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HRT Side Effects

Why as a transsexual was I never made aware of the possible effects that HRT would have on me? I was put onto the hormone regime with no explanation of the side effects/symptoms that I am now encountering. I have had to compare my feelings with pre and post menopausal real Women and other research.

If these symptoms were known as per "Hormone Therapy-General Outline" on the web, why was I not instructed? It would have given me an insight into what to expect, not have to find out after the onset of these symptoms. I am producing Prolactin naturally and was told initially "Men do not produce this hormone" yet in the Harry Benjamin Standard of Care, latest version, it is mentioned on page 11 . . .

"A pretreartment Prolactin level should be obtained and repeated at 1, 2 and 3 years. If Hyperprolactemia does not occur during this time, no further measurements are necessary. Biologic Males undergoing oestrogen treatment should be monitored for Breast cancer and encouraged to engage in routine self-examination. As they age, they should be monitored for Prostatic cancer."

Comment by Dr John Delahunt - I agree with the advice but am not worried about prolactinomas : in women a raised prolactin inhibits periods, in men it reduces libido, in both it predisposes to breast milk ; it does numerous alternative things in individual animals but, essentially, does no harm.

Prolactinomas, benign pituitary tumours producing prolactin, are generally large in men and can spread locally; they are more common in women, perhaps with the same incidence of large tumours but with very much more very small tumours. They are very responsive to drug therapy. If necessary they can be reduced in size by surgery and/or radiotherapy : I have never seen anyone die of a prolactinoma.

In Hormone Therapy, Prolactin is put as one of the tests required before actually embarking on HRT along with -Liver function-Kidney function-Testosterone levels-Oestrogen levels. My Prolactin was at 1500 and was down to 979 at the test that last registered it.

Comment by Dr John Delahunt - Generally low prolactin values relate to small tumours or some other explanation, not related to tumours at all : time of sampling, different forms of prolactin in the blood. A value of 50,000-100,000 is high, 20,000 very significant. Most tumours are associated with values over 2,000

Tests have not been done for several months, Why is this so?

I intend to ask this question at my next meeting with my Endocrinologist. Prolactin is produced during Puberty to form the Breasts, It is also produced for lactation in pregnant women.

Comment by Dr John Delahunt - Oestrogens and progestergens give breasts, prolactin give milk.

Statistics show 30% of the general population have Pituitary Adenoma, a non-cancerous benign tumour of the Pituitary gland at the base of the brain.

Comment by Dr John Delahunt - My figure is 15% by the time of postmortem - ie in the elderly. Most endocrine glands have this incidence of small tumours in the elderly. The numbers cumulate as we get older. Prostates for the men and breast cancer for the women are the worst.

We need to know there is a risk of a large prolactin tumour before starting therapy and to know if the prolactin goes up during therapy. If so, and we adjust therapy when this is required, there are no problems. I imagine oestrogen therapy for gender reassignment will trigger the small tumours of women, there is a local predisposition. I measure prolactin in every transexual on oestrogen and haven't seen a problem yet. Perhaps I have had some mildly raised prolactins, but there hasn't been a difficulty I can recall.

But, I agree, these are questions for Kathy's own doctor.

Most are unaware of it, and it never causes a problem. This gland controls the sex hormones, body temperature, metabolism, calcium in the blood, and to and from the bones. What symptoms are seen depends on which part of the gland the tumour is located in. With HRT these can become quite apparent. The most common is raised blood Prolactin levels in response to Oestrogen intake. In Transsexuals if large doses of an Oestrogen hormone are given {Premarin and Estigyn are two, plus some who are put on the Pill, is the pill sufficient for the change?) in the hope of increasing breast size or speed of breast development they can often have the opposite effect, and can cause lactation ranging from minor nipple discharges to full on "need nursing pads" type milk production. This is bothersome and embarrassing. If not controlled, excessive Oestrogen levels can lead to eyesight problems by causing the tumour to grow putting pressure on the optic nerves and could lead to eventual blindness. A doubling of the blood Prolactin levels can mean a doubling in tumour size. This is one of the less common problems that can occur.

