Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 Estradiol reference range goes upto a maximum of 150pmol/l. My level is 423pmol/l. I think this would mean it was around 115picograms in US terms. I am trying to persuade my endocrinologist into treating. I am also trying to get put on Growth Hormone therapy. All this is VERY hard to impossible in the UK. I pass the US test for GH deficiency which is a level of 5 or below (not sure of the ref range) I am about 3.2, but in the UK they do not treat GH deficiency and have renamed the condition Severe Growth Hormone Deficency and are refusing to treat what they term as boarderline levels. In UK terms/levels my GH via an insulin tollerance test was 11.5 and they only treat 9 or below. I had a baseline test 4 years prior and my result 4 years earlier was 44, so my GH in UK terms has gone from 44 to 11.5 in 4 years. So there is ongoing damage to the pituitary according to my endo, but they do not know why. I have osteoporosis in my spine and a bone density of minus 2.8 and am only 34 years old. I have very bad back pain on a daily basis and have to take pain killers round the clock. Because of the very high estradiol and the lack of GH I am completely exhausted and pretty much live sat in a chair like a 90 years old. I have been suffring and trying to obtain correct treatment for over 4 years now and I have tried everything from private practicioners to many differing endocrinologists in the UK. My bone density went from minus 1.5 to minus 2.8 in two years and the last BD test I had was about three years ago so I suspect now that the bone density might be minus 3 or below. Seem a crock doesn't it? Opinions welcome... Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 I hope the forum doesn't throw me out for this one but if high school kids and bodybuilders have such an availability to testosterone and other drugs........ I went to a bodybuilder web site and they were selling testosterone, Arimidex and other drugs no prescription required. Going outside a doctor's recommendations is not good advice. Then again, if you're suffering and not getting help...... You'll have to decide that on on your own. Bodybuilders think they have testosterone use down to a science but I wouldn't call what they do as science. They may take 10 to 50 times normal dosing. But there is a complete subculture out there dedicated to (illegal) testosterone use. They probably get their stuff from China, Mexico or Eastern Europe. I doubt it's well controlled. You won't reallly know what you're getting. From: chis_az <chis_az@...> Subject: What do you think of this? estradiol level etc Date: Thursday, June 26, 2008, 11:54 AM Estradiol reference range goes upto a maximum of 150pmol/l. My level is 423pmol/l. I think this would mean it was around 115picograms in US terms. I am trying to persuade my endocrinologist into treating. I am also trying to get put on Growth Hormone therapy. All this is VERY hard to impossible in the UK. I pass the US test for GH deficiency which is a level of 5 or below (not sure of the ref range) I am about 3.2, but in the UK they do not treat GH deficiency and have renamed the condition Severe Growth Hormone Deficency and are refusing to treat what they term as boarderline levels. In UK terms/levels my GH via an insulin tollerance test was 11.5 and they only treat 9 or below. I had a baseline test 4 years prior and my result 4 years earlier was 44, so my GH in UK terms has gone from 44 to 11.5 in 4 years. So there is ongoing damage to the pituitary according to my endo, but they do not know why. I have osteoporosis in my spine and a bone density of minus 2.8 and am only 34 years old. I have very bad back pain on a daily basis and have to take pain killers round the clock. Because of the very high estradiol and the lack of GH I am completely exhausted and pretty much live sat in a chair like a 90 years old. I have been suffring and trying to obtain correct treatment for over 4 years now and I have tried everything from private practicioners to many differing endocrinologists in the UK. My bone density went from minus 1.5 to minus 2.8 in two years and the last BD test I had was about three years ago so I suspect now that the bone density might be minus 3 or below. Seem a crock doesn't it? Opinions welcome... Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 I know how you feel with your E2 this high mine was way over 90 when I first did labs on it and my GH was very low after getting my E2 down on arimidex doing .5mgs everyday all the things like Panic Attacks, Rashes,ED,loss of libido,enlarged Prostate, fatigue and could not stand the heat of summer got better. My Testosterone and GH levels went up I feel this happened because I became more active and the Testosterone was not bound up anymore. I am told and Dr. nco at MESO said this in a number of posts the last thing you treat is GH. You can order LiquiDex from this site I know they send to the UK some of the guys at MESO ordered it. http://www.ag-guys.com/arimidex-vs-aromasin.htm From what I here it works dam good and it's better then the pills because later you would need to cut them in to 1/4 parts. This is liquid and you can tell when your at the right levels when it comes down night time and morning wood comes back so strong it wakes you up. It this stops then your going to low this is when I would stop the Arimidex and when the wood came back I went back on it but cut the dose keep doing this until I found what works. With labs this works good to gage by your wood. Co-Moderator Phil > From: chis_az <chis_az@...> > Subject: What do you think of this? estradiol level etc > > Date: Thursday, June 26, 2008, 12:54 PM > Estradiol reference range goes upto a maximum of 150pmol/l. > > My level is 423pmol/l. > > I think this would mean it was around 115picograms in US > terms. > > I am trying to persuade my endocrinologist into treating. > > I am also trying to get put on Growth Hormone therapy. > > All this is VERY hard to impossible in the UK. > > I pass the US test for GH deficiency which is a level of 5 > or below > (not sure of the ref range) I am about 3.2, but in the UK > they do not > treat GH deficiency and have renamed the condition Severe > Growth > Hormone Deficency and are refusing to treat what they term > as > boarderline levels. In UK terms/levels my GH via an > insulin > tollerance test was 11.5 and they only treat 9 or below. I > had a > baseline test 4 years prior and my result 4 years earlier > was 44, so > my GH in UK terms has gone from 44 to 11.5 in 4 years. So > there is > ongoing damage to the pituitary according to my endo, but > they do not > know why. > > I have osteoporosis in my spine and a bone density of minus > 2.8 and > am only 34 years old. I have very bad back pain on a daily > basis and > have to take pain killers round the clock. > > Because of the very high estradiol and the lack of GH I am > completely > exhausted and pretty much live sat in a chair like a 90 > years old. > > I have been suffring and trying to obtain correct treatment > for over > 4 years now and I have tried everything from private > practicioners to > many differing endocrinologists in the UK. > > My bone density went from minus 1.5 to minus 2.8 in two > years and the > last BD test I had was about three years ago so I suspect > now that > the bone density might be minus 3 or below. > > Seem a crock doesn't it? > > Opinions welcome... > > Chris > > > > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 Hey - you might consider making copies of 2 files that are in the files section (Letrozole Study and Arimidex Study). Both are medical studies and should carry some weight with your doctor on the benefits of reducing high E2. Arkansas From: chis_az <chis_az@...> Subject: What do you think of this? estradiol level etc Date: Thursday, June 26, 2008, 11:54 AM Estradiol reference range goes upto a maximum of 150pmol/l. My level is 423pmol/l. I think this would mean it was around 115picograms in US terms. I am trying to persuade my endocrinologist into treating. I am also trying to get put on Growth Hormone therapy. All this is VERY hard to impossible in the UK. I pass the US test for GH deficiency which is a level of 5 or below (not sure of the ref range) I am about 3.2, but in the UK they do not treat GH deficiency and have renamed the condition Severe Growth Hormone Deficency and are refusing to treat what they term as boarderline levels. In UK terms/levels my GH via an insulin tollerance test was 11.5 and they only treat 9 or below. I had a baseline test 4 years prior and my result 4 years earlier was 44, so my GH in UK terms has gone from 44 to 11.5 in 4 years. So there is ongoing damage to the pituitary according to my endo, but they do not know why. I have osteoporosis in my spine and a bone density of minus 2.8 and am only 34 years old. I have very bad back pain on a daily basis and have to take pain killers round the clock. Because of the very high estradiol and the lack of GH I am completely exhausted and pretty much live sat in a chair like a 90 years old. I have been suffring and trying to obtain correct treatment for over 4 years now and I have tried everything from private practicioners to many differing endocrinologists in the UK. My bone density went from minus 1.5 to minus 2.8 in two years and the last BD test I had was about three years ago so I suspect now that the bone density might be minus 3 or below. Seem a crock doesn't it? Opinions welcome... Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2008 Report Share Posted June 26, 2008 I only made real progress with my doctor when I started showing the documentation. From: chis_az <chis_az (DOT) co.uk> Subject: What do you think of this? estradiol level etc Date: Thursday, June 26, 2008, 11:54 AM Estradiol reference range goes upto a maximum of 150pmol/l. My level is 423pmol/l. I think this would mean it was around 115picograms in US terms. I am trying to persuade my endocrinologist into treating. I am also trying to get put on Growth Hormone therapy. All this is VERY hard to impossible in the UK. I pass the US test for GH deficiency which is a level of 5 or below (not sure of the ref range) I am about 3.2, but in the UK they do not treat GH deficiency and have renamed the condition Severe Growth Hormone Deficency and are refusing to treat what they term as boarderline levels. In UK terms/levels my GH via an insulin tollerance test was 11.5 and they only treat 9 or below. I had a baseline test 4 years prior and my result 4 years earlier was 44, so my GH in UK terms has gone from 44 to 11.5 in 4 years. So there is ongoing damage to the pituitary according to my endo, but they do not know why. I have osteoporosis in my spine and a bone density of minus 2.8 and am only 34 years old. I have very bad back pain on a daily basis and have to take pain killers round the clock. Because of the very high estradiol and the lack of GH I am completely exhausted and pretty much live sat in a chair like a 90 years old. I have been suffring and trying to obtain correct treatment for over 4 years now and I have tried everything from private practicioners to many differing endocrinologists in the UK. My bone density went from minus 1.5 to minus 2.8 in two years and the last BD test I had was about three years ago so I suspect now that the bone density might be minus 3 or below. Seem a crock doesn't it? Opinions welcome... Chris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 > > From: chis_az <chis_az (DOT) co.uk> > Subject: What do you think of this? estradiol level etc > > Date: Thursday, June 26, 2008, 11:54 AM > > Estradiol reference range goes upto a maximum of 150pmol/l. > > My level is 423pmol/l. > > I think this would mean it was around 115picograms in US terms. > > I am trying to persuade my endocrinologist into treating. > > I am also trying to get put on Growth Hormone therapy. > > All this is VERY hard to impossible in the UK. > > I pass the US test for GH deficiency which is a level of 5 or below > (not sure of the ref range) I am about 3.2, but in the UK they do not > treat GH deficiency and have renamed the condition Severe Growth > Hormone Deficency and are refusing to treat what they term as > boarderline levels. In UK terms/levels my GH via an insulin > tollerance test was 11.5 and they only treat 9 or below. I had a > baseline test 4 years prior and my result 4 years earlier was 44, so > my GH in UK terms has gone from 44 to 11.5 in 4 years. So there is > ongoing damage to the pituitary according to my endo, but they do not > know why. > > I have osteoporosis in my spine and a bone density of minus 2.8 and > am only 34 years old. I have very bad back pain on a daily basis and > have to take pain killers round the clock. > > Because of the very high estradiol and the lack of GH I am completely > exhausted and pretty much live sat in a chair like a 90 years old. > > I have been suffring and trying to obtain correct treatment for over > 4 years now and I have tried everything from private practicioners to > many differing endocrinologists in the UK. > > My bone density went from minus 1.5 to minus 2.8 in two years and the > last BD test I had was about three years ago so I suspect now that > the bone density might be minus 3 or below. > > Seem a crock doesn't it? > > Opinions welcome... > > Chris > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 I pray this all works out for you it's been a long time coming. Co-Moderator Phil > From: chis_az <chis_az@...> > Subject: Re: What do you think of this? estradiol level etc > > Date: Saturday, June 28, 2008, 10:35 AM > > > > > From: chis_az <chis_az (DOT) co.uk> > > Subject: What do you think of this? > estradiol level > etc > > > > Date: Thursday, June 26, 2008, 11:54 AM > > > > Estradiol reference range goes upto a maximum of > 150pmol/l. > > > > My level is 423pmol/l. > > > > I think this would mean it was around 115picograms in > US terms. > > > > I am trying to persuade my endocrinologist into > treating. > > > > I am also trying to get put on Growth Hormone therapy. > > > > All this is VERY hard to impossible in the UK. > > > > I pass the US test for GH deficiency which is a level > of 5 or below > > (not sure of the ref range) I am about 3.2, but in the > UK they do > not > > treat GH deficiency and have renamed the condition > Severe Growth > > Hormone Deficency and are refusing to treat what they > term as > > boarderline levels. In UK terms/levels my GH via an > insulin > > tollerance test was 11.5 and they only treat 9 or > below. I had a > > baseline test 4 years prior and my result 4 years > earlier was 44, > so > > my GH in UK terms has gone