High Oestrogen .. what happens next?

[Time_to_fix_it]

Hi and help please,

I’ve visited my GP about 2 weeks ago and he took some blood for hormone profiling prior to referring me to an Endocrinologist.  The results came back and everything was normal except my Oestrogen which was high (outside of the normal range he said) and the lab are running another test to be sure.  The GP put me on 20mg of Tamoxifen but increased this to 30mg as the nipple tenderness is still bad.  Even 30mg doesn’t make a lot of difference and he suggests uping it to 40mg.

As I’m still waiting for the NHS appointment with the Endo (which could take months), I’m just wondering what might be the cause or treatment for high Oestrogen.  Do any of you guys have this and what happens next?

I obviously can’t contemplate surgery until the underlying hormone problem is fixed.

[Time_to_fix_it]

Thanks for the response Manchest_er.

I’ve got the Endo appointment next week and I’m reading up on this subject as much as I can. (A lot to take on board).  I have a few questions on my mind just now, which I would like to clear up before the appointment.  Maybe any of you guys with a similar diagnosis or anyone who has the technical knowledge can help?

1.      What could be the reasons for a high oestrogen (oestradoil) level?  I’m 48 years old, only recently developed gyne and have never taken drugs or steroids.  All my other hormones are fine.
2.      What sort of treatments are available, and are they long term or short term?
3.      My GP initially put me on Tamoxifen but I’m concerned that only a dose of 40mgs a day seems to stop the nipple tenderness, as this is twice the normal amount.
4.      Would an oestrogen inhibitor be a better choice of medication such as Arimidex rather than the anti oestrogen Tamoxifen?
5.      Some posts on here seem to indicate that a DHT such as Andractim might be helpful.  I understand that this does lower both androgen and oestrogen levels, but somehow also increases the androgen to oestrogen ratio.  Can this really not only halt my gyne but maybe even reduce the size of it.  I am aware that reducing my androgen levels as well might reduce my energy levels.  But if a short term treatment of this can get me back to normal I'm willing to take a temporary drop in energy for a few months.
6.      Mention has been made of ‘clomid’ on the boards.  Anyone got any more info on this?

I guess I’m one of the older guys on here, but gyne came to me late in life and it’s not something I’m willing to accept or live with.  Any info anyone has would be gratefully received.

Thanks.

[Time_to_fix_it]

Well I see the Endocrinologist in about 15 hours and although I’ve read a lot there is still so much I don’t understand.  My oestradiol levels are high (223pmol/L in a range of 35 to 151.  All other hormones are bang in the middle of the range, including testosterone.

Any thoughts anyone of treatment options that either you know of or may have tried including side effects etc?

[orrible]

have you found any more info yet?

[orrible]

have you found any more info on this yet?

[Time_to_fix_it]

Well Stonecold ..... I’m not much wiser than I was 4 weeks ago.  I saw the Endo and after taking a full history, a reasonably extensive physical examination and lots of questions he said he wanted to run the tests again.  Frankly I was disappointed as it has taken 5 months to get this far and I told him so.  But he insisted he wanted to run the full hormone profile tests again so I have gone along with it and see him again next week.  My initial gut feeling of the chap was not great.  I can’t put my finger on it but we just didn’t gel, but I’ll see how it goes next week.

I do have one question though for anyone who might know (Hypo?).  Is there a listing of all Endocrinologists in the UK?  Maybe even a professional body to which I could refer if I want another opinion?

[orrible]

sorry to hear that you are non the wiser. I cant anser your question regarding other specialists but i imagine their are. Please keep us updated. How bad is your gyno? Do you plan to have surgery soon or will you have to wait until they can reduce your estrogen levels?
I thought if the gland was removed then regardless of your estrogen levels the gyno would be gone and shouldnt come back?

[Time_to_fix_it]

Stonecold ......after looking at some of the pics posted on here I would say my Gyne is mild to moderate.  I can hide it most of the time but for me that’s no way to live, especially in the summer.

