The Search of Hay

The last blog entry was about my GI not having a clue what's wrong with me. I was angry, and even more angrier when another senior GI said the exact same thing, although he did say it could be IBS. I loudly thought "f*ck you", because I gave him my whole list of symptoms, and expressed my solemn concern that this list contains A LOT more symptoms than just now cured diarrhea and still present pain in the stomach, which btw is minor. Here is the list:

• brain fog
• fatigue
• dry eyes and varying blurry vision (astigmatism)
• strong pulse (but not fast)
• thirst
• diarrhea (cured already 5 years ago with gluten free diet)
• pain in stomach (minor)
• loss of hearing; high pitched constant tinnitus in both ears; pressure intolerance in water when diving even just a feet or so (pain in ears)
• cold hands-feet; discolouring of hands when cold (they go purple and rough) (also called Raynaud phenomenon)

Celiac.com Sponsor (A13):
Gluten sensitivity extremely strong (just got a week lasting poisoning from cross-contaminated rice flour cake), but celiac disease 100% eliminated now already by 4 different GIs.  That leaves NCGS and Disease X.

Later (in August)  when I though about, I really can't blame these doctors, because their speciality is GI and the science says the main cause can't be GI disease (after me going through almost all possible GI diseases). The only thing subtly possible could be GI cancer (in stomach), as suggested the senior GI, but we both agreed that the symptoms would be much worse by now, since the disease has been lasting over 7 years now. Still, he prescribed me merevebin, fluoxetine and suggested trying peppermint oil (1st and 3rd for his wrongly claimed IBS), and fluoxetine in case it's depression related psychosomatic disease. He also offered taking me hospital if none of them helps, and do some imaging to 100% eliminate the cancer, although the pessimism in that part remained.

Well, after couple of months on the meds:

• Mebeverine - negative effect, it caused constant muscle tremors and little pain stinges in the whole body
• Peppermint oil - slightly positive effect on my brain fog and tiredness
• Fluoxetine - no effect at all after 3 months of trying

Take that you IBS suggesting doctors! Doctor House would laugh. Also don't you dare to suggest psychosomatism any more, I haven't noticed any correlation between my mood and symptoms, nor has no yoga, theta/alfa or whichever brain wave positive life attitude therapy helped in the slightest, no effect from antidepressants also. Elementary, Watson.

Yet that was the exact thing my rheumatologist (a senior professor!) was left to conclude in November, because all my blood test results were OK. All! WBC normal, liver normal, no anemia, no allergies, inflammatory markers negative, "thus immunological cause almost none likely" . (I had so hoped it might be Sjoegren due to my dry eyes and wide systemic symptoms, and there is also genetic factor - my mother has an autoimmune disease, thankfully now in much less pain due to Prednisolone treatment). Well, "It is indeed curious that all the tests are normal, considering your list of symptoms", said a med student from Portugal, who is my Facebook friend. He also suggested psychosomatism and talked about his struggle with insomnia, and thus related to me suggesting psychosomatism, and continue with my Fluoxetine trial. The rheumatologist suggested "just forgetting everything and going on with life". That's what apparently a lots of people have to do.

Believe me I've tried that, I've done everything, including all the diets, ultra deep and consistent diet experiments, the yogas I talked about, and just forcing myself attending school. That worked in high school, although the cognitive down-sloping made it unbelievably hard and excluded all social connections, it would be nearly impossible to be compassionable or even talk about basic topics through that ultra thick brain fog and fatigue. Now in uni it is impossible. Due to missing all classes I've already been forced to quit whether I admit it or not. 

Yes, I chose physics, because it's my dream and passion, but whether I'd chosen art history makes no difference, since the foggyness applies to all fields of mind. I have been just wanting to nothing else than sleep past these two years. The brain fog is worsening.

Fortunately, whilst starting to do some extensive medical research about my problem since September 2014, I stumbled onto a lab that offers doing blood tests for cost. So, for a year now I've routinely given them my blood and checked my bizarre hypotheses. I excluded diseases covering my glands (I included them to blood tests because thyroid or adrenal issues have a strong correlation with fatigue/hyperactivity). Nothing there. Also Ca, Na, K okay, excluding any probable cause for my frequent thirst. But what do you know, my SHBG, Testosterone, and estradiol levels are rocketing in the sky.

