it is because I was pregnant four times-- I learned how to control morning sickness haha.

I am very pleased with my endo and he has answered all my questions on why I don't fit the typical profile of someone with AI. Bottom line...... I produce ACTH, aldosterone, and the pituitary, hypothalamus, and thyroid are doing what they are suppose to do. For some reason-- unknown to the medical community-- my adrenal gland does not produce adequate amounts of cortisol when stimulated to do so. To wrap my brain around it, I think of a diabetic patient-- their pancreas just stopped the insulin process and need insulin to live...... I need steroids.

Here is my question....... I have noticed my endo keeps rechecking the same blood panel. It is pretty obvious to me he is evaluating and reevaluating my electrolytes. This makes me think he is watching and waiting for them to plummet. Will that happen?  Does AI progress and become worse over time? I can't help but wonder if I am gonna get worse.

[rumpled]

Without ranges, can't really tell if your cortisol, sodium and potassium are on the low ends of the ranges... I am assuming yes. So no ACTH test at all?

As a fellow patient/sufferer... I have to agree with getting a medic alert bracelet with *Adrenal Insufficient - needs corticosteroids" (an aside, "steroid" can cover a lot of things like testosterone, even vitamin d!, so it is best to be very specific on the replacement you need as sadly people just don't know).

I have a recent post on an emergency kit... so while the hospital call is great, sometimes things happen in places where you are not near one, or they happen fast - so YOU NEED AN EMERGENCY INJECTION to carry yourself. I also suggest you get one doc to give you either zofran or phenergan (generic ok) to stop or prevent vomiting and carry that too.

I also carry salt tablets to raise my BP. A crisis is (and that is the whole vomiting thing) basically caused when sodium drops - so you have to make sure that when you start to feel wonky - eat ramen, pickles, potato chips, bouillion soup, olives or whatever you can find and eat/drink that is salty. So next time your BP is low - salt salt salt. Your routine diet should include more salt as well. It may happen that you need another medication called fludrocortisone aka florinef to hold sodium and it helps too.

The cigs constricts your blood vessels - the salt will help balance the whole 'lyte mess and raise your BP.

Read up in the health pages to the right on stress dosing, crisis, etc. It is part art, part science - and you have to learn your new body. Just keep up fluids, rest, salt etc. and you will feel better.

[Scyllabelle]

Hello. Thank you for responding. Lets see..... Where do I begin..... Ten years ago I had a partial hysterectomy (kept ovaries).  Since then I have ups and downs of periods where I just didn't feel right. I just felt something was off. I have been sick off and on and diagnosed with IBS, diverticulitis, tested for celiac, had numerous scans etc.  I have gone to gynecologist asking to have hormones checked thinking it was menopaus--- always normal. I had a period that lasted one week where I stayed in bed and studderd when I talked--- dr said it was stress and put me on an antidepressant. It's just been crazy!  
Anyway, in April of 2012, I go back to gynecologist and tell him once again I think I am going thru menopause or something. Test run.... Nope, not menopause. I spent the next 6 months telling friends and family how tired I am--- to which I would hear how everyone is tired so I just shook it off and pushed myself but everyday around 2ish,I would just want to fall out!
Then in October 2012, the illnesses started--- bronchitis, ear infections, migraine headaches that sent me to hospital,flu...... Just sick all the time!  It was like every other week or so I would get something else and start a new round of antibiotics. Then in March of 2013, I had had enough! I went to primary care doctor sick again and said --- that is it! Something is not right!  No one should be on antibiotics for 6 months off and on!  I came clean with all my symptoms-- I was not completely honest with dr. before because I thought I was going crazy! I am 43 and I was having memory problems, dementia like episodes, wetting my pants......stuff I was too embarrassed to discuss. She did the initial fatigue panel on me. Results:  cortisol--3; b12---213; sodium--141; potassium--3.8. She suggested I see an endocrinologist just to cover all the bases.
April 2013, I see endo and I told him everything. He was not too concerned with my cortisol but just to make sure decided to do the stim test:  baseline-- 4 (he said that is not bad), after 30 minutes--14, after 60 minutes-- 15.  He also tested for Lyme-- negative. Glucose--84, sodium-- 140, potassium--4,A1C--5.2 and vitamin D-- 27 (low, he said that should be around 50). He diagnosed adrenal insufficiency based on my stim-- he said numbers needed to be above 20 in reaction to ACTH. Started me on HC. Two weeks with dosing of 30 mg and then on week 3 cut out afternoon dose and just take 20 in morning. He wants to test my electrolytes every 3 months when I see him. Told me to call him when I get sick. Go to hospital if I get a virus that causes vomiting. Get an ID bracelet that says "steroid dependent". Etc. Oh, and forgot to tell you about BP. I am a pack a day cigarette smoker and my BP with white coat syndrome after a cig is 100/70. If I go without a cig for a while my BP drops low-- lowest I recorded was 78/56.

[rumpled]

I am confused... a bit (but I am a layman).

AI is a salt wasting disease - so at some point, your sodium or potassium should be in the tank. Did you fail the stim test? Did you get a copy? Do you routinely get a copy of your testing?

You can have AI without having a thyroid or pituitary issue - that is fine.

Did you have a crisis at all - is that how you were diagnosed?

Your replacement dose is a tad higher than most people's, and your second dose is not consistent with a normal person - in that the dividing of the dose is supposed to mimic the diurnal rhythm so most take the second dose at 2-4pm, any later and most will have problems sleeping.

As for normal - you have to find a new normal. You can feel better, but it may take when your other vitamins are more normal as well.

As for the fatigue, it could be the dosing schedule is not very good - you may want to move your last dose of cortef/HC up a few hours and see if that helps.

I had my adrenals removed, so I lack adrenalin. I get a tingle at times instead of a rush of adrenalin but I know I differ from the norm.

Get copies of everything if you don't have it - if you do, read up. At some point you should have some wonky Na and K readings.