kluesyk

Katybug, Yes, I am currently taking 1mg Medrol(longer acting steriod+not synthizined in liver) plus my replacement dose of hydrocortisone for the Addison's at 35mg. I recently decided to try a different way of taking the hydrocortisone as it seems I don't absorb it well orally. (Example: took 30mg hydrocortisone in AM and at blood draw at 1pm blood level of cortisol was only 2) If I get a intramuscular steriod shot I feel good for about 2 1/2 weeks, so I think mine is partly an absorbtion problem....so I am chewing up the hydro and letting it absorb sublingually. It is a bit unpleasant tasting and I have to really coat up my throat after with milk as it seems to be irritating a bit, but it is a world of difference....I am getting my hydrocortisone much better. My adrenals do not produce hardly any cortisol....last AM cortisol test without medication was 0.7 so I am in big trouble if I can't get the cortisol replaced. I do have a history of autoimmunity 20 yrs ago, so I think autoimmunity plays into this also. Hope you continue to do well.....it is so wonderful to be able to do things again when I get a steriod shot.

Yes, I am one that has an amazing response to steriods also. I keep telling my drs that this is the fix for me, but none want to be responsible for giving me long term high dose steriods due to possible side effects. I feel the same way when I get a steriod shot.....wow.... have my life back for a while....but sadly it does not last and the side effects of high dose steriods can be bad, too...... just wish someone could figure it out.

So sorry you had this experience. I just posted earlier about a horrible dr visit with a new immunologist. It is so upsetting when we are so sick and are treated this way.

Saw immunologist/hematologist yesterday and once again feel like I have been at war. I went there because my CD4 and CD8 counts have went below 200 (in two tests) and no one can figure out why. I am HIV neg, so that is not it. I did receive a steriod shot, took infusions of magnesium(I am low) and vitamins for a month and went on anti-viral theraphy with acyclovir(for shingles that keep trying to come back) and at retest the CD4 and CD8 count had improved a lot. So my reason to see the immunologist was to figure out which one helped....if steriods, then this is autoimmune. It is so hard when I have struggled so long with my illnesses to try and act stupid so a dr will help me. If you act like you know anything, they seem to shut down on trying to help you. This dr had not looked at not one of my previous labs and wanted to pull 20 tubes of blood out of me....some repeat tests I had just had done a few weeks ago. I said let's not repeat those because I have a VERY bad reaction if you take that much blood out of me....he cut it down to 7 tubes....still felt bad and they had to lay me down to get the blood. Husband had to wheel me out of there in a wheelchair. I am so frustrated. I prepare for each new dr and so hope that this will be the one that can help me....and I am almost always so upset and disappointed after. I did mention the mast cell problem to him as I have had angioedemas(not like hives, mine last 2-3 days) for over 20 years and all he tested was a tryptase. Just walking into the appointment(we could not find a wheelchair) made my blood pressure go to 178/110 and HR 130, face & chest was bright red, and really short of breath. Oh well....sometimes I just want to stop.

I also have high Co2 in my blood.... also slightly high urine PH....

Good luck! Hope you find answers that will help you!

I agree that we need sometimes to adjust both... I take licorice, clonidine AND a small amount of midodrine both in the morning. I also drink 2 cups of coffee (caffeine), put my compression tights on and can usually function for a good three hours. My Dr at Vandy said even tho it seems to contradict, some patients need both meds, one to bring down everything and one to constrict. I use very small amounts and it works for me. I am VERY sensitive to meds, so small amounts do it for me. IF I wake up with a migraine and have to take my migraine meds(which constrict blood vessels) I CANNOT take the midodrine or licorice or the blood pressure will go too high and stay there. Again....my regulators seem to be broke, so I have to always be thinking on how to keep everything even....

