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Author Topic: HRT- 5th time lucky?  (Read 4042 times)

MicheleMaBelle

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HRT- 5th time lucky?
« on: June 04, 2017, 07:15:04 AM »

Hi ladies- as you may be aware I've struggled with various regimes, latest being oestrogel and utrogestan- continuous and then alternate days and sequentially for last cycle.
Saw consultant yesterday:

Could try Femeston
Could try Mirena ( too many issues here)
Could try Estradot ( he mentioned supply problems but if pharmacy phones manufacturer they send supply out) and continue with utrogestan for 7 days a month but at 200mg. Estradot at 25mg but go up to 50mg if symptoms return.

He finally confirmed that I'm progesterone intolerant and that he can count on the fingers of one hand the number of women he puts on lower dose progesterone as it's way off the UK prescribing guidelines and it removes the safety net. The risk of endometrial cancer does increase but it's still small and needs to be backed up by annual scans and samples of the lining for testing.

Thing is, I'm now terrified and was wondering if anyone could give me any reassurance that a similar regime has worked for them after struggling for ages on different combinations.? I know we are all different but I want my life back and have been steadily going downhill since I started on my HRT journey 18 months ago, especially switching from sequential therapy back in February .
I was seriously thinking of coming off it due to all the issues I've had but just wonder if I should give it one last go?

Thanks! X
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Mbrown001

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Re: HRT- 5th time lucky?
« Reply #1 on: June 04, 2017, 08:26:38 AM »

Have you considered coming off for a short while to see what happens and give your body a bit of a rest before trying again.

I have done this a couple of times just to see where I am in this meno madness journey.
Have to say although my flushes did return eventually, my mood and energy levels improved and I feel generally better.
It's always lack of sleep that drives me back.

I've also been able to reduce the amount of HRT after a break. I now use half a patch.

The really sad thing is HRT is not for everyone and despite best efforts some are better off than on.
Then the only thing you can do is stay as healthy as you can and reduce the osteo risk through diet and exercise.

Mrs Brown
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MicheleMaBelle

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Re: HRT- 5th time lucky?
« Reply #2 on: June 04, 2017, 12:03:46 PM »

He was very reluctant Stella Jane. I had to suggest taking it for a week to see if it helped. Maybe there's been some issues with a previous patient as he didn't seem to be that comfortable with it.x
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Hurdity

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Re: HRT- 5th time lucky?
« Reply #3 on: June 04, 2017, 04:28:04 PM »

Hi Michelemabelle

Interesting report from your consultant - thanks for reporting and would be interested to know if he is private or NHSW? There was some research a while back ( might be Sweden - sorry can't remember - will look up sometime?) -  with a trial which showed increase in endometrial hyperplasia with long cycle HRT - as would be expected. This is why some gynaes don't even like cyclical HRT if you are post-menopausal - because this also increases the risk. However as you say - women who are progesterone intolerant (properly so like you - not just a few side effects like I get which I endure) need to have something tailored for them. I think this is when the 7 days per month regime came from - because the long cycle fell out of favour.

In your case though - if you are post-menopausal and only taking 25 mcg patch for example, and have no uterus abnormalities (eg fibroids or polyps) - then theoretically you should not need as much progesterone anyway. Some women though do find that dose too low.

Yes do give it one last go! If you can cope with the 7 days suggested and your scans etc show no thickening, then maybe you could ask to stretch the cycle to calendar monthly and then 5 weekly perhaps? It would be a pity to have to come off it due to the progesterone problem - but I know this is the sticking point for many women.

Will you be taking it vaginally or orally?

Personally I wouldn't see the necessity of taking a break - but depends how you felt before you started (ie severity of symptoms), how far into menopausal transition, and how old you are ( really sorry I can't remember - been away for weekend again  - seems to wipe some of my brain  ::) !).

Hurdity x
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MicheleMaBelle

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Re: HRT- 5th time lucky?
« Reply #4 on: June 04, 2017, 06:46:51 PM »

I've not been away Hurdity and my brain has been wiped clean!

