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Demografx, it's good to have friends who are also researchers! Thanks a lot for your commitment to find a cure for pois for all of us. With Dr Waldinger, and the recent other people you were able to contact we feel less alone now. I hope we'll always grow in this direction. I understand you about the tests with lancets, I suppose it's normal because we all have our phobias, specially me, and perhaps all of us because of pois. Also I know that a lot of people have this blood/needle phobia. In a last attempt, just in case, here are two videos about lancets. The first is explaining how quick it is. The second which is not with the lancing device, you'll understand why, is showing the size of the needle.http://www.youtube.com/watch?v=g9e1PysysWI&feature=relatedhttp://www.youtube.com/watch?v=_zE12-4fVn8I hope it will help a little bit.I'll read about IL6 for the first time. I'm not sure if we have a rare disease or not it's very hard to say.
I'm not sure if this registered...My blood cortisol levels were tested, and they were high. This can be dangerous, and could very possibly be a result of POIS. It is something we had suspected beforehand. It was a test the research neurologist I saw on the 23rd ordered.To everyone on this forum: I cannot advise you more strongly to go and get a cortisol blood test as soon as possible. (e.g. on monday). Get an AM and PM test. Try and do it while symptomatic.
I just had a standard blood test (which I can't read, except for GP's comment, "all looks good") Would this typically test blood cortisol? I have 2 pages of results, what should I look for? Thanx!
Girlwind, can an accupuncturist or other naturalist draw my blood for these tests?
...Since all it requires is spitting into plastic vials, four times during the day, you might consider that...
...That's actually a good idea...
Demografix,On my test report it said clearly 'cortisol 8 am' so I guess if you don't see 'cortisol' it was not included. I don't know another name for cortisol anyway. My 'in pois' cortisol 8 am was 306 nmol/L, so 9% above the lower borderline of the normal range (250-850 on my form). I will update when new info is available.
Girlwind, sincere thanks for the cortisol tutorial!Do you have any similar info on prolactin?
SOME INFO ON PROLACTIN...
Were on a Cortisol kick. Check this out!Adrenal exhaustion is more difficult to resolve. Adrenal exhaustion involves a depletion of energy reserves and a loss of resilience. Symptomatic signs of adrenal exhaustion can be as diverse as fatigue, nervousness, anxiety, severe PMS, depression, brain fog, carbohydrate cravings, allergies, muscular pain and tenderness, joint pain, and irritable bowel syndrome. The goal of nutritional therapy in this situation is to restore the natural, diurnal release of normal levels of cortisol. The theory is if you provide the body with a small amount of a cortisol-like substance, the adrenal glands can take a rest and have an opportunity to regenerate. Then normal cortisol production will be restored.
Quote from: Limejuice on 01/11/2008 15:43:30Were on a Cortisol kick. Check this out!Adrenal exhaustion is more difficult to resolve. Adrenal exhaustion involves a depletion of energy reserves and a loss of resilience. Symptomatic signs of adrenal exhaustion can be as diverse as fatigue, nervousness, anxiety, severe PMS, depression, brain fog, carbohydrate cravings, allergies, muscular pain and tenderness, joint pain, and irritable bowel syndrome. The goal of nutritional therapy in this situation is to restore the natural, diurnal release of normal levels of cortisol. The theory is if you provide the body with a small amount of a cortisol-like substance, the adrenal glands can take a rest and have an opportunity to regenerate. Then normal cortisol production will be restored.Sure sounds like POIS!
I'm just not ready yet for a lancetI do believe it's rare (Disease is another question, but that's just terminology/semantics). Dr Waldinger, who specializes in sexuality medicine, only came across 5 cases of POIS in 5 years. And with all the physicians and healthcare professionals seen by this forum (I would guess in the hundreds) - - NOT ONE healthcare professional has had any idea what POIS is. And if it were more common, we would also have seen more than just ONE study (Dr. Waldinger's). But if you still doubt "rare" please tell me why.
Periods of poor concentration have been there as far back as I can remember and that may have been ADHD, but it could have been POIS!
About cortisol I would recommend if possible to do a saliva test and a blood test at the same time, so we'll be able to see the differences. If we want to make research by ourselves on this, the saliva test would be very useful(to make more tests and find what is really effective to decrease cortisol).Girlwind, you probably know this, when you stimulate the thyroid you can increase the problem with the adrenals, that's what some sources (bad or not ?) are saying. Because of this you can stop your thyroid treatment even if it's needed.About ashwagandha I took it a few weeks ago for the effect on HPA axis and my pois was aggravated, I can't explain why. Also It's an aphrodisiac. Specially for men with pois maybe it's not the best thing. This was a problem for me with ginseng.
