Also posted this on pit. tumor forum and it is very technical, but I'm wondering! I was looking over some old labs and some info on aldosterone and renin from a couple of sources. While one source says people with POTS w/hypovolemia have paradoxically low renin and aldosterone levels and the cause is not exactly understood- they hypothesize perhaps the kidneys are being denervated, another site says if aldosterone and renin are both low they think there could be a problem with the pituitary.
Since my tumor was discovered, the first endocrinologist I saw ordered aldosterone and renin testing. It was a fasting test where both aldosterone and renin were low. One endocrinologist did not want to re-test these things as if even if they were low, he said there was nothing that could be done about it. I did just find online something about a test on rats where aldosterone is lower with fasting apparently. But I wonder if it makes aldosterone outside normal range? Anyway, a third endocrinologist tested aldosterone only & I wasn't fasting, and it came back normal.
Another website about another experiment with rats indicated ACTH and GH had an affect on aldosterone. And it looks online like the pituitary also has something to do with renin secreting (feel out of my league there as to whether that renin angle is a piece of puzzle that would fit my situation so to speak). I'm just wondering if it is possible whether my pituitary tumor could be causing my POTS? And if so, if some other people with POTS might have pituitary tumors and not realize it?
I am sure I have read that some tumours can cause POTS, but I cannot remember if this was talking about malignant tumours. I will have a search and see if I can find anything relating to this x I hope you are okay x
Thanks! I got a reply from rumpled on the pituitary tumor forum as well and I looked up Addisons (I wonder if this may be your problem?) and found that secondary adrenal insufficiency can be caused by the pituitary but aldosterone is not usually affected... looks like it is unlikely my pit tumor is causing the POTS then. But with your adrenal tumor, I wonder??? I seem to be having low energy and have a virus at the moment. How are you?
I have looked for info on this and the only relation I can find between tumours and POTS is malignant tumours, pheos and ones affecting cortisol production. These you are already educated on. I will keep looking though........ x
When I 'crashed' last May I was at first suspected of having Addisons as I was so symptomatic of being in an addisonian crisis so my cortisol levels were checked. I was told the first 2 were fine and the last one was high so I had an overnight dexamethasone test (sp) which was also fine. I posted here on the adrenal forum for advice also regarding high cortisol. But when I recieved copies of my testing results my 8am cortisol levels were the very lowest of normal. My thinking is now - if I was so unwell and stressed by this and being away from my children so long shouldn't my levels be higher??? And also, shouldn't morning cortisol levels be higher and lower throughout the day? The 3rd cortisol was done at the same time and was high. Maybe possibly my tumour is altering the production of cortisol and this could be adding to my symptoms. I am considering 24 hour cortisol testing but am not sure how to go about this in the UK. I should make some enquiroes really. My laying and standing aldosterone and renin levels were checked back in december and they were found to be fine. I wasn't taking the Fludrocortisone at this time so they would not have affected the results. Also my Potassium levels are low and sodium on the high end and usually with addisons they are the other way around. Have you been checked for this - it is a differential diagnosis for POTS? This should always be checked for if you have POTS symptoms.
I haven't been good, I still am unable to function :( x I spoke to my Neuro on the phone and he wants to see me on Monday, I think he is going to talk to me about more meds. We were trying to wait until I have the further testing by Prof Mathias in London but I simply cannot go on like this. BUT saying this I have just had 2 better days....yay x Short lived as I can feel myself going down again but still enough to give me hope :) x I am going to speak to the doc about fluid IV's i am hearing more and more good things about this line of treatment. I had a couple of bags of fluids (glucose inc) whilst waiting for an endoscopy ( I was nil by mouth and I had a hypoglycemic episode, although I am not diabetic) and felt GREAT......I could have stood up and walked out!!!
Sorry you are not feeling so good too x I hope you are taking it easy. How are your ferritin and iron levels? Big hugs to you x
As far as I know, no checking for Addisons came with the POTS diagnosis. It was never mentioned by the electrophysiologist who diagnosed me by tilt table nor the cardiologist I was seeing at the time.
After my pituitary tumor was discovered, I had a couple of cortisol (one AM, one PM), one renin (AM) & two aldosterone levels (one AM and one PM) checked and a cortisol stimulation test done most recently. The first and last one came out normal. The PM cortisol flagged as low, but they had AM reference range, I think & I was told it was normal. The fasting renin and aldosterone both came out low, but another endocrinologist when I asked for further testing on that said nothing could be done even if it was low. And an endocrinologist in the state I now live in checked only aldosterone in the PM, which came out in normal range.
I haven't gotten my iron and ferritin rechecked yet, but expect to, Lord willing, soon. I'm sorry you're feeling so poorly lately. Check with Rumpled on the pituitary tumor forum for the best way to do cortisol testing- she's very knowledgeable as she has Cushings, etc.!
I don't believe you have to be diabetic to get hypoglycemic. I think I was in nursing school and a RBS for me came out really low with a *****. And on more than one occasion I've gotten migraine from not eating on time- once horrible backache as well (at Disneyland at the time) and once working in a department store came with the shakes and cold sweat, if I remember right.
My bug turned into a stomach virus today along with sore throat. It started out with malaise for more than one day. Today I haven't done very much other than hurry to the facility! Thanks for your friendship! I think so many on this forum are doing so much worse than I am with their orthostatic issues. It makes me feel things could be so much worse and I have much to be thankful for! I've pretty much grown used to the tachycardia and my TMJ arthritis often looms as my nemesis.