Issie, Magnesium helps me too. I waste 4x the amount of magnesium through my kidneys so it is a struggle to keep my levels up. I am using a magnesium gel I rub on my arms and legs now as well as an epsom salts (magnesium) bath every night and 700mg of magnesium a day just to stay at the bottom of the normal range in my blood. I think I have vascular constriction in my heart when I don't have enough blood there (as when I am upright), but I think I have a problem with vasodiolation in my legs and abdomen because I have a dramatic reaction when I stand up verses lying down. BP and HR rise dramatically upright and gets worse the longer I am up....also have to start running to rest room (excessive urination) if I am up too long and my face gets really red. I think the dialation and blood drop causes the heart to sense it does not have enough blood which causes the heart constriction, PVC's and chest pain I get....the nitro does dialate the heart, but does everything else too, so I have to be sure to be sitting or lying down when I take it. The dr at Vanderbilt had me try a small amount of Clonidine to lower the sympathetic system and a even smaller amount of midodrine to help with the vasodiolation that happens in my lower body. Coffee 3x a day plus compression hose ankle to waist helps me too. He said sometimes you need both even tho it seems to contradict. This just helps me and I don't recommend anyone try this without the advice of a dr. We are all so different. I want to ask the immunologist about mast cell involvement in this also. I have been dry flushing(face and chest) and red at tops of elbows and below knees where I am swelled for about three years now. No one has an explanation. This is not menopausal flushing....very different. I also have over 20 years of unexplained angioedemas that sometimes take 2-3 days to go away.

Thanks for the info Issie! I go to a new immunologist next week and will take this info to him. This is right down my alley. I have POTS, pulmonary hypertension, hypertension, low renin&aldosterone, past history of mixed connective tissue disease, vascular inflammation, low CD4 and CD8's with negative HIV, hyperextensive with a strong family history of aortic disections and aneurisms. And most telling is the marked improvement I get when I get a boost of extra steriods. I also am on long term low dose Azithromycin which helps me,too. (Azithro has immuno modulating abilities (blocks cytokines)., so this is VERY interesting to me. I just hope I get a dr willing to listen and not some arrogant one who will tell me not to be my own Dr.....It upsets me so much to see a new dr....I never know what I will get. I am getting so tired.....been sicker lately...three weeks ago had episode of severe headache, weakness, chest pain and blood pressure 185/120 which wouldn't come down. Finally increased Clonidine, took 1/2 Nitro and it got a bit better....blood calcium went high too. (Dr had changed my thyroid meds and took me off Natural thyroid which contains calcitonin.(which helps regulate blood calcium). Four days later I crashed big time. Dr kept calling and checking on me at home, I wouldn't go to ER unless she directed my care because of horrible experiences I have had before in the ER. Went back on Natural Thyroid and have slowly gotten a bit better. It is so frustrating that any little change can cause a big problem for me...

Yes, I just had a barium swallow test for this problem and they found I have something called....cricopharngeal atachacia(sorry may be spelled wrong)...means the esophageal muscle goes into a spasm when I swallow...told me to chew my food well and drink hot drinks after I choke... and taking a small amt of muscle relaxer helps.....my dr thinks it is aggravated because of my low magnesium as well as stress can cause it to flare up. Other options was a botox shot into the area, but I think I will pass on that for now. I choke on liquids and certain vitamins....have had a few times when ALL my air is cut off....really scary.

I take 700mg of magnesium, 1000mg calcium, 1000mg vit d, slow release potassium 60meq, liquid sublingual b vitamins, sublingual vit B12 500mg 2x a day, 1500mg vit c, 1/2 tablet of quercitin+ turmeric, acidolpholis, corvalen M(magnesium+malic acid+d-ribose which helps with energy and muscle problems) nordic omega 3 fish oil and evening primrose oil,1/4 of a licorice tablet, DHEA 1/4 of a 25mg tablet 3x a week, 1/2 teasp celtic sea salt in water 2x a day, lots of gatorade and water. If I take more licorice I have problems with higher blood pressure. However even with taking all these I still test low on magnesium, sodium, and sometimes potassium and chloride. Dr just gave me a magnesium gel to rub on my arms and legs and that seems to be helping with the muscle pain some..

