Hi guys!
Wow, that's a lot to address. My head's already starting to spin again.
@ Flex
I have been tested for ADHD and it turned out that on those test on the computer where they test attention,impulsivity,short term memory I all sucked.
I either made too many mistakes compared to others in my age or I was too slow.
I do believe that I have ADD without hyperactivity. I read a lot of stuff about ADD and also posted stuff on ADD forums where I simply summed up ALL my symptoms which
I notice about myself and many people were like "I have exactly the same". Unfortunately ritalin and wellbutrin don't help me. They don't help me get a clear mind which is most important
to me. And amphetamines aren't allowed for adults where I live. This is a huge problem. I'm not sure if my insurance would cover amphetamines. Another issue would be mixing amphetamines
with antidepressants. This can also be risky cause amphetamine releases serotonin and when you mix then with serotonergic antidepressant you can get a serotonin syndrome. This seems rare
but it's frightening.
I am impatient and also can get really angry when I argue with people. In such situation I also often say things which I later regret and then wonder why I couldnt just contain myself.
@ VerdeGo
I'll look if I can buy glycine via ebay. Do you know how much of this could safely be taken and if there are any interactions with prescription drugs like antidepressants?
I already tried stuff like NAC but I dont notice any benefit. I also tried Memantine. I was hoping it might help with feeling irritable and restless but I dont think it did and then I stopped after a while.
I also wasnt sure if it affected my memory or not and this worried me. I have been suffering from feeling overwhelmed whenever I am exposed to things which worry me or simply stress me out
for years. I also tried to describe this to my pdocs but they didn't really seem to care much. I don't know what this is and what causes it but it's totally disabling. There are days where I feel at unrest
the whole time and this also affects how I'm able to function. On such days I feel totally passive and cant really make decision or focus on studying. I just made a thread about this in mental health.
It totally upsets me that doctors don't really seem to care about symptoms it's like every depressed patient gets the same drug suggestions no matter what the symptoms are.
@ AlmostEasy
Low Testosterone:
My current regime is testosterone depot 250 mg injections every 2,5 weeks which I get from my intern.
In Europe HCG and AIs are not used for men and not for TRT. I already argued with my endo there is NO way to get it from him.
He also has no clue about this. I noticed it by what he told me. He said if I wanted to use HCG I would need to inject it daily which isn't true.
The only choices I have when it comes to TRT is: 1) Topicals [tried various gels didnt like them also got skin itching and rashes]
2) Testosterone depot 250 mg every 2-3 weeks [also a bad option cause of fluctuations]
3) Nebido [supposedly gives you stable levels for 10-12 weeks but Nebido is available as Aveed in the US and it comes with tons of warnings about side effects and pulmonary embolism,
I am afraid of this stuff I don't think I could get it cause I also read many reviews from patients who said that even though their doctor injected slowly and carefully they still got embolisms!]
Basically my hands are bound unless I buy HCG or Arimidex on the black market.
I am very unhappy with TRT. It doesn't make me feel better and my testicles are tiny now.
I thought if I went on TRT I would gain some muscle mass and strength cause I'm skinny/fat but not so.
I also do not notice any changes libido wise but depression could also play a role.
I have been getting the depot injections since December and they do not produce stable and reliable results.
For example I had my "peak levels" measured various times. They usually occur 7 days after an injection but at different tests, which all were done 7 days after an injection,
my serum T also varied quite a bit. And also my E2 levels are problematic. In December I had E2 tested after 7 days to see how high E2 gets during a Testosterone peak and back
then I had 25pg/ml which was good. But now in March suddenly I had much higher E2 levels of 42pg/ml!
This is a problem cause now I cannot even tell why I dont feel better under the injections.
It could be because of 1) too strong testosterone fluctuations 2) too high E2 levels.
But since I cannot get an AI it doesn't even make sense to contact my endo because of this. He would simply say that E2 is still in the normal range and that it's all fine.