I have no idea what blood test is good to test cortisol levels. (There is actually a lot of controversy about this.)I have heard that there is a 24-hour urine test, which is used more commonly, and also a cortisol provocation test.I just go with the saliva tests, because they are easy to do by one's self and the results have rang true for me. Also, it could get really expensive to do so many tests--both saliva and blood, before and after POIS... that's a lot of money. I have no insurance and have to pay out of pocket for all this, so I'm not willing to dish out the extra cash. As for ASHWAGANDA, I have been taking it for about two weeks and have experienced NO aphrodisiac effects from it. It's an adaptogen (helps the body adapt to stress), and supports both the adrenals and thyroid. For me it's been just as easy to take as Siberian Ginseng Eleutherococcus senicosus) and Schizandra, which have had similar affects.
Martin's quote from article: That stress drives changes in fingertip temperatures that appear to fluctuate differently than do those in non-ADHD patients
...it could get really expensive to do so many tests--both saliva and blood, before and after POIS... that's a lot of money. I have no insurance and have to pay out of pocket for all this, so I'm not willing to dish out the extra cash...
...Yes it takes money to do research, unfortunately we'll always be confronted to this problem...
Thanks for your answer! Yes it takes money to do research, unfortunately we'll always be confronted to this problem. Anyway I'm interested to do the cortisol test to see what's going on. Maybe I'll be able to have a better quality of life, which is a major problem for me. For aphrodisiacs perhaps it's different for women. We don't have the same hormones. I can take siberian ginseng without problems but not korean ginseng.. I didn't try schizandra. I'm a bit desperate to find a solution for pois in supplements. I have to stop taking melissa because I feel very slow after a week. However it was a 50% help for sleeping. I'll take it again.I'd like to try 5-htp or tryptophan but this is not encouraging :http://www.cnn.com/HEALTH/9808/31/tryptophan/
...I strongly advise going to a physician (MD), and getting these tests ordered. I would suggest not involving alternative practitioners (naturopaths, acupuncturists, etc.) at this stage...
Girlwind, the research neurologist I talked with disagrees with you in regards to thyroid (he seemed to only care about TSH).
Counterpoints, can you say why naturopaths/alternatives should be avoided for now?
Do we have a theory yet that could link hypothyroid to POIS?
Quote from: Counterpoints on 02/11/2008 21:53:04Girlwind, the research neurologist I talked with disagrees with you in regards to thyroid (he seemed to only care about TSH).He's wrong. I am living proof of that, as are the other "estimated 26 million cases" of undiagnosed hypothyroid.
It appears that we have a philosophical split in the forum, MDs vs. alternatives/naturopaths. Ultimately it's each person's decision how to test their bodies. Further, some people have financial and/or insurance issues.One understanding I have (from girlwind) is that MD's don't typically test certain forms of thyroid interaction, and perhaps others.And another understanding most of us have is that naturopaths and the like won't/don't subscribe to the pharma/drug Rx world.Counterpoints, can you say why naturopaths/alternatives should be avoided for now?I think opposing points of view should also be aired now.As added input, it should be understood that, at this stage, of the 3 outside researchers we have tentatively engaged with the forum, 2 are MD's and 1 is a Ph.D in Biophysics, but my guess is that the latter leans heavily toward the Rx drug/pharma world because of his AIDS research and the medical firms he founded.Thanks much, all!
...IN MY CASE there is definitely a connection between MY POIS symptoms and MY thyroid, something I would have never known had I only tested TSH...
Quote from: girlwind on 02/11/2008 22:16:22...IN MY CASE there is definitely a connection between MY POIS symptoms and MY thyroid, something I would have never known had I only tested TSH...Girlwind, what I'd like to ask you is not being negative or critical. I'd really like to know your thinking. Why do you think your POIS and thyroid are related? Is it basically that the better the thyroid readings the less severe is the POIS?
Naturopathy vs. MD testingMy conclusion is that we are all grownups and should choose our own individual path of enlightenment.Please read the previous recent posts which address this debate before deciding. Thank you.Happy testing!
Thanks for the posting. We definitely have the freedom to choose who we see or don't see for our ownindividual personal health care and diagnostic testing.
With regards to prolactin, I spent several weeks trying cabergoline as a cure to POIS last year. Cabergoline is supposed to suppress prolactin prodution in the pituitary gland, however it had little real effect on my POIS symptoms.So either the drug was not doing what it was supposed to, or in the case of my POIS symptoms, reducing prolactin levels didn't have much effect.Of course other people's POIS symptoms may be due to different causes to my own, and prolactin may well play a key role for many people here - just wanted to add that there did not appear to be a strong link with prolactin in my own case.
Alternative Medicine vs. MD testingI think it is in the best interests of everyone on this forum that people go down both paths. They both have their pros & cons...
...On this pituitary forum there are also numerous stories of people getting dicked around by incompetent/negligent/lazy medical specialists.I will monitor my post there and report back what I get. Cheers