My Doctors Are Onto Something

[futurehope]

Hi, y'all! I thought you might be interested in something that I have NOT read about here but has helped some people, and it might end up helping me yeah!!!

I see Dr. Khurana, a neurologist, in Maryland and he suggested going to see his colleague at Union Memorial Hospital, a Dr. Shomali, an endocrinologist. He sent me over there because the two doctors are noticing something about some of the POTS patients. They're low on endocrine hormones, specifically cortisol and growth hormone. (Who knows what else isn't working? I don't know.) Now, I've mentioned in another post, that I've already had the test for Addison's disease in which I was challenged with a synthetic ACTH to see how my adrenals reacted. I reacted fine on that test. I went from 8 mg cortisol before the stimulation to 23 mg. That's a normal response. BUT, and here's the REALLY interesting part, I was sent for a more sensitive test to check the output of my endocrine system, the ITT, Insulin Tolerance Test. It needs to be done in a hospital setting as they inject you with insulin, and watch the response of your endocrine system, and catecholamines as the blood level of insulin rises from the injection (into an IV) and your blood sugar drops way below anything that it normally drops to. My blood sugar dropped all the way to 33 at its lowest. That's really down there. BUT, my cortisol response was NOT what he expected it to be. It was 17 and he expected it to go to at least above 20 usually to 24. Also, I had NO growth hormone response, and I was supposed to be responding with that as well.

Here goes nothing. I will be TRYING supplemental cortisol at levels that are normal for a person thoughout a normal day - 20 -25 mg/day, I think, with higher levels in the AM.

I will start with 15 mg upon waking, and then 5 mg at 4 in the afternoon, and I am to check back with Dr. Shomali in a week and tell him HOW I'M FEELING. One of his patients saw a GREAT improvement from the cortisol alone. Another patient, I think he's also trying the supplemental growth hormone, but I know she's improved as well.

He will publish his findings to other neurologists and endocrinologists so they can learn from their experiences. I encouraged him to do that.

He cannot guarantee how I will respond since he's on the leading edge of finding something, but the dose I will be taking is not high, nor dangerous and he feels comfortable trying it since I responded below normal on the ITT.

Isn't this all very exciting? I'll let you know what happens.

[dizzy]

Thanks! Keep us posted.

[goldicedance]

Great news, Nancy! Keep us informed of your progress!

[laila]

That's really encouraging! I saw Dr. Khurana last month and am suppposed to have a tilt table, sweat test, and biopsy (nerve biopsy) on my feet. I don't even know if I have pots but the symptoms are there. I will keep notes on your progress in my "pots file" for my own future reference. I hope you got my email, regarding sweat test info. Good luck.

[KarenLorrel]

How exciting! Keep us posted.

[futurehope]

Laila, I am not sure what email you are referring to, unless you are Silvia? I responded to a Silvia.

[Deb]

This is very exciting news! I've been thinking that my own problems might be exacerbated or even caused by a hormone deficiency. I hope you start feeling GREAT!!!!!

[ethansmom]

I was soooo excited to read your post, I had heard about this study and can't wait to see what your results are. I will definitely explore this avenue myself if I find that more and more people are experiencing releif from the hormone supplements. Keep us posted!!

[migraine]

Wow, this really makes a lot of sense to me. Since birth I have been pooring sugar in my urine for no reason. I had a glucose tolerance test and almost died while having a grand mal seizure. I have also been tested for having extrmemely low blood sugar levels at times and was even diagnosed once as a hypoglycemic.

Doctors are stumped by this and I have not run into anyone else on this forum with this same issue. Some of my doctors seem very concerned and some don't really care. No one has ever directly linked it with the POTS. And yes, diabetis has been ruled out for awhile now. I do fasting tests about every other year to check for diabetis. Anyway, this endocrine test sounds like it could lead to an answer for my problem. Keep us posted.

