Sorry about the hormonal mess. I can relate.
Armour has a very high ratio of T3 and low T4 so you may want to add some T4 to even it out. T3 is what the body uses - T4 is the storage to conversion type - some people don't convert that well and it looks like you convert fine.
You may also want to try dividing up your dosages more? I take a T4 and cytomel combo - cytomel 3x a day. I cannot take synthroid brand though - allergic to it.
The steroid use probably contributed to the muscle issues. I had Cushing's and it messed up mine.
Thank you for the input. I'm trying to learn how to control my sodium/potassium balance with sea salt water and occasionally a potassium loaded snack. I think a lot of the muscle weakness also comes from the electrolyte imbalance as I have extreme urinary frequency several hours each day and that's when my leg muscles become weak, arches collapse and feet hurt a lot. I'm still confused as to if that is a primary symptom or if it goes with SAI. Can you share any thoughts on that?
My DHEA is low too and I'm taking DHEA and using progesterone cream. Does low DHEA mean there is no ACTH production or is it caused from the adrenal glands not functioning in primary AI? I'm still trying to figure this all out....had it for 2 years but the endocrinologists in my state are negligent and won't treat or diagnose AI so I had to go out of state for treatment.
I use tomato juice or V-8 for salt/K boosting.
Re the urine frequency - there is a condition called diabetes insipidus. So you should get checked out for ADH issues.
AI is a salt wasting disease. So having low sodium or not holding sodium is standard and how you know you have the disease. Most people drop sodium and spike in K for a crisis - but I drop in both so it can happen. When the electrolytes drop, it can do all sorts of nasty things to you.
DHEA is not in the ACTH loop - it is in the LH/FSH loop. It becomes testosterone or estrogen. DHEA is made in the adrenals and not everyone who has SAI may or may not need it. I need it as my adrenals are gone.
It is hard to find a decent endo!
The urinary frequency is just from the AI....when I drink salt water it stops so it's just from the salt depletion. My potassium level was low too the last time they tested. I've read how sodium and potassium affect each other and how both end up being low in the end. I wish there was something I could take to stop the imbalance. Every day is different.
I have Addison disease and very very low DHEA is very common. You need your Endo to perform an ACTH STIM test. it takes several injections spread out about 30 min and then second one 60 minutes later with 24 hour urine cortisol. Addison can be tricky to diagnose and very hard to treat..I am constantly struggling with nausea off and on, severe pain,sensitivity to light,
Low blood pressure, low sodium, digestive issues, headaches, back aches, dry skin..the list goes on and on.. But I am starting to figure out my own daily cortisol rhythm ...because their is no blood work that is accurate once you are diagnosed and on medicine to determine the right steriod dose. I have to wear a medical bracelet and stress dose for illness, surgery and even exercising or when ever I use up too much energy. Here is a great website that explains more. I hope you feel better.
I fired 2 endo's....they would have let me die. A neurologist/MS specialist diagnosed my adrenal insufficiency. I was given Prednisone with an untreated thyroid condition and then given thyroid meds with low cortisol. They almost killed me. There is no doubt that I had worn out adrenal glands and the Prednisone shut down the ACTH production. The endo's in my state wouldn't do anything but 24 hour urine tests and my cortisol was low. I kept myself alive using progesterone cream when my adrenals quit....they wouldn't treat me. The neurologist recommended that I leave the state for adequate care. I'm on 25mg hydrocortisone, Armour thyroid, and DHEA and I am not bedridden anymore and can work again. I'm a long way from normal but I'm better.
There is something to take to prevent sodium and thus potassium from getting too low - fludrocortisone - aka florinef. I take it. I take it with salt and it helps me retain the salt. It is the mineralcorticorticoid component that some need.
Pred can shut down the adrenals. In some it can cause other issue as in high cortisol. 24 hour urine testing is usually for high cortisol. It can also be messed up by cortisol binding globulin - so you need serum as well as free testing. Plus averages and point in time testing - you need both. Only one type is not good enough. The stim test is the key one though.
Finding decent endos - it took me over 10 and a LOT of travel.
I traveled out of state to see a hormone doctor. I'm a thousand times better than I was and can function again. I can walk a couple of miles in the mornings but can't exercise in the afternoons because of muscle weakness. I'm trying tomatoe juice and Mediterranean sea salt water and it seems to be helping with the electrolyte imbalance. What is the criteria for being prescribed Florinef? I just had serum aldosterone checked at mayo and it was 4 - ref range <20. Is that normal? Does aldosterone have to be low to take aldosterone?
I take it for low sodium and low renin. So it can be a renin, aldosterone or sodium or potassium issue.
I find that ref range pretty ick... so zero is ok?
How do they determine if someone needs Florinef?
Low renin, low aldosterone or low sodium. Low blood pressure. Frequent crisis episodes. Basically you need to hold sodium. That is what I know - may be other criteria.
That is terrible what you went through ....stupid docs. I am sorry,but I just do not understand what is going on with the medical community. They should really listen to their patients. .....but I am sure it is against their big ego.
Very sad, it is true with some, but not all. Their are a few good ones.
I hope you doing better :)
Primary Adrenal insufficiency is normally low aldsosterone with high renin along with low sodium and high potssium or high end. Secondary normally does not need florinef unless they have autonomic dysfunction. Testing is required to determine autonomic testing from cardio doc.
Also, If you still experiance a cycle, you must test aldosterone and renin the first week of your cycle. This is because in the second and third week progesterone is higher and aldosterone is usually goes higher during that time because the increase of progesterone in this cycle.
Most women with low aldosterone will test in the high part of the range if tested during the second or third week cycles, (luteal phase or PMS bloating period, ugh!) so it may give a false reading. Progesterone is lowest in the first week, follicular phase.. If on progesterone replacement therapy, you'd need to taper and be off the progesterone for at least 2 weeks before testing. Obviously, you should wait to start progesterone if you are planning to test aldosterone and renin.