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Mystery Condition - Cognitive Decline
Hey what's up guys.
Unfortunately I'm dealing with some sort of mystery disease and after several years of trying to figure it out I've not made any real substantial progress. My GP was of course unhelpful and couldn't understand anything besides what an anti depressant or adderall could treat so I started my own research. I also saw a couple psychologists who said that I just needed to talk about my feelings and that it was all in my head. This has been a slow progressive disease that started about 8 years ago and peaked about 4 years ago. 24 yo/male. I've made SOME progress with a couple supplements but in reality I'm not doing very well. I've created a packet that I intend to take to an endocrinologist as well as a neurologist to speed up their understanding of where I'm at, and I'm just going to share that with you now. I still have no idea what this problem could possibly be but it's effectively destroyed my life. Everything that made me who I am is basically gone. I'm just struggling through day to day praying that the new supplement I purchased after weeks of research makes all this go away and that my next forum post or doctor visit will yield SOMETHING definitive. I know I'm not that important in the big scheme of things but I need some serious help here and would be eternally grateful if someone could point me in the right direction. Thank you so much for checking this out if you have/will and if anything clicks here, please share! Also, I have links to discussions of my situation on several other forums but I can't post links yet, if you'd like to see them feel free to PM and I'll link you right away. Theoretical Diagnoses
Symptoms Quote:
Confirmed Disturbances Low Temperatures Quote:
Confirmed Epstein-Barr Virus 11/29/12 Subclinically Low T Date Taken: 11/29/12 Free Testosterone @ 8.9 ------- UNITS: pg/mL ----- Reference Range: (9.3-26.5) Low Total Testosterone @ 399 ------- UNITS: ng/dL ------ Reference Range: (348-1197) SubC Low Elevated Cortisol Levels: Quote:
7:00 PM - .05 mcg/dL (error??? extremely low) 11:16 PM - .26 mcg/dL High (< OR = 0.09) 3:20 AM (Bed) - .20 mc/dL High (< OR = 0.09) Here are the reference ranges provided by Quest: 8-10 AM: 0.04-0.56 4-6 PM: < OR = 0.15 10-11 PM: < OR = 0.09 Helpful Supplements & Response
Labs Date of Service: 09/18/2014 – Thyroid Panel (All normal)
Date of Service: 09/05/2014 – T Level Investigation Panel (Subclinically low T, slightly elevated E2)
Comprehensive Lab Work (Chem/Lipid Panel etc): Unable to share links, so I'm not sure how to share this. I scanned the documents and uploaded the pictures. They all turned out normal though, just wanted to share everything I had if I could. This is a lot of information and a lot to process. I have a lot of theories with evidence supporting them with each piece of evidence but after some of my fundamental theories being put to rest by lab results and testing (Schizophrenia, Low T, Hypothyroid, Adrenal Fatigue) I'm basically lost. I don't know exactly where to even begin looking anymore. I plan on seeing an Endo and Neuro ASAP but until then I'm still doing as much research and discussion as possible to try to put this nonsense to rest, or at least find some comfort in a diagnosis. If you want any more details on any of the information provided feel free to ask, I will be checking this and other threads like it every day. Thanks guys, it means the world to me. |
Welcome to NeuroTalk:
Did you get your B12 measured? And your Vit D? Can you tell us if you are a vegetarian, and what your diet is like? Also what is your body build? Tall? Slightly overweight? Difficulty with putting on muscle? That low T signals something for me, but I need to know more about you. |
Welcome AlmostEasy. :Tip-Hat:
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Hey guys! Thanks for the welcome
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25-OH Vit D @ 26.5Lf ng/dL (30.0-100.0) Vitamin B12 PG/ML (180-914) I've been supplementing with about 5k IU/day since I learned my Vit D is low, that was about 2 years ago. I've also been using "NOW Foods Ultra B-12 Liquid, 4-Fluid Ounces" without success. It does give me a subtle boost but it's definitely weaker then even half a cup of coffee. My build is tall and lean/athletic. I'm actually slightly under weight (always have been) and difficulty putting on muscle very much yes. I've been able to do it but only because of how dedicated I tend to be towards my goals. In the gym 3-4 days every week and literally counting calories until the weight goes on. I've less drive to do this nowadays but I'm still trying and having some success. Most kids putting in the effort I do would probably blow up pretty quickly. It's quite a grind for me. Not making excuses, but just saying. Thanks for the interest, it means a lot. Any more questions please ask, I'll be checking daily. |
Whoops, forgot to put in "684" for B12 level. Unable to edit my post, sorry!
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My son has a male friend who cannot build muscle and remains weak.
No amount of working out works for him(he also has lowT and is in his twenties like you. After much evaluation by a doctor, this doctor decided to test him with a DNA test for Klinefelter's syndrome. (fragileX). These men have 2 X chromosomes and 1 Y. They often go undetected for life, unless some medical reason is present for further testing. As expected, my son's friend tested positive for this. Klinefelter patients have many signs of ADHD, poor energy, and slowed cognition. Here is a more detailed article: http://ghr.nlm.nih.gov/condition/klinefelter-syndrome Not all Klinefelter patients demonstrate all the physical characteristics. But lowT is the most common indicator. Since you are exploring so many avenues for your symptoms, I'd get that DNA evaluation to rule out Klinfelter's. LowT in a young male can also be due to some pituitary dysfunctions, and an endocrinologist is best to see for that aspect. You will need to take that B12 with an empty stomach, and keep it in the frig once opened. MethylB12 is not stable in heat, in liquid form. "Boosts" from B12 are not really present except in the first few doses. Was this before any supplement? You have to stop the supplement 3-7 days before having testing done, or false elevations will result. |
Interesting. I do have glandular gynecomastia (caused me a lot of strife in my youth - it's still very minimal though) and reduced facial hair for sure. My father said he could grow a full mustache at 19 and I'm not even close to hitting that.