[futurehope]

For those interested in the endocrine connection that this post is about, I want to clarify something. During my ITT, my blood sugar was DELIBERATELY pushed to way below normal - 33. This was done ON PURPOSE. It is a number you normally never get to on your own unless you're a diabetic and you have had too much insulin. The blood sugar is pushed way low to stress your endocrine system to see what response your endorine system produces in the form of hormones. The theory, as I understand it, is that the hormones are not producing at a "normal" level, specifically the adrenal and pituitary hormones, and this only shows up when they are stressed by the low blood sugar.

Normally, doctors tend to notice non-functioning adrenals. The whole idea is that there can be cases of LOW-FUNCTIONING adrenals that can cause POTS. BTW, my endocrinologist told me today he is a "pituitary expert". I told him, "god bless" because I was so grateful for his interest and work in helping POTS patients. I want to read the "paper" he will write on the subject when he writes it. I may end up being one of the "subjects" in his paper.

I hope everyone here can eventually be well and feel better and that's why I'm keeping you informed.

[Michelle Sawicki]

Interesting info, futurehope. I look forward to reading the publication and citing the info on our website. Best of luck to you.

Michelle

[Jersey Girl]

That is very interesting news. Just be careful on the cortisol because it can cause excessive weight gain, depression and high blood pressure. Keep us posted.

[futurehope]

Jersey Girl, I was told by the endocrinologist that he does not necessarily think I will have side effects. The reason is twofold: I have demonstrated a deficiency in my response to a stressor (the very low blood sugar); I'm being given a very low dose that mimics what is normally produced in the body. Remember, I have POTS. That, in itself, is not normal. Something is not working correctly. The dose of hydrocortisone is given to replace a deficiency, not treat an inflammation, as in asthma or arthritis. When people with NORMALLY functioning adrenals take hydrocortisone, that's when side effects can happen. My adrenals are NOT responding normally. The ITT test I was given gives my physician confidence about that statement.

Anyway, I'll let you all know.

[futurehope]

Actually, the endocrine connection is way more complicated than I was describing, and I hope everyone realizes that whatever I've said here cannot substitute for a physician who specializes in endocrine/pituitary malfunctions.

[migraine]

Yes, I'm sure this endocrine issue is a very complex issue. Sugar, insulin, and hormones are issues that keep circling back to my diagnosis, but the direct correlation has never been formed. When I had my glucose tolerance test my blood sugar level (not on purpose) slipped down to 20. Every time I am pregnant my doctor wants me to take a glucose tolerance test and I refuse because of this incident. As I said before, now I just do a few fasting results here or there.

It is hard for me to differentiate when my blood sugar is low or when my BP is low (they may also be happening at the same time.) I get the same shaky sort of nauseated symptoms. When I was seeing Dr. Stillman at the Cleveland Clinic, he found my case very interesting and presented it as a case study for them. Unfortunately it was denied and he was bummed...more unfortunate for me because it would have been nice to get down to the bottom of this issue.

I am seeing a new neurologist now (closer to home) and I will definately bring this study up to him. Thanks for the info.

[futurehope]

Migraine, It sounds to me like you may be helped by seeing an endocrinologist. They specialize in endocrine disorders that are associated with your endocrine glands and the hormones they produce. There is SO much to know about our bodies, so for instance, my ENDOCRINE doctor specializes in pituitary disorders. There may be someone else who is better at pancreatic disorders which you may be experiencing. Obviously, I do not know the cause of your problems but it SO important to keep searching. There IS an answer somewhere as to the cause of your health issues. They may be able to treat you.

I, for one, have not heard enough on this board about POTS patients going to endocrinologists to be evaluated. Those hormones in our bodies have a very potent effect on everything.

In my case, I think my adrenals responded okay when I was given a synthetic form of ACTH (a pituitary hormone) to stimulate them, BUT, it is possible that MY OWN pituitary does not stimulate my adrenals as needed. That's what I'm suspecting in my case. And if so, my diagnosis would be hypopituitarism.

See:

http://www.pituitary.com/disorders/hypopituitarism.php