kluesyk

Thank you everyone for your help. I am still upset today from the dr appointment....can't believe he said the things he did. Makes me VERY apprehensive to see any more doctors. I don't think I can take any more emotional trauma...I have a hard time getting what they(dr's) say to me out of my head...I have a VERY strong sense of what is right and wrong...and some of these doctors really need to go back to school to learn how to talk to their patients. I will try and research the drs at Mayo....Arizona is pretty far away, but Dr Goodman sounds good. I am so tired and so sick. Thanks again for your suggestions.

My neurologist wants to send me to Mayo due to my increasing muscle weakness. She is really trying to help me. Has anyone had a good experience with help with the POTS? I also have autoimmune+endocrine failures, flushing and increasing muscle weakness. She is looking into referring me. Anyone found a good doctor there or am I wasting my time? Saw a new endo today due to thyroid nodule that is growing and increasing hoarseness. He is going to send me for a biopsy, but not before telling me" Wow you have had lots of tests, wouldn't you like to save all that money?" I thought it was a trick question, so I said "of coarse!", and then he said "Just stop getting them!" You know there are times......I finally said" Well I guess I am still hoping that someone will find a way to help me, my life is so changed... if this was your life, you wouldn't say that". He then said he would go ahead and order the biopsy..... We are SO SICK, and have to be upset by rude, unthinking doctors. Oh well....I think of myself as a duck floating on a pond, the downpours can come and I can even go under a few times, but my skin is waterproof....I have to let it all roll off.....I shall not sink. Sorry for the rant.....sometimes happens after a doctor visit.

thank you Sarah4 for your reply! I too have hypothryoidism, H-pots, chronic swellings and muscle pain. I also had a mixed connective tissue disease diagnosed 20 years ago which now my ANA and sed rate are normal and it is considered "in remission". and lest I forget, the Addison's(adrenal failure). I also had a head injury right before the POTS symtoms started 6 years ago, so maybe that is related,too. I already take Nature-throid(natural thyroid), Cortef(addison's), Zyrtec and Benadryl, Pepcid C, asperin, Lyrica 25mg(leg pain),Percocet for migraines and days the muscle pain is really bad. I would like to try the Midodrine, but my cardiologist is hesitant. Other things that cause vasoconstriction help me like coffee, compression hose, ice, and my migraine medicine Relpax helps too. I will talk to him again about trying a small dose. Going to see my neurologist Monday as I have gotten so weak. My muscles have no strength. I also have trouble with LOW potassium and magnesium. I take supplements. What kind of doctor did you see to help you with your POTS? Thank you again for your help!!!!!

I meant Mestinon helped instead of Midodrine. I have never tried Midodrine, yet... sorry brain not working good today!

I have been diagnosed with Hyperadrenergic POTS this past year and would like to know what treatments have been successful for others? I have tried aldomet(methyl-dopa) and propranolol which made me worse. Midodrine helped but caused too much asthma for me. Compression hose and increasing fluids and salt have helped some. I think I may have a mast cell activation disorder also as I have facial and chest flushing without sweating and 20years of chronic angioedemas. Any information would be greatly appreaciated. I am getting very discouraged, having a bad week.

I had a horrible reaction to Metformin (given to me for insulin resistence) took it 9 days and totally crashed.....could not walk, severe chest pain, worst POTS symntoms yet. It was actually after the 2 day hospitalization from that, in a stress echocardiogram that the POTS was finally diagnosed. I know it helps a lot of people and most do fine....I was just not one of them. I will never take it again. Had bad muscle pain and stomach pain with it, but thought I would get used to it. I should have stopped it before I crashed. I have VERY low potassium, renin, aldosterone, and it does say if you are prone to dyhydration, do not take Metformin on the paper I got, so I should have not tried it. Gee you would think my dr would have considered that, too.

I have the same spots show up in my brain MRI also. Neurologist said probably related to migraines, or my Addison's. I know I had a repeat MRI 1 year later and the spots had stayed the same. Five total throughout both sides of white matter. I do have POTS, and lots of leg pain, trouble walking very far, migraines, ect, so perhaps it is related. I was just happy it had not increased in a year.