I've been on HRT for 18 months now. I'm 56  ( 57 later this year) and was still having sporadic periods when I went on it at just turned 55. No uterus problems as far as I'm aware but prone to infections which is why I'm not keen on Mirena.

The progesterone has dragged me down to an all time low but consultant has concern that I've got clinical depression on top of the hormone related stuff.

I was on two pumps of oestrogel and vaginal progesterone before but didn't really get on with it. I think he's starting me on a low dose oestrogen as I'm taking less progesterone under this new regime. He seemed a bit reluctant but I thought it was a reasonable starting point and I can maybe drop down and go longer cycle later if I need to. I'm just not sure if I want to try this any longer- I really do feel quite ill taking progesterone but not sure if I feel that much better on oestrogen only. Must admit, I'm in two minds.

Consultant is private as I was forced down this route unfortunately. He works mainly in the NHS though I I found him through this site.

He is lovely and very understanding but he can't tell me what to do for the best and I'm at a crossroads. Part of me thinks " give it one last go" and the other part wants to throw in the towel.
I know that some women get on with P longer cycle but I was a bit alarmed the other week when Dr Currie intervened in a thread about John Studd and his prescribing guidelines. Caveat Emptor was my take on it!
Decisions decisions x
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Hurdity

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Re: HRT- 5th time lucky?
« Reply #5 on: June 04, 2017, 06:47:52 PM »

Hi again Michelemabelle

I had a quick look at my bookmarks and for once went straight to it - I think this is the study I was talking about re long cycle HRT.

http://www.maturitas.org/article/S0378-5122(99)00033-X/abstract

Adverse endometrial effects during long cycle hormone replacement therapy

Ketil Bjarnason, Ã…sta Cerin, Richard Lindgren, Tom Weber, The Scandinavian Long Cycle Study Group

Objectives: treatment with unopposed estrogen is known to increase the risk of endometrial hyperplasia, atypia, and carcinoma, and therefore the administration of a progestin during hormone replacement therapy (HRT) is recommended. The addition of a progestestin may cause unwanted side effects. Progestin administration of various durations are therefore used in HRT. Study design: data were obtained about endometrial histopathology, bleeding interval and compliance in 240 early postmenopausal women receiving HRT with a progestin administered for 10 days during 12 week or 4 week cycles of estrogen administration. These regimens were studied for as long as 4 years. The daily estrogen given was 17β-estradiol 2 mg per day which was reduced to 1 mg day during the last 6 days of each cycle. The progestin used was norethindrone acetate, given at a dose of 1 mg per day. Results: the incidence of endometrial hyperplastic changes, i.e. simple or complex hyperplasia, atypia or cancer, was significantly higher in the 12 weeks cycle than in the monthly cycle group (P=0.003), with an overall annual incidence of 5.6% in the 12 weeks cycle group and 1% in the monthly cycle group. One case of atypical hyperplasia and one case of endometrial adenocarcinoma was observed in the long cycle group. Long cycle treatment produced more irregular bleeding pattern. Accordingly, the rate of drop-out due to bleeding was significantly higher in the long cycle group (P<0.01). Conclusion: we conclude that the long cycle HRT modality investigated did not improve compliance and may increase the risk of endometrial hyperplasia and eventually cancer compared to conventional HRT with a monthly cycle. Caution using long cycle HRT regimens is advisable, and careful monitoring of the endometrium during treatment is recommended.


I was right in that it was Scandinavia - not sure if Sweden though. I somehow thought the study was more recent than that but obviously not - there may be others around though?

Hope this is useful :)

Hurdity x
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MicheleMaBelle

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Re: HRT- 5th time lucky?
« Reply #6 on: June 04, 2017, 06:53:24 PM »

Thanks H- I'll have a look at this later. It's been a long day but thanks for your considered input. As always, very much appreciated x
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MicheleMaBelle

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Re: HRT- 5th time lucky?
« Reply #7 on: June 04, 2017, 07:04:44 PM »

sJ- hopefully but he says they are not foolproof and problems can still occur. I don't get the feeling he was scaremongering , he did say the risk was still relatively small but nevertheless it was still an increased risk on my part and I've got an uncomfortable feeling about it all.
Hmmmm...
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Hurdity

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Re: HRT- 5th time lucky?
« Reply #8 on: June 04, 2017, 07:07:04 PM »

Hi again again

I just posted again when you replied to mine!

