Dazed and confused

Dazed and confused

Postby member_38175 » Tue Jul 31, 2012 11:02 am

Over the last seven years I have been through a turmoil of issues and problems, diagnosis, false diagnosis, collapse of my health, collapse of my relationships, and feel like I am ignored and abandoned by the health care professionals who indulge in a mass shoulder shrugging with the comment that while you've got something we're not entirely sure what, so keep going and hopefully it will sort out.

My problems started before 2006 but the route to a diagnosis began in 2006 when at the GPs appointment for my diabetes in Bradford, West Yorkshire, I agreed to have students present during the appointment as part of their training. After my appointment the doctor discussed me with the students, and one asked about my central obesity, and whether I had been tested for Cushings. I get a call from the doctor to go back to talk about this and the nightmare begins.

I have been tested for pretty much everything you can name, and the upshot is I have exceptionally low testosterone, now treated with Sustanon 250 which you can't get hold of, some issues with my LH, FSH levels but not entirely sure what, I don't have Cushings either syndrome, disease, or pseudo although I might have that. I demanded an MRI in the end, I was convinced I had a tumour, after eight scans the first time and four the second time it has been determined I have a malformed posterior pituitary gland that is non-producing and would not affect sex hormones anyway. My testes are ok, no tumours, but there is something seriously wrong with my HPG axis resulting in testosterone levels around 5 at their lowest.

The dexamethasone suppression tests went on for ages, and proved utterly inconclusive, one test said yes, the next said no, the next said maybe, and so on.

While all this has been going on I've struggled with redundancy, flirted with bankruptcy, suffered a CCJ which affects my professional life, had my gall bladder removed, ling term unemployment, suicidal depression, anxiety, insomnia, and suffered from a complete lack of libido and also sexual function problems. I am also tired, so very tired all the time. I feel like I live in a limbo twilight world, the word zombie might be applied to me at times, I just seem to exist rather than live.

Everything combined meant my relationship with my wife and children(step) suffered to such an extent my wife cheated with other men. When I found out I was distraught that things had gotten so bad, and that I was in such a bad place I'd neglected my part of the relationship. The testosterone replacement therapy I am on is helping a little, my levels are now in the 15 to 20 range and my libido is back if not the full function. We're trying to rebuild our marriage, which is not easy and I am trying to rebuild the relationship with my kids.

God it's not easy, and oddly enough the recent problems have brought me back to going to church on a pretty regular basis, which is as much a surprise to me as to everyone else.

The single biggest help I've had came at my lowest ebb, when I was suicidal and had my plans worked out on how to do it without too much pain or inconvenience for anyone else, and mentioning it to the doctor led to help from the mental health team. For the last two years I've had Jungian therapy which has helped me to grow as a person, to retreat from the brink and deal with a lot of my issues, although I did retreat inside myself with regard to my wife and kids, which led to the recent issues there. I'd recommend the therapy to anyone struggling with complex issues.

My problem is that without a clear diagnosis I find it hard to move on with my life, I feel like I am in some kind of hellish medical limbo where everyone knows I have a problem, but nobody knows what, and nobody seems overly inclined to find out either. Is my diabetes a result of pituitary problems, or vice versa? Questions like that go on in my head, and I never seem to get answers other than maybe and we don't know. At times I feel like a medical student with my head buried in books and papers desperately searching for answers.

Is there anyone else out there who has been through similar things and might have some suggestions for further investigations into finding out what is wrong with me?
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Joined: Wed Nov 09, 2011 3:55 pm
Location: Hull, East Yorkshire

Re: Dazed and confused

Postby plum » Wed Aug 01, 2012 9:41 pm


i have recently met with the mental health care team here and the suggestion seems to be that the hormonal imbalance itself could be responsible for some of my depression etc.
not sure if this helps you at all, other that it might 'explain' why some emotional stuff seems a bit hard to explain or find an obvious cause for.

i share your feelings of being like a medical student as i used to carry graphs of my blood test results to each medical appointment....until my gp asked me to try and let go....it has been difficult but i have found it is possible.

what helps me? gardening.

good luck

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Joined: Tue Nov 09, 2010 9:41 am

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