Cushie said:
Mine is considered pri**** AI, since I had both adrenal glands removed. I had Cushing's Disease, the pituitary surgery didn't work so we went for a bilateral adrenalectomy.
Meds are:
Dexamethasone
Thyroid (synthroid)
HRT
Florinef (lots, due to the low BP)
Growth Hormone
Salt tabs (about five a day, more if needed)
there's more, but I always forget the names
Supplements include:
Iron (deficient)
Vit E
Fish oil
Fiber
Multivitamin
I do wear compression garments, mine are hosiery. I also took Proamatine until I started having side effects. Allergic to PCN.
No special diet aside from lots of small meals. I try to avoid too much starch as it sends me into low blood sugars. After the surgery for Cushing's I lost 135 lbs so try to maintain my current weight of 105. I can't gain now (how ironic).
My life is basically a balancing act. As I'm sure is true for most others.
Now tell me how you know all this. My diseases are fairly rare. Forgot to mention that I have Nelson's Syndrome. Too much ACTH production due to the pit tumors.
Also, thanks to all for the advice on Medicare. I will be taking part B when the time comes. I'm VERY lucky that I have insurance through hubby's employer. I don't know how some people wait all that time. What a screwed up system.
It is true, Dysautonomia is rare, however not as rare as thought and underdiagnosed which is why getting SSDI is so difficult. You are fortunate to have insurance already. Your dysautonomia is linked to your tumors and surgery so you have not only the balancing act between cardiac and neurological systems but the endoctrine as well. Life with dysautonomia is always a balancing act and medical providers often dismiss the early symptions. Be sure to use more than stockings for compression garments.
It is no surprise you are anemic because production of blood is a function of the endocrine system in part. While Proamatine is often useful it is contraindicated when you also take thyroid hormones as it causes catacholamine cascade, I'll bet that made you miserable! Since you are allergic to PCN you may also want to avoid other sulfur based medications and high sulfur foods, so if you need more fiber you may want to avoid soybean products except for fermented, dried fruits treated with sulfur, wine/vinager, some fiber treatments. Black beans, chick peas, lima beans well washed and have the highest dietary iron and a substance in them that binds with sulfur metabolites.
Are you taking cal/mag/zinc 4 times a day? That will help with absorbtion of nutrition and binding with metabolites, it will help your medications work better. You will need a high protein/low carb diet, you are correct about carbs and low bp, if you eat carbs eat them first then the protein which keeps more even BP, so ok to eat dessert first. Ask your endocrinologist to test dhea levels and ask if you would benefit from taking dhea and chromimum picolinate together, if you have no adrenal glands B5 won't help you. If you are eating iron rich foods, combine with acid for better absorbtion and not with calcium and don't take your Synthroid and iron supplement at the same time and don't combine synthroid with food at all, better if you can take in the middle of the night if you wake up. Walnuts are a great protein snack, again don't take with or near synthroid, the best nut for Omega 3 oils and will help keep your blood sugar and bp level and up.
Timing of your medications and meals can make a big difference, have you consulted a dietician?
You might try relaxiation and meditation.
If you turn on your PM feature found on your profile you can send PMs.