So in August I visited my andrologist, and showed him my 3/3 time occurring high hormone level results of the mentioned substances. I've been visiting him before due to my andrology related hypotheses, but never mentioned my full list of symptoms, because in my previous visits I was sure the root was GI related. Now I blabbed him my full list, and what a surprise! He suggested his own hypothesis, which is actually a scientific HYPOTHESIS, that is that there may exist a condition related to androgen receptors, namely they become overactive and cause a whole lot of symptoms. Since the clinical research trials of the topic hadn't even been yet determined, he invited me back, but first sent me to that professor rheumatologist who he said to have a sharp mind (definitely some professor-student memories here), to exclude any other possible causes (because let's be honest here, it's much more probable that you've been misdiagnosed than that you have a disease not yet scientifically discovered and classified). I of course visioned that professor as the Dr. House of the hospital, if anybody then she would be the one to unravel my mystery. But it went as I previously described. No Dr. House there.

However in December I revisited the andrologist, and he took my blood sample to be used for the future trial. He said if I had the hypothized condition, then the treatment would of course also be experimental, thus probably little hope for improvement.

Self-doctor Remi of course didn't just stand to wait for the experimental treatment. He experimented himself. So I found this site http://www.peaktestosterone.com/Free_Testosterone_SHBG.aspx which seems to be meant for aging men with low testosterone. I have too high testo and I'm young! Fortunately the site also tells how to lower ones SHBG, which leads to overall increase of FREE testosterone, which is the testo that actually has the effect on your body. My free testo one the borderline of low, thus if one thinks of causality it is most likely high SHBG - > high testo - > high estro (the last causality was also explained by my andrologist, the excessive testo is converted into estradiol; and he also said there is no way that the high estro, which can be malignant to men,  alone could cause my vast list of sympsoms). Anyway, what I was going to say was that the site gave a lot of DIY treatments for lowering SHBG. So I started taking Nestlé Nesquik cocoa that by luck contains four necessary ingredients (Zn, Mg, vitamin D and sugar), then also bought boron and stinging nettle supplements. The stinging nettle was bad, it made me very thirsty and tired. I found out it warned about containing Chromium, which from my previous experience I already know to have the said negative effects on me. But leaving that out I noticed quite considerable improvement in my cognition and fatigue levels. I even found energy to start a new hobby, composing. 

The thing about experimenting is that one as to exclude any possible outer factors. So I got a week of improvement after starting the supplements which I hypothized to be beneficial, then a week of extreme tiredness. Goodbye to composing. What??? Did the supplements have a side-effects kicking in after a week of use? Like Prednisone helping you in the beginning, but terrorising you after years of constant use? So, I hypothized three possible factors:

1. Gluten poisoning
2. Reaction to supplements
3. Fluoxetine withdrawal effects kicking in after three weeks of delay

The order which I wrote them signifies their probability. Gluten poisoning was most likely, because my grandmother had used the same sheet for cooking my gluten-free rice cake that she uses to cake wheat cakes for my other visiting family members. But I lacked the pain in my lower back that has always been ipresent when gluten poisoned, and I wasn't perhaps THAT tired than the last time I definitely was poisoned a year ago. Fluoxetine withdrawal was least likely, because three weeks is too long I think. Anyway, now a week later I again feel like writing something philosophical like this blog post here and composing music. Which matches the pattern formed from my previous gluten poisonings: a week of bed from a tiny piece of bread. OK, probably too endorphin-high right now to start making rhymes here. The point is, I'm happy because it really seems to be gluten poisoning, which means the supplements still work and the effect might be even on the same level as when going gluten free 5 ys ago.

I just also discovered that I have high aldosterone and renin (didn't have them tested before because due to misinfo thought the lab didn't offer the test). Another thing the doctors have missed! But my cortisol has always been normal. That means secondary aldosteronism, and within the last hour I already did research about the possible causes. Three remains, I plan to visit a doctor of internal medicine to get some advice on this, because for me having one of those conditions is still more likely to suffer from scientifically yet only hypothesised andrology related disease. But it still isn't clear to me how the renin and aldosterone are related to my constantly high androgen hormones. Of course the outpeak of those two could also have been caused by gluten poisoning, so before further conclusions I'm going to retest them.

Forgot about the header? Why I think I am Mycroft. Because the just aired episode (The Abominable Bride) contained a hilarious scene where Mycroft and Holmes are betting on how much years dear enormous Mycroft has left to live before he dies due to heart attack.

"3 years flat if you eat that plum pudding." "Done!"

Those brothers are bound to solve any mystery, no matter how difficult it seems to others. I'm going to try solve mine, no matter what those doctors say. This has been the most difficult riddle in my life, but Mycroft is kind of right: hypothizing on my life really is fun. I may die tomorrow or before that roll down the hill of becoming an Alzheimer-like drooling idiot, but perhaps I can solve the mystery and avoid all that. I hope the latter.

Peace out, fellow sufferers and players.