Discussions By Condition: Medical Stories

Anybody like me? Help!

Posted In: Medical Stories 6 Replies
  • Posted By: Anonymous
  • November 9, 2006
  • 11:05 AM

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.
Muscle wasting.
Water retention.
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.
Large hands.
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).
Low libido,
Emotional stress
Fatigue,
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.
Dry skin
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.

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6 Replies:

  • I was doing further investigations over the web yesterday and by plugging in sugar craving and disease (I have craved sugar since aged 12) I came up with some thing called Syndrome X. Everything mentioned in my above initail posting is connected with Syndrome X (testosterone resistance, insulin resistance and so forth), so for the next couple of weeks will have this investigated, even if i have to travel to another country for tests.
    Anonymous 42789 Replies
    • November 11, 2006
    • 11:15 PM
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  • Have you got the results of the grouth hormone back? You have all the same symtoms I have and I am waiting for the results of the first round of tests that were done monday. What part of the country do you live in? There is a wonderful doc in Tn.
    tam4givin 19 Replies
    • December 8, 2006
    • 11:58 PM
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  • Hi Tam4givin,I look forward to the results of your Monday blood tests. Which tests did you have; ITT (insulin tolerance test) or a GTT? A one off blood for GH (Growth hormone) is not appropriate as the GH fluctuates considerable during the day.The GTT I recently fought for confirmed that I have insulin resistance syndrome (IRS), but the pathologist in his or hers infinite wisdom refused to send my bloods on for an essay of my growth hormone, except the fasting blood, saying it wouldn’t yield anything. I beg to differ. IRS interferes with GH and the two hour period of a GTT readings would indicate if mine were low at the very least. As it was, my fasting GH was of the lowest acceptable reading of .2. and my insulin reading was18 fasting, when it should have been below a 10.I live in the Northern Territory of Australia. I have to go interstate in January to see an endocrinologist as the endocrinologists here don’t want to handle my case as there is “nothing wrong with me” rubbish. I question what knowledge they really possess in the light of what I have found out about IRS and its very detrimental affects, so I am better going somewhere else. I have requested an ITT so I can find out about my GH and insulin like growth factor-1 (IGF-1), but I don’t know if this is going to happen.All I know is having followed someones advice to take L-Arginine oral powder to stimulate growth hormone and the IGF-1, that my muscle wasting has halted these past few days and for the first time in years I am experiencing the productive pain of muscle development following any exercise (in my forearms from lifting things). This is far different for the lactic acid burn I was getting in my back even when I lay in bed not moving accompanied by muscle spasm. I am just feeling stronger in general. This is why I feel I must also have GH deficiency. In a weeks time I shall go to the gym if I am confident I am not wasting and do a light work out and see how many ‘good’ aches I have the next day. :D I just need that ITT to put the final piece of the puzzle together.All the best.Agape,searchingsam
    searchingsam 54 Replies
    • December 9, 2006
    • 05:35 AM
    • 0
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  • hi there, you need a general endocrine workup, not just to look at growth hormone but also cortisol, sex steroids etc. Lots of medical conditions can cause your symptoms and your history puts you at extra risk for some, and they need to be treated if present. If possible go to an endocrinologist preferably in a big city teaching hospital and tell them you need a full workup. Good luck, sorry I don't know anything about the Australian health system.
    Anonymous 42789 Replies
    • December 10, 2006
    • 01:00 PM
    • 0
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  • I do not know what test the grouth hormone one was, how would I know? It came back ok. Guess what did come back bad? My HTCH abd Cortisol were both LOW! I went today for a follow up test for it where they drew my blood then gave me cortisal waited an hour and then drew blood again to see what hapened. I am so perplexed with all this. Low ans high some times has the same symtoms! I am praying for wistom of what the Lord wants me to do! How are you doing? I found another person in the UK who had all the Acromegaly sighns but never tested high to any of the tests yet had a tumor removed and got better. Have you gone to the Cushings-help site? It is not just for cushings. Thank you!
    tam4givin 19 Replies
    • January 6, 2007
    • 07:59 AM
    • 0
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  • I just started T a couple of weeks ago. I've noticed a couple of subtle effects so far. So, I don't think I'm "like you," but believe me, I sympathize.Have you looked into/been tested for Androgen Insensitivity Syndrome? That could explain your lack of effects from taking T.Also, the Gender Centre in Sydney is supposed to be good. I just looked it up, and it's fairly far away from you, but there's a good chance they could recommend some better doctors than you've seen so far. I'd call them and see what they suggest.Best of luck with everything,Chris
    Anonymous 42789 Replies Flag this Response
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