Another difference between our symptoms and that of addisons is that people with addisons usually have postural hypotension, were we have postural hypertension. Although I have read that this can happen for some!! So its always definately worth checking for in someone displaying POTS symptoms.
Regarding your the low renin and aldosterone levels I found this table:
But with regards to treatment for this I am not sre, although isn't Fludrocortisone a aldosterone replacement/booster?
Because of the Hypo's I was having they also investigated me for an Insulinoma when they first were trying to figure it out. I loose co-ordination, my eyesight becomes effected, I really become symptomatic!! Not nice. But nothing Lucozade and a snack doesn't fix. The annoying thing is these happen even when I have eaten or if I have had something sugary. Also, sometimes I feel like my levels have dropped but they are still around normal levels.
I hope you are starting to feel better xx You have been in my thoughts x It is lovely to have such nice people on here to relate to x
My son's endocrinologist does not believe his pituitary tumor caused his POTS- like symptoms, and neither did the first neurosurgeon we spoke with. But there is obviously some indirect relationship between the two conditions the doctors don't understand. This endocrinologist has no other pituitary patients with POTS (I'm saying POTS because that is my son's symptoms - not formally diagnosed). Rather than eagerly taking on my son's health problems and solving this mystery, as I hoped he would, he just suggested I try taking my son to Vanderbilt, which unfortunately is a couple thousand miles away!
When his orthostatic intolerance and tachycardia first started, I asked a different endocrinologist if aldosterone and renin should be tested.He firmly said no, his pituitary would not affect aldosterone and renin, they function independently of the pituitary, or something to that effect. He ordered another MRI and wrote "pituitary failure" on the form.
However, he knew my son had secondary adrenal insufficiency and was taking hydrocortisone. I asked if he could be tested for adrenal failure, other than the cortisol deficiency, maybe tested for a pheochromocytoma. He said something like, let's just concentrate on the pituitary tumor right now.
The specialists I took my son to for six months after this ( a rheumatologist, pulmonologist, neurosurgeon etc.) all said the same thing - get the tumor removed and then we'll see how he is. No treatment. They all assumed the tumor was the cause of the OI. Well, the OI symptoms are just the same today as they were 16 months ago, and it has been six months since the tumor was removed. Still so severe that he can't stand for more than 1 minute.
His sodium, potassium, cortisol, T4 etc. all test in normal range (on hormone replacement). He has not yet been started on GH or testosterone. I read that low growth hormone, combined with secondary adrenal insufficiency due to a pituitary tumor, is a cause of hypoglycemia in children, and this makes sense to me. I know he had several episodes of hypoglycemia the first two years he was sick. Thyroxine seemed to make it worse, as well as causing tachycardia.
I am wondering if his lack of testosterone is contributing to the POTS, since this illness frequently attacks adolescent girls. I had thought his lack of growth hormone must surely be a contributing cause, but all the info I've found suggests growth hormone can only make the symptoms worse, if it's affecting it at all.
He also has some anxiety now, and epinephrine (adrenaline) surges at times, especially when he lays down to sleep. Makes me wonder if he has supine hypertension.
I will probably never find a single doctor who can put all the pieces together, and get my son back on his feet. Is it a norepinephrine spillover problem? Are his blood vessels overdilated from an autoimmune condition? (he had an ANA of 1280) He has a glutathione deficiency and high oxidative stress also. I hope when he starts on GH that most of his problems will improve, and not get worse!
Oh, about your TMJ. My son started "popping" his jaw at some point. I assumed he had some discomfort due to endotracheal tubes for anesthesia, forcing his jaw open for long periods. I am currently taking him to an osteopath, to see if craniosacral therapy can help with any of his symptoms. After his first exam, the osteopath said "his sphenoid bone is jammed". I had read a little about people recovering from TMJ problems after craniosacral treatment. So, we'll see if this doctor can do anything helpful.
I hope your virus is under control, and you're feeling a lot better!
Thank you for your thoughtfulness in trying to help me when you guys have a lot on your own plates to deal with! From what Eve posted, it looks like the closest I came to the combo would have been Cushing's, but the cortisol didn't fit me. And the neuroendo made it plain I didn't present as someone with Cushing's, even though it seemed like my cortisol numbers in normal range seemed to flex quite a bit from one test to another. I guess she ruled out Addison's with the cortisol stimulation test she ran.
Also, the info I have from a website says standing (I was sitting though when fasting) levels of renin and aldosterone can be low with people with POTS who have hypovolemia. So I'm guessing maybe it's just coincidence me having a pit tumor and POTS both.
It's interesting, enzy that you say that it frequently attacks adolescent girls, because the electrophysiologist said it usually comes out about the third decade of life (which fit me). I wonder where he got that info from. He also said it was hereditary and I later learned I have a second cousin who has POTS. I wonder how many of those adolescents females are iron deficient from their menses?
Re: my TMJ- a maxillofacial specialist explained to me I have a classic type two overbite & that my lower jaw is congenitally too small for the upper. Ordinarily, if arthritis hadn't set in, they might have suggested a surgery whereby they would put in an extender to the lower jaw. He said people with overbites like I have are much more likely to develop TMJ problems.
I'm feeling some better today, but not 100 percent. Thanks!
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