Corina, What med did you find that helped you? I am having one of those days today, too. So tired of trying to find something to help me. Just tried propanonol and had really bad reaction.....low heart rate, bl pressure, chest pain and nausea...my local cardiologist just told me I have to accept my life as it is.....really hard when it is so changed.

Yep, I am one of those with non existent ACTH AND Low cortisol. Endos just say my labs do not make sense and they choose to ignore what they don't understand. Last one's explaination for my cortisol being 2.1 (when it should have been 10 or above), was my labs do not reflect my medication. (I have addison's, thryoid failure and POTS) At the same lab draw my ACTH was <5 which means WHEN my cortisol was 2.1 my pituitary was NOT asking for any cortisol(low ACTH). Sure wish I could find one that could put the pieces of the puzzle together.

Friedbrain Yes, I agree. The ACTH should have been very high if I had true primary Addison's. The fact that the ACTH was very low when I had a VERY weak response to the stim test supports your theory of atropy of the adrenal gland due to lack of ACTH. (Which in my case I think was caused by head injury or autoimmune issues). I too have been on replacement hydrocortisone now for 3 1/2 years, so it would be impossible now to tell. I currently take 35-40mg of Cortef(hydrocortisone) a day. 15mg at 8am 10mg(sometimes 15mg) at noon, 5mg at 4pm and anothr 5mg at 8pm. (Had to add the 8pm 5mg due to waking up at 3am in crisis mode (severe headache,stomach, back and leg pain, vomiting, weakness, shaking, dizziness). I manage to stay out of the hospital on this high of a dose. Doctors have no clue as to why I require so much more. If I get a steriod shot (celestone/kenalog) for any other health issue (this week was for sinus infection), it majorly helps with the muscle weakness, pain, POTS and fatigue. It is much more than "Oh steriods make you feel better", it is the "fix" for my problems. Unfortunately steriods have bad side effects.

kdj111 I too had a head injury just prior to developing thyroid and adrenal failure(Addison's). I was bent over picking up a bale of hay I dropped when my horse came running into the barn and hit me on top of the head. Just this last March was diagnosed with hyperadrenergic pots. My TSH is 0.01 with normal free t-3 and low to low normal free T-4. I take Nature-throid thyroid medicine. I did not do well on Synthroid. ACTH is < 5. ACTH was only 16 at diagnosis of Addison's through a Cortrosyn Stim test. Base draw was 3.9, stimmed to 6.1 in one hour. I have never had high potassium. My potassium, sodium and magnesium are all low to low normal. I take potassium and magnesium supplements. My renin and aldosterone have always been low for the past three years since the diagnosis of Addison's. I cannot take Florinef due to migraines it causes, so I just increase my salt and fluid intake and drink a lot of gatorade. Using compression hose from waist to ankles has helped some too. My labs always confuse the doctors. They try to lower my meds due to the suppressed TSH and ACTH and I end up getting very sick, sometimes in the hospital. (TSH and ACTH levels never come up) Last mid day cortisol draw was only 2.1 at 1pm when I had taken 30mg of hydrocortisone that morning. My ACTH level drawn at the same time was < 5. Very confusing as to where the cortisol I am taking is going. (I require a much higher dose of hydrocortisone 35-40mg a day than normal). Doctors have no answers. I also have indications of a possible mast cell disorder with red flushed cheeks and chest, red/brown patches on my skin, 20 years of chronic swellings(take 2 days to go away) in the corner of my eye and sinuses, abdomen, and bottom of feet, and bad reactions to lots of medications (hive/swellings and abdominal pain and nausea). I have a past history of an autoimmune disorder. MCTD 20 years ago (current ANA is neg) and I do currently have anti thyroid antibodies ( 250) also. Because my illness has a few layers: head injury possibly triggering autoimmune response against adrenal and thyroid, hyperadrenergic POTS, and a long history of possible misbehaving mast cells that I find it VERY difficult to get anyone to look at the big picture and actually help me. I get very discouraged at times. When I first got sick my doctor told me I was a menopausal fruitcake, when in fact I was dying with Addison's, so I am VERY involved in my care. I get copies of all labs and try so hard to find answers to make my life better, so I can be more functional. I used to be the "fix it" person, now I am lucky to walk 50' or talk 5 minutes.