I had a pituitary MRI which showed nothing.
I simply know that already at age 20 my serum T was borderline low. Since I have always been skinny and weak and had little facial hair I always assumed something isn't right
and this confirmed it.
Have also been tested for klinefelter syndrome which was negative.
I also have female fat distribution.
Over the years I kept track of my T levels and usually it was always the same. Low serum T, low LH.
I had 2 different LHRH tests which were normal this means that LH release could be stimulated by the injected agent but this doesn't change the fact that I simply have low LH.
My testicles are not the issue.
I think the best result I had in all the years was that my serum T was in the middle of the normal range. I never had it that I had high T levels.
But the endocrinologists I have been to all told me I'm fine and T is still in the normal range and so on.
Thyroid Antibodies:
I started taking T4 in 2012 when my intern said I'm latent hypo. Back then my free thyroid hormones (t3,t4) were okay but my TSH was high a few times. Sometimes above 3 or 4.
I thought maybe getting on T4 could help with depression but it didn't. But I kept taking 100 mcg T4 since then.
Last autumn I saw another doc and he told me to move to 125 mcg T4 and add 10 mcg T3 because my ft3 levels were rather low around 50% of the range. I asked if this could mean that
I don't convert enough T4 into T3 and he said yes. But I cannot say I feel better or less fatigued since I moved to 125 mcg T4 + 10 mcg T3.
Over the years when I went to endos I never had any antibodies, also not in 2012 when my TSH kept getting higher.
But then in 2014 suddenly I had elevated TR antibodies in one test which was done by the endo.
When I found out about this I had TR antibodies measured again at my intern 3 weeks later and they were normal again.
Then I went to the other doc and he measured TG antibodies and they were also elevated. He said that I might have Hashimoto
and told me to avoid iodine. He said when somebody is hypothyroid then the reason for this is often an autoimmune disorder.
Join Pain (Unprovoked)
I have been noticing changes in my body since 2003.
It first started with cracking knees or even cracking bones in my toes when walking.
When to orthopaedists and told them my concerns and they didn't really do much or found nothing.
I exercised in the gym from 2005-2007 but then had to quit cause I had too many aches and pains.
I got knee pains and shoulder pains and also muscles and tendons started to hurt. I felt like I am simply too fragile
to work out it was totally depressing and I really didnt lift heavy cause I have not much strength.
Already in 2007 I had a knee MRI cause of knee pain which showed nothing. I couldnt even squat down without pain and still cannot.
Also been to rheumatologists in 2007,2011,2013. They all found nothing.
I have now been having pain in my knee since December. I cannot even bend the leg without using any force or pressure without pain.
I got another knee MRI in December which also showed nothing and yet the pain is there!
It's totally frustrating.
I also can easily can pain my other parts of the body without much effort. For example wringing out a wet shirt causes pain in the wrists and forearms. It's simply absurd.
Sometimes something hurts and I have no idea why cause I did nothing to provoke it. One time I used my hand to support myself, the same posture when you do pushups only that I didn't
do any pushups I only supported my body when I was sitting on the ground with one hand. And on the next day I suddenly couldn't even move my fingers anymore because of this! I had pain in the hand and thought I must have seriously injured myself and then got a X-Ray but it was normal. The pain then went away after a few days.
But my point is simply that this isn't normal. My orthopaedist probably doesn't even take me seriously anymore cause of my frequent problems.
I also have pain in both shoulders and they hurt at night, something which I also did not have until 2 years ago.
My orthopaedist told me that I should get physiotherapy for the shoulders cause I have a bad posture. This is true but I still dont understand why I have the pain now
and not in the past. Overall it simply gets worse.
The rheumatologists did a few Lyme tests and results were a bit confusing. I also read that Lyme tests are not reliable.
I had 2 Elisa tests. In 2008 it was negative.
Then in 2013 I had another Elisa test and a Western Blot. Now the Elisa was suddenly "borderline" while the Western Blot was negative.