There is absolutely no point in me considering surgery until the underlying hormone problems are sorted out.  My understanding is that Gyne can, and probably will return after surgery, if my hormones are still out of balance .. I would just grow more gland.  Frankly it would be money and effort down the drain and I would always advise fellow sufferers to make sure their endocrine system is ok before considering surgery.  Like many other sufferers I have to try and be patient as the good old NHS grinds slowly on, when I’m actually desperate to get rid of the damn things.  I am very fortunate though in that I have a loving and understanding girlfriend whose support is keeping me sane and focussed.

[hypo]

Hi Time_to_fix_it,

Your estradiol or oestradiol, spelling differs country to country is very high.

A typical healthy male oestradiol level is around 60pmol/l and an upper end of normal reference range of 150pmol/l is in itself easily high enough to cause gynecomastia, independently of normal testosterone levels in most men.

Of course your level is a lot higher than that hence the straightforward need for endocrine investigations.

I must say, your gp has been questionable in prescribing you Tamoxifen.  

He has very likely prevented the gynecomastia from developing further, which is great!

BUT- in prescribing endocrine altering medication he might have made the endocrinologists job a good bit harder, so much so that your endocrinologist might well be cursing your gp!

Tamoxifen will have altered your LH level and may have altered your thyroid function, so the results your endocrinologist gets back may be skewed by the medication.  Make sure that your endocrinologist knows your on this medication if he doesn't know already tell him about this as well as any other medications you are taking (your gp should have informed him in the referral letter).

Through luck or through judgment (knowing gps knowledge on these issues, I'd say the former- due to cost issues) he has prescribed an anti-oestrogen as opposed to an oestrogen/aromatase inhibitor.   This means your endocrinologist can at least still see that the problem of high oestradiol still exists for himself via pathology, something he would not have been able to do had you been prescribed an oestrogen/aromatase inhibitor.

Your endocrine investigations will most probably include serum oestradiol and oestrone, testosterone, LH, SHBG, hCG, Prolactin and thyroid function tests- TSH free T4 and T3, unless examination and consultation lead your endocrinologist down a more direct path to what he believes to be the cause of the problem.

Certainly your investigations should allow the endocrinologist to ascertain the origin of your problem and diagnose and treat accordingly.

At this stage it would be daft to try and hazard a guess at the aetiology of your condition and the reason for the raised oestradiol level, so that is something I'll leave.

If I have any advice it is A) that you ask questions and try and understand what is happening with regards to your own healthcare as opposed to being passive and uninvolved and B) that you make sure you get copies of your own results/test inclusive of reference ranges for your own records, something that can allow you to make sense of things at a later date when the endocrinologist is no longer there to explain matters.


Let me know how things go with the endocrinologist (he may have had to run that profile again because of your gp and Tamoxifen, worth keeping in mind)

If you wish to post your pathology results here at a later date I can help interpret them for you.

P.S

If you really want to get another endocrinologist, you can do that by asking for a second referral to another hospital or consultant by your gp, but that would take you back to the start of the process.  It is of course possible to get an appointment fairly quickly if you go private.  If this is something you want to do I’d raise it with your gp- he should be able to help you and explain how you would go about making such an arrangement.

If he cannot help- I can point you in the right direction if you tell me where in the UK you live and where you would be prepared to travel to.  

I hope that helps.

[Time_to_fix_it]

Well I saw the Endo for the second time today and got the results of the re-run blood tests .. they were pretty much exactly as they were 6 weeks ago.  My oestradiol levels are high 235pmol/L (in a range of 35 to 151) which is slightly up on last time.  All other hormones, LH, FSH, SHBG etc, are well within the normal range. I feel 6 weeks has been wasted and what is more important the chap I saw was not what my GP led me to believe he was.  He is not an Endocrinologist but a general consultant with a special interest in Endocrinology because my local NHS trust doesn’t have one at the moment.