Another common problem with over use of Oestrogen is the possibility of blood thickening and clotting. This can be a significant problem that can cause thrombosis, varicose veins and even strokes. You may also encounter symptoms of Menopause, Irritability, Emotional outbursts, General emotional instability, Spontaneous crying, Hot and Cold Flushes. At present I am experiencing all of the above and am only coming to terms with the problems because of talking to my Lady friends. I also suffer hard nipples, sensitive nipples and breasts and itchy breasts that at times appear swollen and painful to touch. This has been going on for longer than the 2 or 3 months in which it is reckoned these feelings subside.

There can also be varying degrees of depression, bouts of unexplained crying similar to "Baby Blues" which women may suffer after giving birth. I liken this to the "Post Operative regret Phase".You have all the redistribution of body fat and hair to contend with. Fat moving from tummy, back, arms and shoulders; to the thighs, breasts, hips and bottom. There is usually some weight gain associated with this, which is harder to get off than before, and a general rounding of the body into a more Female shape is quite noticeable. Upper body strength diminishes and voice may also change becoming noticeably higher. If taking Androcur some notice a change in fingernail quality, which become brittle and peel, also the hair can become dry and brittle.

If all of this is known then we should be informed of these possible consequences caused by HRT. As far as I can ascertain, no one that I know who is either Pre or Post operation have been made aware. We have in the main found out ourselves if we are predisposed to do some research.

At present I am at both ends of the scale as I see it, being both into Puberty and Menopausal. I am only now finding out what it all means, as my Prolactin was found to be pumping out in 1997 after checks of my Pituitary in 1998 confirmed no tumour. The Prolactin worked its job perfectly, and my entire body started to change. Breasts started to grow, skin texture changed, musculature altered, weepy, softer nature, but no one could explain why, other than try Male HRT, which did not work. It was then decided to "go with the Female hormones" in 1999 and since then I have changed dramatically and did not go onto Female HRT until March 2001, as we wanted to see what my natural Prolactin production would do. From March 2001 there have been more symptoms as this is an introduced hormone, not made naturally as up until then. I had SRS in November 2001 and am extremely happy with my new self, but must admit to the odd occasion recently of wishing to end it all because of all the symptoms and effects they are having on me.

It is hard enough for real women to come to terms with their mental and physical changes during menopause, so it must be doubly hard for us to come to terms with all of this They have to come to terms with Puberty as well, but at different times. With us it seems all in one, no wonder we tend to flip out. I will survive and not become another Transsexual statistic, but now believe I know why so many do opt to end it all.

Because of the lack of understanding on my part and the lack of Documentation, Research and Education on the part of the professionals, I have been on the brink several times recently, with no access to Professional help available when required. I have to wait 1 or 2 months, could be dead by then. As far as I know there are no counsellors for my problems, I find this appalling and quite unacceptable!

This is not good enough, we are not Guinea pigs, but Human beings attempting to find our true self. When if ever will this situation alter.

What has happened to "Duty of Care"?

With the plethora of litigation and the very high cost of insurance cover, can "Duty of Care" and explanation of how drugs will affect people not be addressed?

Why is there not a more responsible approach to all of these Side affects/Symptoms?

It will not only save lives, but also cause less problems and possible future litigation will be decreased.

It would appear that neither the Harry Benjamin or the Australian Standards of Care are being observed. Is it too much to ask that this situation be corrected and full explanations be given to all possible Transsexuals in accordance with the afore mentioned Standards?

Addition

It would appear that there are 2 measuring devices to arrive at Prolactin levels. One is where the Normal level is 500 and can go to 100,000 if there is a severe tumour of the Pituitary. The other is much lower with the normal level being 15-20 and then upwards if there is a tumour of the Pituitary. It would appear that I have changed from the first measuring device which gave me a maximum reading of 1500, so was 3 times over normal. The new reading is 38, which is about twice the normal.

I find it totally confusing that there can be 2 measuring devices and this is what has caused my concern at the way the readings have dropped. Now it has been explained I can live with the situation. However it has still not :
1 - Explained why I developed a Female shape without Oestrogen for 4 years, when supposedly only pumping out Prolactin.
2 - Why have I been continually told that Males do not produce Prolactin, when all the evidence and Standards of Care point to the fact that we do.

Answers to these 2 points would be much appreciated



Changeling AspectsIn affiliation with Agender-(Aust) & Transbridge-(Townsville)

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