Hey-- I wrote a long response and it disappeared so now I am going to give you a quick one---
What tests have you had so far? Most primary care docs can do the initial cortisol blood test to send you to an endo. Also, have you had your vitamin levels tested? I say this because low vitamin levels canals you feel like crap too! Most people with AI, also have other issues going on that produce symptoms that all mirror each other. I have AI, low B12, low D, and a crazy spine that is causing some neurological issues. Patients with full blown addisons don't seem to have all the other issues. A lot if persons with secondary AI also have pituitary or thyroid issues. So, as you can see, there isn't a one size fits all-- which makes it very difficult for us and doctors.
Have you gone to MCG in Augusta? I have been wondering it they would be a good choice for me as well.
Have I found an endo who knows the ins and outs of AI? No. But he does listen to me and run the appropriate tests. He is Dr Scott Segal in Jacksonville Florida.
All of the docs on the list from the national adrenal disease foundation are in the Atlanta area. I want to say there are 5 on the list. I can not remember any of their names but I want to say one was a female-- maybe first name Katie? Idk. I would go to Atlanta but it is such a drive for me! Being in Augusta, you are close! I would look into an endo there.
I feel for what you are going thru! We have all been there!! If you do have AI, rest assured that with the right meds at the right times-- you will start to feel much better. Will you feel just as good as you did before you got sick-- idk. Most of us do not. But, like my endo told me when I was diagnosed and I asked him "so, I will start the meds today, when will I feel normal again?" He just looked at me in deep thought in how to respond and said "you are going to have to find your new normal". That was very hard for me to stomach but-- 6 months later I get what he was saying! But that is a whole other chapter in my AI book!
Best of luck to you!! Keep me posted!!
Hi Scyllabelle, I read your posts and the others and know I have AI and have been fighting an uphill battle with doctors for years. I am so sick now, I can't even leave my house. Its especially hard with twin girls who are going to graduate this year. My mind is shot and I can hardly help them with college plans, proms, homecoming...it's like I'm missing out on their lives and they will soon be gone. I am in Augusta, GA and their are NO competent Endo's here. Were you able to find one? I will go anywhere to find a doctor who will listen and try to help me. I am so desperate, any info would be appreciated? Thanks so much! nealtwinsmom
Re chapstick - there is a post here by a doctor:
If you started to gain weight - that signals elevated cortisol (or it could be normal if you were underweight)?
My doc does not want me to stress dose that often. I use a steady dose on most days and only add when I feel ill. It is good to understand your own signs though.
Well, I'm back to my old wacky sleep pattern...... Go to sleep at midnight and up at 5! I am not rested this morning. I woke up because of sharp stomach pains and nausea. Wonderful! Just took 10 mg of HC.
My endo and PC wanted to up my dose. But they have different ideas of upping. My endo wants me to triple-- so 60 a day. And my PC says 40. Thank goodness for social media and blog spots--- I am learning how to does this!
Both docs have instructed to take 20 at a time. But I have read that if u take to high of dose-- it's a waste. Body can only use so much at a time. So, I am taking 10 when I wake up (5). 10 at 9. 10 at 1. And if needed another 5 at 4. I am listening to my body now. Noticing the signs-- we all know the signs! And if I need a little, I'm taking a little.
My labs were done at 3 in the afternoon-- states this on report. The lab included a range of what cortisol should be in the 3-5 time frame. Their range was 3-17. I don't necessarily agree with that range. The first time I had a cortisol test it was in the afternoon. I scored a 3-- which would fall in normal range. Thank goodness my PC was proactive and suggested an endo to do a STIM test that I totally failed!
I have come to understand why I just crashed last week. It's like Chapstick. If a person uses Chapstick everyday, eventually their lips will not produce moisture and they will need Chapstick. My adrenals were still producing a little cortisol when I got diagnosed. But after a few months of HC, they quit as they became dependent on the meds to do their work. So, the dose I was taking in the afternoon was no longer enough. In the beginning, when my adrenals were still producing, the afternoon HC was supplementing what they were producing. When the adrenals stopped producing......that afternoon dose could no longer be viewed as a supplement. It needed to viewed as a replacement dose and be higher. Well..... This is my explanation from my personal research---- as you know, no doctor explained this to me!
The weeks leading up to the crash were great. I had so much energy. I only needed 4-5 hours of sleep. I was so productive at work. I thought I was getting old self back! Now I think it was my adrenals having their last hoorah before ceasing. Oh, just so you know, 4-5 hours of sleep use to be my normal. I found an old journal entry from 2009 where I was talking about how I didn't need sleep to function. Looking back on it now, I think it was during this time that my adrenals started going wack. I did go to doc during this time frame because I went 4 days with no sleep. And gained about 20 lbs. knowing what I know now-- I think my adrenals were over producing during this time. Which probably led to my current state of AI-- they burned out!
I am trying to become more educated on dosing. I believe this is the key to a better quality of life. Every site I read stresses dosing. Daily dosing, stress dosing-- it's a formula I have got to learn for myself. Everyone's dosing is different. I have got to learn what my dosing should be daily and for certain situations. I also need to find a doc that specialized in the HPA axis. There are very few in the United States! But if I am not producing adequate amounts of cortisol, it has got to be playing havoc on other organs and hormones. I need more test. And I need a good doc to do them.