I had this done three years ago due to an elevated 5HIAA. The tracer they gave me was different than the CT contrast(which I have had hives with before), so I did ok. The hardest part for me was to lay completely still for so long. I had to go back for three days for scans as my body assimilated the tracer and they scanned various parts of my body. Did not find any carcinoid. This past May I had an elevated CGA which is another marker for carcinoid, but it went back to normal on the retest 6 months later. I do have bad facial flushing, nausea, gut pain and a lot of the symptoms of carciod, but no one has ever found anything. Hope you can find some answers and the test goes well. Mine was not bad at all.

I do know my kidneys are the culprit in my low magnesium (which the nephrologist said will bring down my potassium and sodium, too). I waste 4x the amount of magnesium through my kidneys. (24hr urine test) I take 700mg of magnesium a day, soak in a magnesium bath every night, and used to take 1x a week magnesium infusions, but my veins are not cooperating anymore, and I still test at the low end of normal for magnesium. My renin and aldosterone are both low, so maybe that is why the kidneys aren't working right. Sure wish we could figure it all out.

Count me in, too. Low potassium even at the beginning and now very low magnesium, too. Which is odd considering I have adrenal failure which usually causes high potassium. I tolerate and use the blue capsules slow release potassium. I take 60-80meq a day and I am still on the low end of normal.

Doesn't work for me either....had lidocaine for a thyroid biopsy and just about came off the table....could feel every needle punch they did.

I do terrible on the steriod pack...can't take prednisone at all, (I can tolerate a small amount of medrol-it bypasses the liver) but strangely I do amazingly well on a kenalog/celestone shot in my hip. I definately think my POTS is tied to autoimmunity. Esp since 20 years ago I had a three year episode of high ANA, sed rate and was diagnosed with mixed connective tissue disease(current ANA is neg now) and also currently have autoimmune antibodies to my thyroid, too. Just my opinion due to the amazing relief for 2 1/2 weeks after the shot. I just need to figure out a way to regulate my crazy immune system without the steriod shot.....I know eventually the side effects will be worse.

I take adrenal and thyroid meds sitting on edge of bed, put compression hose on and drink water next to bed. ( next is cup of coffee with coffeemate only, with 1/4 of atkins choc/peanut bar. After that I take 0.1mg of clonidine, 1/4 of 2.5mg midodrine and 1mg medrol. Drink gatorade and water. Sometimes it takes a second cup of coffee, then I usually can be up for about 3 hours before I need more coffee (1/2 caffeine) and more medication. Best between 11am -2pm, exhausted by 5, on the couch horizontal by 7pm.

Thank you Issie for your reply. I am doing some better today, just back on the natural thyroid. Amazing how sensitive our bodies are when the autonomic system is off.

Need a bit of help. 10 days ago my dr changed my thyroid meds which caused a major chest pain, dizzy, high blood pressure, migraine episode I can't seem to get under control. Finally had a steriod shot that seems to be helping some, but still dizzy and weak and blood pressure goes crazy if I am up much. Dr called and said my blood calcium and albumin are high and wants more testing....ionized calcium and parathyroid hormone. I think she is looking for parathyroid problems. The thyroid meds she took me off contained a bit of calcitonin(Nature-throid which is like Armour) and I was without it for 6 days when I crashed hard. I am wondering if the calcitonin was helping with the calcium balance and when it was gone caused the high calcium, ect? This episode is really getting the best of me. Blood pressure was 185/120 Sunday night when I would try to lay down to go to sleep. Stayed propped up on couch all night. Taking more clonidine to bring it down and trying to not do anything. It was 125/105 when I woke up this morning....still too high on the bottom. Meds were changed due to a high RT-3 , dr was trying to put me on T-3 only to clear out the problem. Guess I can't do that. I am now back on Nature-throid and no extra T-3, stopped the midodrine and licorice as they both raise blood pressure. Anyone have this happen to them?