I suppose that's a possibility but up until I was about 21 I absolutely excelled academically, and my sex drive used to be huge. It is slightly lower now but it's still there. From a brief reading it looks like people have developmental problems their entire life? But then again my tests and some symptoms don't lie. I'll begin looking more into this! Thanks! |
Many Klinefelter patients remain undiagnosed for life.
And they all present differently too. There is a great variance among them. You certainly do seem to have a cluster of symptoms suggesting it. Klinefelter men may be teased or bullied in school as well, especially the ones with more obvious external signs. (there are photo images on Google of the common body types...but not all Klinefelter patients exhibit those characteristics.) Treatment is with a testosterone gel or injection. The major issues I think are infertility (the testosterone gel makes this worse) and the increased risk of breast cancer and autoimmune disease.(which they have to be aware of should they occur later in life). There are also toxins in fire retardant furniture that we are exposed to that are hormone disruptors. http://en.wikipedia.org/wiki/Endocrine_disruptor There have been media reports this week in fact about removing fire retardants from bedding and furniture now. |
Alright, I'll make sure to mention it to my GP/Endo. I'm pretty sure my GP will write me a lab write up for anything I bring her that makes sense.
Until then does anything else stand out? I realize I may have a very tertiary 3rd derivative condition, well almost certainly, but any additional theorizing helps. Thanks! |
Do the DNA test first... see what that shows if anything.
Good luck. |
Symptoms of
At least a part of your trouble might be traced to wheat or even (something I just read about two days ago) cats. I can't post a link here, but google "cats" and "Atlantic Magazine" and see if you can find the interesting article.
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Quote:
Good eye, that's one of my theories actually, Toxoplasmosis Gondii. I've been around dozens of different cats through my life, it's pretty likely I have that even if it isn't causing me problems. I can't find too much information saying it can cause such serious problems but ruling it out is probably a good idea. I'll add it to my Klinefelter lab write up if possible, thanks for the reminder! |
Welcome Scottford. :Tip-Hat:
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Well it looks as though genetic testing is not covered by my insurance so that's just not going to happen most likely, unless my neuro/endo says absolutely we should look at this and makes a strong case for it.
In any case tomorrow I'm going to call my insurance agency and see what neuro's/endo's are available in the area. My doc did OK any references I may need so now it's just getting everything set up to go in. I'm strongly considering trying low dose Zyprexa as well (2.5mg). I've talked to several people with similar mystery diagnosis' and they've said their most beneficial medication has been low dose Zyprexa. I'm not that excited about trying an AAP but I need something really bad and if it helps me as much as its helped them maybe that can tide me over until I find the root cause. Later! |
Looks like I'm going to have to cancel the Endo because of logistical problems with me moving away and them scheduling the appointment almost 2 months out right before I move.
I've been on Zyprexa 2.5 mg for almost a month with moderately positive results all around. I'll be going on to 5 mg tonight and I'll see how that goes. The problem is still there and it's still a very large issue but this is a useful tool for sure, a nice band aid if you will. I've a doctors appointment tomorrow and I'm going to see if I can start on Armour thyroid meds to level out my body temps and see how that affects my cognition. His first suggestion was to put me right away on TRT but I'd like to treat the obvious problem downstream before I start using TRT as a band aid. If the thyroid treatment does not help the cognition and only the fatigue and my test levels don't rise with the more functional metabolism I will then resort to TRT. Even if my problems aren't directly caused by my low T it would be very nice to be treated for it just for optimizing my health overall. I would very much like to be at an optimal range I can tell I've been low my entire life. VERY late puberty, almost no facial hair, glandular gyno, slow healing, high fatigue rate. This would be incredible to remedy. I'll update with any interesting results. Ciao! |
It appears as those I have something called a "Vericocele" which causes low T in 10%-15% of men. I haven't had it officially diagnosed but it's quite obvious and that problem has been present and has been making me wonder for quite a while. It didn't click until I read about it when doing research on reasons for low T in young men.
I've been on TRT for a little over a week and I haven't felt much from it yet, it takes 3-4 weeks from what I read for sense of well being effects to kick in, and many more after that to hit maximum benefit. A lot of guys claim some pretty strong cognitive issues with low T so perhaps this will help. I have my doubts, my progression and intensity just seem too strong, but of course I could be wrong. I don't know. Other than that, I still have no leads and no strong inclinations of where to look. I'll probably investigate Lyme disease if this doesn't work. Cheers |
I am sorry I am late to reply to your last post.
I have two thoughts about your using Zyprexa. 1) This family of drugs are known causers of pituitary adenomas. (non-cancerous tumors). Someone with suspected endocrine problems therefore, may get a complication if they develop one of the tumors. Risperdal is listed as the most common cause, with Zyprexa following. The others are further down the latest list. 2) These drugs are know also for causing brain shrinkage. That is not something anyone needs or wants. Here is a link discussing that: http://www.madinamerica.com/2013/06/...age-an-update/ So in the short run you may feel a bit better for a while, taking Zyprexa, but in the long run you may be paying a price you would rather not pay. It is up to you to read up on these two subjects and decide for yourself. |
Hi mate,
Sorry to hear about your issues. I have very similar issues to you and was wondering how I can start a personal conversation with you, as very new to the forum! PM to let me how your doing as would love to know. All the best, Jamie |
Welcome Jimdimmer1. :Wave-Hello:
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Like I said on there feel free to add me on Skype @ "Almost.easy2" |
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