The rheumatologist said that the Western Blot is better and that since it's negative there is nothing to worry about.
I also do not know any doctor where I live who specializes in Lyme disease. I already contacted a Lyme organization and asked for contacts but they couldn't really
help me. There is only 1 doctor who claims to be a Lyme expert but when I googled him I read some bad reviews from patients who felt let down by him. I don't know if
he's good or not. When a doctor already has bad rewiews then I dont really want to check him out.
Depression/Anxiety
I don't really know what a better diet would look like. I feel pretty helpless.
For example in the morning I wouldn't know what to eat other than the stuff which I always eat which is a shake which consists of oats and whey protein.
I depend on routines. Doing different things all the time requires too much thinking and planning on my part.
That's why I needed foods which are healthy and can be eaten daily. But the problem is there are healthy foods which still cannot be eaten daily. For example
beets are healthy but eating them too often might also not be good.
Or what if for example foods which I buy, I also frequently by frozen veggies cause they are easy to prepare, contain pesticides and then I rely on the same foods
all the time then this would also be unhealthy. Things like these simply worry me and since I have OCD I obsess with it.
Often times when I was in the supermarket I simply did not know what to buy anymore cause I saw possible risks everywhere. Even if the foods are good then what about
xenoestrogens in the plastic or BPA in cans? It's simply totally overwhelming.
I really would like to somehow change things and try something different but as I said I'm clueless somehow. On my own I have a totally hard time implementing change.
I also thought about getting a juicer or getting into sprouting but then I'm always reluctant and don't really know how to do it and then I dismiss these ideas.
Low Vitamin D3
I usually take 20.000 IU every 7-14 days whenever I think of it. My levels are also better now but could still be a bit higher that's why my doc said I should take it every 7 days.
Drug use
Benzos only rarely before medical exams or scary situations
I take no prescription drugs regularly except the antidepressants I tried so far which were:
Wellbutrin
Anafranil
Remeron
Lexapro
Tianeptine
Cymbalta
Agomelatine
Ritalin (for ADD, doesn't really work)
Memantine (prescribed off lable for brain fog/irritability)
I can't say that any drug made a noticable difference.
drinking
I've been using alc as sleep aid since 2008 daily, trying to get off it now cause it's not healthy and also bothers me.
I usually drank like 1 beer or 1-2 glasses of wine before bed to fall asleep faster. Without alc I have a hard time falling alseep
cause then I think about depressing things.
conditions
I know that I have hyperstretchy skin. Been to a few dermatologists. One scared me and told me it could be a genetic collagen defect like EDS
but another one said it's still in the "norm". Not sure though. But I'm not hypermobile. Also went to an angiologist and got ultrasound of the major
blood vessels and they were normal so I thought I leave it at that.
I also have pretty visible vertical lines on the fingernails and also white spots. Asked a dermatologist what this meant and he didn't know.
I also have been noticing for years now that I am getting really sick looking kinky hairs on my head. My hair is usually straight and these hairs look abnormal. They
actually have a look and texture to them which is like pubic hair!
Been to a few dermatologists cause I worried that this could be something more serious but they didn't take it seriously or simply said that's normal or age related
which is BS. If this was age related every senior would have a full head of kinky hair.
I also have keratosis pilaris on the upper arms and also on other areas of the body.
I also have been noticing a tendency towards dry skin and ingrown hairs especially on the forearms since 2011. I don't know why I suddenly have this
cause I don't expose myself to much water and yet I have dry,wrinkly skin.
I also have issues with receeding gumline. I also gnash with my teeth at night which is why I have to wear such a plastic thing to bite on.
I also frequently have problems with burning eyes and my vision also gets worse especially when I have to do work on the computer or read something.
I have eye drops against burning eyes but they don't help. When I apply them before going to bed I feel like my eyes are even dryer the next morning.
I know from lab tests in 2009 and 2014 that supposedly I have too high oxidative stress.
