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Author Topic: Any help/advice  (Read 3719 times)

JudyG123

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Any help/advice
« on: May 26, 2015, 04:32:06 PM »

Hello
New here and would love some help with all this. :)
Just a little background to try and cut a long story short. I'm 44 years old, and I have been on Cyclical Bio-identical HRT for two years. Estrogel/Utrogestan. I was put on these by an Endo in another country I was living in. Before going on to HRT I had gone down the NHS route trying to get help with VERY severe PMS. I used to be very ill around ovulation and a week running up to my menses. My cycle was very short and could be irregular so I spent a lot of time in a very bad place. It was a long journey on the NHS and after blood tests it came back I was no where near the Menopause but I had very high Testosterone and Androstenediol.They though I had PCOS and ordered a scan, the scan came back absolutely clear, and I showed no other symptoms of PCOS, I am very insulin sensitive and weigh 8 stone, no acne, no infertility issues etc, so they said it was adrenal probably, or it could be "just me" and they could shut me down in my brain (Hypothalamus) but that would put me straight into Menopause. Or, they offered me SSRI's . I did not want either, I thought I would try and find out the route cause of my hormonal imbalance.
I had a lot of tests done by the Endo abroad and he found the same, that my Tesosterone was very high, and my Estradiol at that time, at Luteal was 122ng/L (range100-210) and at ovulation 130ng/L (range 150-600) but the weird thing is my FSH was 5.4 IU/L at Luteal(range 2-13) and 11.6 IU/L at ovulation (range 5-22). All other FSH were low on the NHS, as was my LH tests. So I was told I was not near menopause but I had a big hormone imbalance with very high Androgens and low Estrogens. I have Hypothyroidism which he treated successfully by changing to a different medication. He also said I had an enzyme problem which was the root cause of my issues, maybe no Aromatase????? It was the same for my Thyroid,lacking an enzyme for conversion of T4 to T3, so I started on T3 as well as T4. He put me on Cortisol as my Cortisol was extremely low and this did get my Androgens into normal levels for the first time in years!!!!...which stopped the PMS in it's tracks. Life was good for a good 18 months :D
He put me on Estrogel 3 pumps a day and utrogestan 100mg from day 15 to day 26...I felt great for months..then the last 6 months PMS symptoms are getting really bad around ovulation again, I put on huge amounts of fluid 9/10lbs OVERNIGHT which sets of Angina due to an underlying genetic heart condition. I got tested last year and Estrogen suddenly went low on Estrogel it seemed to be swinging, after it spiking high the first 8 months he told me to go down to 2 pumps a day, androgens were still normal but I came off the Cortisol as I was worried about shutting down my own adrenal glands. It took some doing!!!! A very slow arduous wean!
I had recent bloods done as I was feeling so pumped up all the time, I run Marathons and I feel I need to run all day again, so I was thinking I wonder what my Androgens are again. My Testosterone was 75.09 ng/ml (range(0.5-50.0) So I am going high again. My Progesterone was 15,3 ng/ml (range 0.38-27-30) . My progesterone has actually come down after Utrogestan from my natural level???? But here was the killer my Estrogen was 373 pg/ml (range33-300) so too high as well now. I have been on 2 pumps a day for a good year now.
What I'd like to ask you ladies is... Do you think I should be on HRT with a low/normal FSH?? I have sought two other opinions from Gyne's one said yes, one said NO WAY??
Would my ovaries be kicking in now because my thyroid is in a much better place? Has anyone come off Estrogel here? I am getting a day 3 cycle test done for Estrogen next week, so I will see what I am like in that.

 Also can anyone please suggest any names for Private Endo's/Gyne's who could help me at all in the UK? as we are now back living here full time after working abroad for a number of years.

Sorry for long ramble, it may not make much sense  :-\ but any help would be appreciated, as I feel pretty wired and running at 90 miles an hour again and I hate it, terrible ovulations and bad PMS AGAIN, which I have alway had since teen years, but so much worse from my late 30's. The NHS don't seem to offer much help as their stance is with my multiple underlying health issues especially with my heart they don't want me anywhere near HRT, but high Testosterone in itself is very hard on the heart but they do not want to help me with that, or the cyclical Angina :'(
Thanks in advance ladies ...for anything :-*
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ancient runner

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Re: Any help/advice
« Reply #1 on: May 26, 2015, 04:44:03 PM »

Blimey. There are a lot of experts on here and I feel sure someone will be along to help very soon. And the Dr who runs the site, Dr Currie, does email consultations for a smallish fee which might also be useful for expert advice. Good luck!
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justaboutcoping

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Re: Any help/advice
« Reply #2 on: May 26, 2015, 04:47:29 PM »

I'm afraid I can't help with any of this but just wanted to say welcome to the forum.

I'd used the email consult with Dr Currie and it's well worth the money x
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JudyG123

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Re: Any help/advice
« Reply #3 on: May 26, 2015, 06:00:30 PM »

Hey Ladies :)
I appreciate your answers, it's nice just to get some to be honest, as I know it's a bit of a head scratcher to say the least and a complex problem. I think this is why I am not getting much help. I will try the question to Dr Currie on here. So thank you for the point in that direction.

 Does anyone know if that is a really high level of Estrogen I have on Estrogel? Has anyone else got those sort of levels on two pumps?

