Hi, my name is Sam.
Firstly, I would like to say that I am not a steroid abuser and never have been. Secondly, I am not a diabetic, nor do I have a family with any history of the disease. Thirdly, I do not have any known tumours that may be causing my health problems. And fourthly, I am not a hypochondriac.
I am a transsexual, a female to male (FTM), born biologically female but have always known I was a male in-between the ears, who underwent gender reassignment six years ago. My health problems are unrelated to my transitioning.
A very good friend suggested I post here and to other health sites. I have already posted to some non health sites to which I am a member who have a similar life situation but not same health issues, but non of the hundreds of people I am in contact with, as well as the endocrinologists they are connected to, have ever heard of the likes of my problems.
So may be someone out there may have some suggestions or might have same problems. In 1991 it was suggested I had Cushing’s syndrome, but this was later dismissed in 1996 or there about. But no further tests were conducted due to circumstances too disturbing to relate.
My symptoms that started manifesting around aged nine, but came to the front more in 1991, have taken a really bad turn for the worse due to time taking its toll and being refused medical help these past 11 years due to one very influential and self opinionated doctor, I am now 37 and seek help outside the traditional medical arena and have had to go world wide on the net. I was born with benign hyper mobile syndrome BHMS (formally eds type 3). Therefore, hyper mobile in every joint (but this was not a problem until aged nine when I could no longer sprint and jump up and down without spraining my ankles; joint weakness started when puberty hit and it has been all down hill since).
Symptoms that mostly manifested near 1991 and have now dramatically intensified:
Weakness of every joint.
If I move quickly it hurts as though I have no shock absorbers; pain can be best described as the likes when an ankle is sprained.
Inability to loose weight unless nearly starve myself. (was 58kg until I was 21, then climbed to 84kg, but have dropped to 78kg since I don’t eat much any more these past four weeks).
Change in tissue structure. Lumpy, sandy or stringy tissue.
Skin feels bruised if pressed, particularly in the leg tissue. I used to bruise easily until hormone treatment with testosterone and removal of my ovaries for my gender reassignment. Now I just feel like I have bruises under my skin as though my nerves are supersensitive.
Photosensitive; look sunburnt on the back and face and become very red in those areas with the slightest exposure to sun.
Mild hursuitism diagnosed 1991. Pre transition.
Sometimes menstruation wouldn’t stop, so had to take pill on and off for over ten years.
Had severe PMT until started taking testosterone for my gender reassignment.
Had ovaries removed six years ago for gender reassignment.
Web veins in legs
Elastic skin mostly of the hands.
Went from perfect vision at aged 13, to wearing glasses in a matter of two weeks.
Teeth started to decay around 21 yrs of age, even though I took good care of them.
Sinus trouble since 12yrs of age, and nothing improves the condition.
Fractures of foot bones by only walking. (Apparently don’t have osteoporosis or arthritis).
Stiffness of joints.
Can’t sit still and feel restless all the time, but too fatigued to exercise.
Can’t exercise or injure ligaments and tendons; can’t even swim.
Was doing well with pilates for two years, but now I can’t even do this properly and my instructor shares my concern.
Muscle cramps and spasms in the back.
Constant cravings for sugar since 12 years old.
Suffered depression since I was four, but dramatically worsened from aged 12.
Past few weeks have experienced an increase in saliva production that has been so unexpected at times that I have choked on it.
Have also developed a strange sensation on my tongue, hard to describe, it doesn’t tingle or buzz, just a weird feeling I can describe. May be the feeling like being slightly burnt when eating food that was too hot.
Now developing a cough during different times of the day as the production of mucus from sinuses has increased and interfering with my breathing. This is not a viral thing as it has been some weeks and coincides with my sudden down spiral of health, and it vanishes for some hours and then comes back periodically.
Though I have been taking the standard amount of testosterone (t) for Female to Males (FTM’s) undergoing gender reassignment these past six years, I have not responded to the testosterone. I have a thick beard, but as mentioned I was diagnosed with hirsutism in 1991 and the t may just have helped it along.
I have not developed muscle; I just continue to waste away like I had been before the t.
Nor have I experience clitoris growth that comes with testosterone treatment in female bodies.
Did not get acne that most FTM’s experience as the initial months of hormone treatment is like going through puberty.
Eleven years ago insulin was administered into my blood system, but this did not drop my blood sugar level, nor did a second shot of insulin result in any blood sugar drop. No further investigations were conducted due to the conducting doctor being convinced I was a steroid abuser though I repeatedly said I had never taken steroids. I have not been able to access further investigations because of this doctor’s damning verbal report to other doctors. Nor have I been able to prove that I am insulin tolerant as I am not permitted to have an ITT test, as the relevant doctors who have authorization to perform this test do not wish to handle my case because I am a transsexual and acknowledge only the info provided by the above mentioned doctor of eleven years ago. They do not wish to separate my health problems from my gender issues.
About four weeks ago I thought about taking amino acids. But while doing some investigations into amino acids and their affects on the body, I stumbled upon the mention of growth hormone and its function in and influence on the body. This followed an explanation of what happens to an adult with growth hormone deficiency (GHD) and I literally froze. I don’t know if I have this condition of GHD, all I know is I have all the symptoms, more than the symptoms the ‘experts’ thought I had from incorrect assumption of Cushing’s syndrome. It also stated that the best way to confirm a GHD is to have an Insulin tolerance test or ITT. I can not have an ITT as the doctors who want to help aren’t authorized and those that don’t want to help have the authorization.
I want to know if insulin tolerance and growth hormone deficiency are linked and could all this explain why I suffer the health problems I have had slightly since puberty and significantly since 1991, and may also explain my being unresponsive to testosterone.
I did have three lots of bloods taken over two hours, four days ago that were sent away for reading of growth hormone level. I was given a glucose drink and this test might be the closest thing I am going to access to indicate I may have a GHD problem. I am still waiting on the results. Regardless, I need info on any of the above.
Regards muchly and urgently.