from 44 to 11.5 in 4 years. > So there is > > ongoing damage to the pituitary according to my endo, > but they do > not > > know why. > > > > I have osteoporosis in my spine and a bone density of > minus 2.8 and > > am only 34 years old. I have very bad back pain on a > daily basis > and > > have to take pain killers round the clock. > > > > Because of the very high estradiol and the lack of GH > I am > completely > > exhausted and pretty much live sat in a chair like a > 90 years old. > > > > I have been suffring and trying to obtain correct > treatment for > over > > 4 years now and I have tried everything from private > practicioners > to > > many differing endocrinologists in the UK. > > > > My bone density went from minus 1.5 to minus 2.8 in > two years and > the > > last BD test I had was about three years ago so I > suspect now that > > the bone density might be minus 3 or below. > > > > Seem a crock doesn't it? > > > > Opinions welcome... > > > > Chris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2008 Report Share Posted June 28, 2008 Just to add to my last post... My testosterone to estradiol ratio after my once a week 100 Sustanon- which equates to 75mg of testosterone is as follows; 1 day after injection 9.5 to 1 ratio 1 days before next injection or day six....4 to 1 ratio!! 1 day after injection results; Testosterone 1117ng/dl Estradiol 115pg/ml 1 day before next injection Testosterone 254ng/dl Estradiol 63pg/ml > > > > From: chis_az <chis_az (DOT) co.uk> > > Subject: What do you think of this? estradiol level > etc > > > > Date: Thursday, June 26, 2008, 11:54 AM > > > > Estradiol reference range goes upto a maximum of 150pmol/l. > > > > My level is 423pmol/l. > > > > I think this would mean it was around 115picograms in US terms. > > > > I am trying to persuade my endocrinologist into treating. > > > > I am also trying to get put on Growth Hormone therapy. > > > > All this is VERY hard to impossible in the UK. > > > > I pass the US test for GH deficiency which is a level of 5 or below > > (not sure of the ref range) I am about 3.2, but in the UK they do > not > > treat GH deficiency and have renamed the condition Severe Growth > > Hormone Deficency and are refusing to treat what they term as > > boarderline levels. In UK terms/levels my GH via an insulin > > tollerance test was 11.5 and they only treat 9 or below. I had a > > baseline test 4 years prior and my result 4 years earlier was 44, > so > > my GH in UK terms has gone from 44 to 11.5 in 4 years. So there is > > ongoing damage to the pituitary according to my endo, but they do > not > > know why. > > > > I have osteoporosis in my spine and a bone density of minus 2.8 and > > am only 34 years old. I have very bad back pain on a daily basis > and > > have to take pain killers round the clock. > > > > Because of the very high estradiol and the lack of GH I am > completely > > exhausted and pretty much live sat in a chair like a 90 years old. > > > > I have been suffring and trying to obtain correct treatment for > over > > 4 years now and I have tried everything from private practicioners > to > > many differing endocrinologists in the UK. > > > > My bone density went from minus 1.5 to minus 2.8 in two years and > the > > last BD test I had was about three years ago so I suspect now that > > the bone density might be minus 3 or below. > > > > Seem a crock doesn't it? > > > > Opinions welcome... > > > > Chris > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008 On Thu, 26 Jun 2008 16:54:11 -0000, you wrote: >Estradiol reference range goes upto a maximum of 150pmol/l. > >My level is 423pmol/l. > >I think this would mean it was around 115picograms in US terms. > >I am trying to persuade my endocrinologist into treating. > >I am also trying to get put on Growth Hormone therapy. > >All this is VERY hard to impossible in the UK. > >I pass the US test for GH deficiency which is a level of 5 or below >(not sure of the ref range) I am about 3.2, but in the UK they do not >treat GH deficiency and have renamed the condition Severe Growth >Hormone Deficency and are refusing to treat what they term as >boarderline levels. In UK terms/levels my GH via an insulin >tollerance test was 11.5 and they only treat 9 or below. I had a >baseline test 4 years prior and my result 4 years earlier was 44, so >my GH in UK terms has gone from 44 to 11.5 in 4 years. So there is >ongoing damage to the pituitary according to my endo, but they do not >know why. > >I have osteoporosis in my spine and a bone density of minus 2.8 and >am only 34 years old. I have very bad back pain on a daily basis and >have to take pain killers round the clock. > >Because of the very high estradiol and the lack of GH I am completely >exhausted and pretty much live sat in a chair like a 90 years old. > >I have been suffring and trying to obtain correct treatment for over >4 years now and I have tried everything from private practicioners to >many differing endocrinologists in the UK. > >My bone density went from minus 1.5 to minus 2.8 in two years and the >last BD test I had was about three years ago so I suspect now that >the bone density might be minus 3 or below. > >Seem a crock doesn't it? > >Opinions welcome... Do you have money to travel? I'm curious if you say went to Canada and got diagnosed, if the UK NIH would take over continuation of recommended treatment easier than getting treatment there. With a documented diagnosis it may be easier for them to approve. It would seem too you could argue the process that they're denying you needed medical care better with a diagnosis and treatment plan in hand. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 > Do you have money to travel? > > > I'm curious if you say went to Canada and got diagnosed, if the UK > NIH would take over continuation of recommended treatment easier than > getting treatment there. With a documented diagnosis it may be easier > for them to approve. It would seem too you could argue the process > that they're denying you needed medical care better with a diagnosis > and treatment plan in hand. They have already diagnosed me as having Growth Hormone Deficiency and two of my enodcrinologist have written to the powers that be requesting that I am put on treatment for the good of my health and spine. But I do not meet the UK criteria for Growth Horme treatment which is to have severe GH deficiency according to their abstract created cut- off point. I have gone into thousands of pounds of debt already getting to the bottom of my health problems because my health service would not pay for proper investigations and I do not work due to severe ill health. Even If I went to Canada or the US and got diagnosed there it would only confirm what the UK has said, that I have GH deficiency. But the UK NHS would still unequivically NOT pay for treatment because I would still not meet their criteria for treatment. According to the UK and the NHS boarderline GH deficiency is below 20 on the UK range and anything near 15 is GH deficieny. I have a maximum response of 11.6 and the cut-off for treatment and what they deem to be severe GH deficiency is 9 or below. Cam you imagine a health care system applying this same logic to other conditions? Over night you could have no treatment for diabetes, heart disease, epilepse, alzeimers, lung disease etc and treatment ONLY granted for severe diabetes, severe heart disease, severe alzeimers, severe lung disease etc... My spine is rapidly crumbling and causing acute and chronic pain at the age of 34 and they know it will get worse and they know that GH deficiency is a contributory factor....but still I get no treatment. The way I see it if this state of affairs and non treatment continues I will sooner or later have a fracture of the spine and will be wheelchair bound. I know this situation may kill me at some point and that is in no way being overly dramatic, but do they care? Added to the long term issue and pain of the spine issue I also have extremely debilitating fatigue that is thought to stem from the GH deficiency, but again do they care? I actually cost my country more in benefits per year than the total cost of treatment me would cost and those costs can only esculate with ever worsening health. Because of jam jar accountancy and the fact that they (the NHS) are only worried as to what portion of money they have to pay out they do not look at the bigger picture, so purely on monetary terms, not to mention the idea of health and humanitarian grounds it pays to treat me, but none of this matters either. All the endocrinologists admit that pituitary function of this nature tends to fall over time, so they are not even avoiding to pay for treatment indefinitely, they are only likely to be minimizing their cost outlay for a few years, the thing is that outlay might mean it is too late for my spine. Looking at my GH test results, they also take the highest result you have and say that is your GH level, not the mean or average response, but your highest response. I had three GH results of 0.5 (almost nill), I had results of 9.6 and 10.5 etc, but they say my GH is 11.6 because that was the highets result. And even then that equates to about 3.2 on the US range with treatment beging at 5 and below. I just have to hope that my endo can get given a freebie by the drug rep/drug company when he goes begging. Given my GH has fallen from 44 four years ago to the maximum of 11.6, I can try for a retest and hope it has fallen another 2.5 in a year as that would see me break their threshold for treatment. Given my GH has fallen 8 points per year if averaged out, maybe it will have fallen by 2.5 in the last year? Quote Link to comment Share on other sites More sharing options...
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