When I found out about this in 2009 I started using more supplements. Before that I only took 1 gram fish oil per day and nothing else.
In 2014 I had the same test repeated and even though I was already taking a daily multi, 100 IU vitamin E, 500 gr Vitamin C and spirulina the result
was still that my oxidative stress is too high and antioxidant capacity too low. The doc I went to does these tests in his own lab and I dont know how reliable
this is.
I also ran 2 other tests done by a different lab. One was for "nitrosative stress" which was positive. Turns out that I obviously have elevated nitrosative stress.
This seems to be something rather extraordinary cause my intern didn't know what this is.
The doctor who ran this test also didn't know much about it or what to do about it. He simply told me to use more vitamin C and add ALA to the mix.
I googled nitrosative stress and found some concerning material obviously this is something which can cause a lot of different issues in the body.
I was also tested for a condition called Kryptopyrroluria. This was a urine test. And according to the results I also have this stuff.
But again the doctor couldn't really tell me much about it. He said people who have this have low B6 and zinc levels cause they excreet too much.
But I had zinc and B6 measured in the past and it was not low. So I really don't know what to think about this.
http://www.aonm.org/kpu
family history of disease, STD's?
My father also has many pains in joints especially fingers,knees,hip. He also went to rheumatologists and they found nothing but he's also 40 years older than me
and in my age he was doing much better!
My brother smokes and lives rather unhealthy and I know of no major health issues which he has.
When did this start?
I remember at 18 I noticed that I was sensitive to light. But I cannot say if this is normal or not. I only know that I noticed I cannot even look at the sky on a cloudy day with eyes open.
Til age 20 I was relatively okay. I already suspected hormonal issues because of being weak and having little facial hair but that was all.
Then at age 20 I noticed the first lipomas and also got seborrheic dermatitis which I have been having since then.
At age 21 I first became aware of the visual disorders, back then I only had visual snow. No blue field entoptic phenomenon, this started at age 26.
At age 22 I noticed the first cracking joints.
Around age 26 I had to quit working out because of being too fragile and having too much pain.
Around age 27 I noticed that the floaters had gotten a lot worse.
I'm 33 now.
I would say it's progressive. Over all the years I simply noticed more and more health problems.
Try to list out (neatly) everything you've ever tried (supplements/medications) that has helped/hasn't helped.
I cannot really name many things which clearly worked or helped. It's the same as with drugs. Usually I notice no difference
which is disappointing.
Stuff I tried in the past:
Astaxanthin 8 mg: couldn't really tell a difference or felt less fatigued
Evening Primrose Oil with GLA: not sure but I have the impression that during the short times where I tried EPO my joint issues got worse which I don't understand cause officially
GLA is supposed to be antiinflammatory, but due to this I always stopped taking it after a while
Flaxseed oil: tried this one time a few years ago and the next day I felt really bad and then I stopped. I felt totally fragile and my body was hurting. Dont know if this was a coincidence
but I didnt dare to keep taking it.
Ritalin for ADD: at best it gives me a little boost but it doesn't make me calmer or more concentrated, at higher doses above 20mg it also creates too many side effects
---
Stuff which I take now or have been taking for a longer time without noticing any benefits either
Fish Oil 1 gram daily, have been taking this for many years
High dosed B complex
Multi Vitamin
P5P 50 mg
Metafolate 400 mg (thought this might help with depression but does not, maybe also required higher doses)
Spirulina (only take it cause supposedly it's a super food but don't notice any benefits)
----
That's all I can say for now.
If you want lab reports with numbers and all that then I'd have to search them and type them into the computer. This will take quite a lot of time.
Tell me what exactly you need to know in more detail. I don't know what kind of stuff would make sense to type down and what not.
I mean typing down 8 different labs reports from the past few years where I all had low T and low LH is probably not that helpful.
Edited by mandible, 19 April 2015 - 12:01 AM.