I have read Estrogen can build up and become toxic if the Liver cannot clear it fast enough. I do have a good liver function test..Maybe my Ovaries are waking up, but again because I have several Auto-immune disease's a couple of experts have said I probably have had ovarian failure due to that...It's always "probably" and no one seems to want to find out the real reasons behind the imbalance, and my symptoms, which are getting worse..I don't mind, so long as the symptoms are not there and I'm not storing up trouble for the future walking around with super high levels of sex hormones :-\
Anyway, again, thanks for the warm welcome Ladies :-*
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BrightLight

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Re: Any help/advice
« Reply #4 on: May 26, 2015, 07:28:55 PM »

Hello - I am not an expert at all and hopefully someone with experience will come along and make comment.  Rationally your thinking about your thyroid function affecting hormonal levels would make sense - whether you should be on HRT I am not able to say.  It sounds as if you are being treated with hormones therapy for issues aside from actual menopause as it were - the therapy is aimed at balancing all your sex hormones - have I got this right.

In any case it really does sound like you need to see an expert, perhaps look at things afresh, not only to feel well, but so that you feel in control and aware of what is going on for you.  I can't recommend a gynae, have you looked at the tab 'specialists' it has a list of clinics in the UK - the link is here

http://www.menopausematters.co.uk/clinicfinder.php
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JudyG123

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Re: Any help/advice
« Reply #5 on: May 26, 2015, 08:13:10 PM »

Thank you Bluelight :)

I really do want to find an expert who can help,that was one of the reasons I came here. If anyone can identify with any aspect of my situation and recommend anyone Country wide, I am prepared to travel anywhere, then that would be an absolute God Send. I really need an Endocrinologist who specialises in Female Hormones. I know I did have low Estrogen before Estrogel, not menopausal low, but low, and have ongoing issues left from this. So I do know I need the Gyne side of things addressed too. Sex can be very painful and at my last smear test the Nurse said I was so tight that she said I must find sex extremely painful and she struggled to get the speculum in, and had to use a super small one, and said we better get it right as there is no way you want to be coming back..GREAT!!!!.. I suffer with Interstitial Cystitis in bouts and the last Gyne I saw wanted me on permanent antibiotics and gave me Ovestin, which seemed to help for the first six months. He said my pelvic floor was Hyper-tensive, TOO toned, and I need to learn to "relax it more" and I would find sex more comfortable..that was it, not much help at all for £150!!!!! I love sex, it's just I'm sure the lack of Estrogen has made it more uncomfortable over the last few years. So I am losing hope now, as sex ends in extreme pain again, especially at Ovulation. I also have a tipped uterus. which I'm sure does not help.
Does anyone know of a better vaginal Estrogen cream? Oh, and my GP scared the Hell out of me on prescribing it, saying with your other health issues I would not like you to take it more than once a week, the Gyne was more than happy for me to be on it along with the Estrogel..I get such conflicting messages all the time. It seems Estrogen is the spawn of the Devil to a lot of Dr's!!!
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Hurdity

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Re: Any help/advice
« Reply #6 on: May 26, 2015, 08:41:46 PM »

Hi JudyG123

 :welcomemm: from me too.

Sorry to hear about all your issues but it's far too complex even for an informed amateur and yes you do need to see and endocrinologist!

I gather the main problem is that this species (of expert!) tends to specialise in one aspect or another but this needs a very knowledgeable expert holistic endocrinologist who undersstand not just sex hormones, thyroid etc but all of it!

My only experience is I went to see a private consultant about libido (lack of it) and HRT over 60 and saw Dr Annie Evans in Bristol.  Her speciality is women's health but as I remember, she told me she was an endocrinologist not a gynaecologist. Here is her website: http://www.drannieevans.com/#!about2/c4nz It might be worth having an appointment if you get no joy on NHS?

AS for the oestrogen cream, surprising that you are having problems if your oestrogen is high, but if it was low for years, and Ovestin does the job then it is surely needed? Your doc was talking rubbish about not taking it more than once a week! All vaginal oestrogens should be used for at least 2 weeks daily followed by twice weekly thereafter. This is an absolute minimum to deal with vaginal atrophy issues. Many women need more than this. There is minimal systemic absorption of oestrogen once your tissues are plumped up and the oestrogen in Ovestin is estriol, not estradiol (which is in Oestrogel). Ovestin is the most concentrated cream but there is also Vagifem. These are pessaries which contain estradiol and are less messy than Ovestin, but perhpas don't give the same lubrication as the cream.

I agree that first you could maybe send that information to Dr Currie - the info how to do it is on the homepage of the website. I think it's £25. Scroll down.  http://www.menopausematters.co.uk/index.php

Sorry I can't be of more help but you defo need expert advice!

Hurdity x


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JudyG123

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Re: Any help/advice
« Reply #7 on: May 26, 2015, 09:23:30 PM »

Hurdity...THANK YOU :)

I will look into that link you gave me. How did you find Annie Evans? Was she a good listener? Or did she want you in and out? I hear ya on the specialising on the one issue, it took me to another country to eventually get my poor Thyroid function sorted out, after the NHS left me languishing for 10 years Hypothyroid, so I tend to find the Private sector a bit of a Gravy train to be honest in the UK, though I do know there are always genuine Practitioners out there who do want to help...it's just finding them. Maybe this Dr Evans maybe a good find for me, so thats just what I was looking for coming here. I think when it was not the obvious PCOS the NHS Consultant didn't want to know, and the Endo, who is VERY good in Belgium was right about the Cortisol issue but it is a big undertaking unless you have full blown Addisons which I do not. I will look into Vagifem, which is the stronger? Ovestin or Vagifem?
Anyway, thanks again Hurdity :-*
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CLKD

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Re: Any help/advice
« Reply #8 on: May 26, 2015, 09:26:27 PM »

 :thankyou:  Hurdity …………. >wave<

 :welcomemm:  …….. JudyG123 - browse round. 
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