I feel pretty angry about that.  The chap today said he wanted to do a CT scan of my adrenal glands.  When I asked why he suspected them, he said that they were one major producers of oestrogen in men and mine might have gone into overdrive for some reason.  Well, I have read the medical paper Endocrinology of Gynecomastia by Ismail and Barth and it quotes ‘direct secretion of oestrogen by the adrenal glands is negligible’ and because I had the paper with me, I showed it to him.  He didn’t have an answer for that except to say they were worth checking out, to stop taking the Tamoxifen (which is holding back the growth of my gyne) and he would see me again in 3 months.  I understand that a good Endo should still be able to diagnose the cause of gyne even if I’m on Tamoxifen, but then I no longer have faith in this chap.  I told him that we were prevaricating with this and all the time my gyne would be growing and remaining untreated.  But I was told that was what he had decided.

I’ve come away feeling pretty fed up and will be returning to my GP to ask for a referral to a proper Endocrinologist

[hypo]

Time_to_fix_it,

If you print out the mails I sent you it may help others- it may be something you wish to do.

I'll have those details to you by this evening.

P.S

I am glad you found the Ismail and Barth article that I put on the site to be helpful.

[Time_to_fix_it]

Thanks Hypo .. I’d by you a crate of beer if I thought you’d drink it.  For those that may find it useful ...  below are Hypos replies to my request for details of Endos with experience and knowledge of Gyne.


Quote .......
No problem at all in getting you this information, I can get back to you with the details tomorrow if you still want them after I explain the relevant facts.  In all honesty I don't think it will necessarily help and I’ll explain why.

The negatives first

The endocrinologists I am referring to are private, prescriptions cost money and are not covered by the NHS. Initial consultation and blood work is around £700- expensive.

Positives

They can get to the bottom of your problems via investigations that the NHS would drag their heals on performing or even refuse to perform. Results of investigations can be shown to force the NHS to diagnose/treat conditions they would otherwise not recognize. The problem is the positives you are looking for may not be there, because whoever you have the tests with, if Tamoxifen has altered your endocrine system and made testing of questionable use- them that goes for anyone testing you. I know you do not have faith in the doctor you have seen and you may have good reason to doubt him- you saw him after all not me, but I must say the blame for this really does stop with your GP who to my mind was remise in prescribing Tamoxifen.  Like I said your consultant was probably cursing your gp for this faux pas.  It may be that you want to wait for the next NHS appointment.

What I will say though is this.  Tamoxifen is out of the male endocrine system in 7 days according to AstraZeneca the original pharmaceutical manufacturers of Tamoxifen (brand name Nolvadex). How long it continues to exert an effect upon the HPTA Hypothalamus-Pituitary-Testicular-Axis is another issue, it is certainly likely to be a lot longer than 7 days but it may not be as long as 3 months.  For this reason you may still want a private appointment-  

That is really a question that only you can answer. Probably best to sit tight and await the NHS appointment and save your money for surgery (if that was something you were considering). Either way I hope that helps even if it isn't the best news in the world-  just let me know if you still require those details.

Gold Cross Medical Services  
Dr Malcolm Carruthers M.D, F.R.C path, M.R.C.G.P  
Telephone 0207 636 8283
enquiries@goldcrossmedical.com
20/20 Harley Street,
London, W1G 9PH
United Kingdom
 
Malcolm Carruthers has been a pioneer and world leading endocrinologist, he wrote the book the Testosterone Revolution- regarding the need for male TRT and the testing of hormones in the male.   He may have retired now- if he has there are still many of his eminent colleagues at the center. I would still say wait on the appointment from the NHS but this is THE place to go if you wish the expensive investigations to be undertaken A.S.A.P.  You would still need to tell them about the Tamoxifen- but that wouldn’t be the end of the world and I am pretty sure they could see you sooner than the NHS consultant has stated (as I doubt the effects of tamoxifen on the HPTA take as long as three moths to wear off).

Jeez......Ive been like Federal express- you've got it for the morning now though.
........Unquote.


You are a top man Hypo .. thanks again.