I am greatly improved after a steriod shot. It is like night and day. I suspect I have an autoimmune cause for my POTS just not figured it out yet. I already take a high dose 40mg of hydrocortisone to replace the missing due to Adrenal failure, but I still require more (1mg of Medrol-longer acting) to remain stable and not have an adrenal crisis. The only time I feel somewhat normal is after a steriod shot of kenalog/celestone....usually will give me 2 1/2 weeks, but unfortunately I can't do that very often due to side effects.

Rama, I have trouble understanding, but after reading the article does it mean that the substance in licorice will HELP regulate the nitric oxide or hurt? My dr has me on a small amount of licorice right now to try and help with my use of cortisol (I have adrenal and thyroid failure, severe muscle weakness and pain as well as H-POTS). She has also been giving me infusions 1 x a week of vit c and magnesium(I waste 4x the magnesium from my kidneys) and it seems to be helping some. I could not tolerate florinef due to migraines, hence the licorice use. Thanks for your help clarifying.

I finally gave in and used the scooter at our local wal mart, too. I know how you feel, I try to avoid eye contact because people have said I don't look sick....I want to say, just check my heart rate and blood pressure and you would understand....oh well. It means the difference if I get to the back of the store or not....and of course all the things you need are in the back. I too went to CVs and the dollar store a lot just because it is less walking. Drive throughs are great, too. One of the best things the cardiologist did for me was to fill out the papers for the disability parking tag...it has meant the difference if I go into a store or not. Just walking far from a parking lot, will mean I won't get very far in the store. In fact today I had someone say that I didn't look sick....I said well watch me walk for a while and you will know.

I have hyper-Pots as well as adrenal and thyroid failure. I have a terrible time balancing my cortisol (I run through it so fast) and am always struggling with my magnesium, potassium, chloride and sodium to keep them up, so I agree that if I could get these balanced, I think the pots issue would be better, in fact now that I think about it, when I am somewhat balanced the pots IS much better. My adrenal problem was only found through an ACTH stim test, the AM cortisol test did not catch the fact I am severely deficient after about 10am.

I agree.... I have a genetic history of tendancies toward autoimmune in my family (Mother and grandfather temporal arteritis or giant cell arteritis-autoimmune attack on the blood vessels, and on my dad's side, aortic disection, asthma & chronic angioedema, chronic muscle pain and hyperflexible joints). I think it just takes a certain trigger (virus, bacteria, environmental or injury) to set off our immune systems. 20 yrs ago it was a massive exposure to organophosphate pesticides that set off mixed connective tissue disease in me for over three years, then it went into remission. My body just reacts badly. I had 15 years of good health, even tho I had chronic angiodemas during that time. I decided to get horses in my middle age and worked in the barns cleaning stalls, ect. I developed chest pain and shortness of breath (might have been when I got the mycoplasm pneumonia). A few months I later dropped a bale of hay while feeding the horses and one ran into the barn and as I was bent over, hit me on top the head, knocking me out. Had a bad headache and neck pain for 10 days but thought I was ok. Never was the same....orthostatic problems began, passed out after going up one flight of stairs, potassium tanked, lost my ability to physically work, would shake and heart rate would go crazy, sold my horses, dr's said I was menopausal.....right.(that was a male dr that lived with a menopausal wife). One year later they find out finally my thyroid is not working. Another year later my adrenals aren't working..(I don't have any TSH or ACTH which is produced in the pituitary, but at the same time I have autoimmune antibodies to the thyroid, too) and this past year I was diagnosed with hyperadrenergic POTS and most recently my immune system tanked, low CD4 & CD8's which may be autoimmune. So in my case I believe the mycoplasm p bacteria that I can't seem to clear irritates my immune system, so that I have autoimmune problems, and the hit on the head messed up my pituitary so it didn't produce the necessary signals for my thyroid and adrenals to work. The POTS may be related to both. Just my opinion, but it makes sense to me.

Thanks for your replies! I decided to wait on the cardiziem. I do ok most of the time(unless I walk very far) with clonidine and midodrine together. I am so scared of new meds, I don't clear them out of my system well and have bad side effects. Maybe I will try after the holidays, I can't afford to get sicker right now. Thanks again!