I was diagnosed with secondary autoimmune adrenal insufficiency in December. I feel lousy most of the time, have chronic abdominal pain and abnormal stools, and feel best flat on my back...which doesn't work well for someone who works 12 hour shifts in a busy ER while selling one house, building another, and has 2 teens and a disabled husband, lol. Here's my question. If a person has say diabetes, their meds are based on their blood sugars. I feel like I don't have a handle on my hydrocortisone dosing, and my endocrinologist isn't very helpful. There is no such thing as stress dosing in my life...my life is very stressfull. I've been ill at least 3 times with abdominal cramping and pain and the need to be flat- I can't keep missing work and life obligations. How do I know how much hydrocortisone I should be on? I don't want to take too much or too little, but I'm at a loss. HELP!
Wow, I don't know how you do the ER thing and everything else with adrenal insufficiency. I have Addison which is Primary adrenal insufficiency. I take hydrocortisone (glucocorticoid) and florinef (mineralcorticoid) Primary adrenal does does make enough aldosterone so we do not retain sodium well, secondary does not normally need mineralcorticoids.
I am 52 and have had this adrenal disease for 33 years (since age 19). I have been to so many doctors, but I have found none really know what they are doing. I learned by researching the studies in the past concerning primary or secondary adrenal insufficiency and listening to what others were doing even though "We" are all different in how we respond. It helped me.
I too was afraid to increase at first because of side effects etc. They just started me on 15mg of hydrocortisone and it never seemed to help or be enough. I have had several adrenal crisis from not being on enough steriods. I was in medical field, but had to eventually stop for awhile until I got a handle on things, I had adrenal crisis from flu three times from not increasing my dosage during exercising long term, flu, surgery where i listened to my endo when I should have listened to my own body and symptoms. Now I am my own advocate, and tell the doctors, anesthesiologist what I need in terms of oral steroids during stress dosages and IV solu cortef during surgeries. They just go by the old text book rules and it is good guide to start with, but we are all different and some may burn right through hydrocortisone and may need predisone.
It really just depends on your metabolism (i have pancreas issues and had ventral pancreatic sphinctorotomy and now take digestive enzymes).Gastro doctor said it was probably from Sjogren's Syndrome affecting the pancreas enzymes. He opened up ventral duct to see if that would help. It did some but I still take lots of enzymes or I just can not eat proteins or fats. I am already too thin with low cortisol. Low cortisol causes you to lose weight. Some people may start gaining weight, but this is normally due to over treatment with steroids and/or the ratio of cortisol/dhea is way off.
I was started out taking 15mg ( 10 and 5) but I was probably only absorbing 12mg. So later on when I had the flu i tried to double it to 20 and 10=30 and it did not work. Than evening I was in severe pain, then i felt dizzy, my body felt inflammed, and i developed severe low back pain, headache, vomiting and then fainted. Everyone freaked out, calling the ambulance. Now we know what to do but next time I may not get any warning. This not a disease to mess around with. This was all because did not take enough hydrocortisone for flu. My other idiot doctor which iI fired, said oh, you don't need to increase it for flu...now this was back in 1979, but i still come across doctors that do not have a clue ...yes and even Endocrinologist. They still go by the old book rules.
So I just experimented and found that I need at least 25-35 depending on my daily stressors. So if you have a high stress job like I did then you probably do need to increase. I can not tell you how much you need but I will tell you what i did to give you an idea.
So presently I take 15mg in morning around 7am;Then I take 7.5mg at lunch and 5mg at 4 or 5pm. Plus every other day I take 0.05mg of florinef. But you probably do not need this.
I would rather be safe than sorry than have adrenal crisis or feel lousy all the time. However,since steroids can be a double edge sword we do need to take supplements to prevent loss of bone. I am sure you already know this.
I get my bone density every year and everything is good. We monitor my morning cortisol, 24 hour urine cortisol and ACTH plasma to make sure I am not taking too much steroids.
I take twin lab TriBoron: excellent product for bones..it has calcium, magnesium, copper, zinc, manganese, boron. All of which we need for bone growth. Also, take 3000mg of vitamin D. I have tried several brands and I think this is the best brand. I take every other night because vitamin D pulls up more calcium from foods so I do not want to cause calcifications in tissues. Too much D can do this. That is why I take A with D too to prevent deficiencies. Their are several studies showing vitamin D can reduce vitamin A. I take on some days cod liver oil by Carlson because it has lower A and I do not want alot. Other cod liver oils have too much A and will affect the ratios of other fat solubles. There is still a lot more we need to learn about vitamin D.
So I am not sure what dosage you are own, but like I said before if you have a busy lifestyle, then you may need to increase dosage some. Sorry, did not mean to write this much. Please excuse any types i have arthritis in hands sometimes so it can be hard to type.
I forgot to mention that low cortisol can cause low stomach acid affecting pancreas to release pancreatic enzymes. So when I increase my dosage to 25mg my stomach pain and gut motility became better. I do know when you take steroids on empty stomach in morning it does not affect us normally because we do not make as much stomach acid in morning, my gastro doctor told me that we make more later in the day. So when I take my steroids at lunch or after on empty stomach i would get abdominal pain. I then tried food and it helped a little, but found I still need more cortisol. Plus, I found pepppermint pills with ginger and fennel by Now worked great for nausea and abdominal pain. Two pills. is a miracle. You will get a cool sensation thought from peppermint at both ends. lol
What parameters do you use to know when you need more? My blood pressure is normal, I have autoimmune thyroid and growth hormone deficiency, and chronic abdominal pain, so I'm at a loss as to know when I am at the right dose or need more. As my Doctor puts it, my body is always in a state of flux, so I need to adjust my meds as needed. I'm tired of being my own Doctor!
As for how I do it all, well, when you have no other options and your family depends on you, you do it. My manager isn't real happy with my health issues, so I don't tell him or my employer the full story. I won't even go into what my back looks like on MRI and CT Scan...it ain't pretty. I refuse to be a sick person, I tell myself that attitude is half the battle. I SO wish that there was a medical specialty that just addresses Autoimmune Disease. That is really, truly what many of us need most. My Endocrinologist addresses one thing, my Cardiologist another, etc...No one puts the whole picture together.
Everybody is different and doctors don't have a clue how we feel unless they have the hormonal issues that we do. I have adrenal insuffiency caused from taking a prescription of Prednisone (yea...they never told me it could ruin my life), subclinical hypothyroidism with low DHEA. I take 12.5mg of hydrocortisone at 7am, 10mg at noon, and 2.5mg at 4 along with using progesterone cream between 6 and 7pm so it can be converted into natural cortisol so I can sleep. When I get a little sick I take an extra 5mg and not sure what I'll do if I ever get really sick....thankfully haven't ever needed to stress dose more than 5mg. It helps to hear what others take. I adjusted my doses from reading what others take.
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