I think I have come a long way in the past few months since diagnosis! It is a shame that there is such limited info in AI. And even a more limited number of docs who truly understand the disease! I think of all the people out there with this diagnosis who aren't demanding patients. People who believe docs know everything and follow only their textbook advise. People who don't search for answers. People who don't research the disease. I feel for them! The lack of information, research and knowledge of this disease is mind boggling. It's not like it was just recognized-- people have been suffering from this for years. I may be a small voice in Georgia, but I am going to be a loud one! Things need change!
What time was the cortisol test? A random test is not, sadly, useful, and the range is only valid for certain times of day.
The sodium may have been nice due to taco bell. :) I tend to drop in both K (potassium) and sodium when I get low - not the normal - which is a spike in K. If I start to feel wonky, I drink v-8, tomato juice or the like (full salt, and i add salt!) and I generally can pull myself out of just something if it is say tired, sweating etc but not if I am sick, but if I am sick I still do it as it makes me feel better or at least not get worse.
40mg is a hefty dose. It is more than the normal - and the dosing *may* interfere with your sleep as your body is used to having a spike in the morning but actually looks to be lower all the rest of the day. It needs to be low at night - that is how your body recovers bone, muscles etc. and why those of us with Cushing's have or tend to have bone, muscle, eye and all sorts of cruddy issues.
You cannot simply change doses either - you have to wean down. You can always do UP but you cannot go down (unless it was one day, even then it can still hurt like heck). So you have to learn about tapering, and how you tolerate it.
I know my RBC levels get weird and I get high RBCs all the time - but so far no one cares. I know my Cushing's also messed with my platelets and they don't function well and I am a bleeder. Joy. Steroids are a double-edged sword. Proceed with caution - you sure need them but too little AND too much can bite you in the ...
There are links in the health pages in brain/pituitary tumors that may be helpful - the docs that treat Cushing's will also treat AI.
Thank you. I had blood work on Tuesday and I got the results today. My cortisol was .9 (normal range 3-17). My primary care doc has upped my dose of hydro to 20 in morning and 20 in afternoon for a total of 40mg a day.
My sodium came back at 139 (normal 135-146). And my potassium came back at 3.6 (normal 3.5-5.3). They were both in "normal" range of test but i am wondering if someone with AI should strive for higher levels. Oh, and I ate half of a cantina burrito from Taco Bell about 2 hours before blood work was done.
My glucose came back at 108-- no fasting.
I have 2 reading that come back high every time but no one seems too concerned. Hematocrit-- 47.4 (normal 35-45). And RDW 15.8 (normal 11-15). I am not sure what that is all about. I have my follow up visit next week with PC doc---- my endo is out until aug 1! Great timing! I am in search of an endo who specializes in AI or addisons. I live in South Georgia so if you know of anyone--- please let me know! I will go to Florida too! Current endo in Florida.
My grandmother had polycythemia Vera-- that is why I watch my blood levels.
I don't have adrenals - and so I take DHEA which I don't have. You may want to consider asking your doctor about a small dose. It is a precursor hormone to testosterone and estrogen.
You may also have other hormones that are low?
It can be that 20mg is just fine for normal - if you know you are about to engage in some activity be it sex, running or something else, pop a bit extra, or drink a bit of gatorade, eat something salty, etc. and see if that helps. I don't think it is on the gland, it is on the body - plus sweating can be an issue - sodium loss. So just make sure you drink after (water, not wine!) and get some sodium or something and you should do better next time.
I know weather - like the overcast stuff today - completely knocks me on my butt.
Thanks. I have a very personal question that has never been asked on this forum..........I want to ask bc I think I have figured out what throws me into my bad days.
For the most part, 20 mg daily has worked. I have felt fine. So I have been trying to figure out what activity I have done to throw my body into a tizzy. I think it is sex. In all honesty, I don't have sex often--- no sex drive and usually just want to go to bed. But...... I am starting to think the Sunday night frolic has caused this. It's like my body takes days to recover. I realized today that the last time I went into a crash was after sex.
Is this common? Is sex "stressful" on the adrenal glands? Does sex make people with AI crash? If so, do AI patients take a stress dose after sex?
If you read through the health pages, most people take around 20 - some take more, some take less. It can depend on if you have other disorders, other stresses etc. But there is NORMAL dosing and STRESS dosing.
Normal dosing = day to day is usually broken up to follow a normal diurnal rhythm if you are on HC. 20mg would be broken up to be 15 on waking, 5 mg at 2 to 4 pm no later so as not to interfere with sleep.
Stress dosing = when you are sick, feel nausea (hello!!!) have an infection, surgery, emotional news that you have a physical reaction to etc. - you have to stress dose! It may be a tiny bit like 5mg or double to triple.
You are not crazy, but your endo is not skilled in treating AI... you need salt, fluids and HC when you have nausea. You need an emergency kit, meds for nausea and guidance on how to dose.