Of course it is entirely up to you - but giving your body time to adjust to sequential therapy with minimal progesterone under supervision would mean you had really given it a good go. If you feel so ill during the progesterone phase and the period of time of feeling good (on oestrogen only) is not sufficient to override this - then maybe you might be better off stopping, but as I said it depends what your symptoms were before you started HRT and how bad they were, and how they have improved ( if at all) since being on HRT.

When you were on vaginal progesterone - was this 200 mg or 100 mg and was in continuous or sequential? Really sorry I have forgotten all the details as I know you've gone through it several times - but would take me too long to search!

It might well be worth trying the patch because not everyone gets on well with the gel - there are equally women (like myself) who has never tried gel (oestrogen) but has always felt fine mostly on 50 mcg patches (recently increased slightly for reasons I have given). I started HRT probably around the same stage as you -  I was late peri-menopause, almost 54 and had had a couple of periods probably in the previous year, and went 5 months since last one and then started HRT. I can honestly say that for the most part I have never looked back.

I probably sound evangelical about my regime but starting it when I did and the regime that I did - worked so well - and even then I was originally using Cyclogest ( vaginal progesterone pessaries) for 11 days per month and suffered migraines on withdrawal (of prog) as well as other negative side effects while taking it.

Dr Currie's intervention I imagine was deemed necessary because this website is underpinned by NHS treatments and led by an NHS gynaecologist and as such it would appear irresponsible to allow women to promote the self-prescribing of regimes that are not licensed on NHS, without supervision. There is quite a lot of what I call "Studdmania" - brilliant and pioneering though he is - but whose methods often go unquestioned  on this forum. I am always aware of the (hopefully!) thousands of women who read this forum either as members or non-members and get ideas about their treatment from here ( as well as the main website) - hence also my frequent caveats - annoying though these are for some  ::) !

Anyway at least you will know that you have given it a lot of thought and your best shot and let's hope this time you get it right - with a minor bit of tweaking maybe?

Hurdity x
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MicheleMaBelle

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Re: HRT- 5th time lucky?
« Reply #9 on: June 04, 2017, 07:22:18 PM »

Yes Hurdity- I would agree wholeheartedly ??? :o :( about what you say. No question that we each need to make our own decisions but we also need to be aware of the risks.
Apart from the flushes and sweats being under control, I regret to say that I've felt increasingly worse with HRT than without and that's saying something. insomnia, mood swings, depression, palpitations, anxiety, loss of confidence, panic attacks, anger, irritability, digestive disorders, brain fog, can't settle, can't concentrate, utter exhaustion. They were mostly all there before I started but my God, have they got worse now. especially on the progesterone part. 15 months on sequential therapy when I had my lightbulb moment, and what does the GP do. Switch me to continuous and with nasty norethisterone. So 3 HRT regimes in, I was forced to go private. Must admit, thought I had won a watch when he prescribed oestrogel and utrogestan ( 100 mg daily to start, then 100 every alternate day then 200 mg days 14-28 )  :(
It's great big Bridget Jones knickers !
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Mbrown001

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Re: HRT- 5th time lucky?
« Reply #10 on: June 04, 2017, 07:25:16 PM »

If you read back your own post Michellemabelle then I really think you have answered your own question as to whether to have a break and reassess.

I wish you the best luck with whatever you decide to do.

It must be your desicion and although we can support no one but but you can decide what feels best.

Mrs Brown

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Tempest

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Re: HRT- 5th time lucky?
« Reply #11 on: June 05, 2017, 07:03:41 PM »

Bless your heart, Michele! Dr. P is a lovely man but from my experience of him, I find that he 'goes by the book' as he's primarily an NHS consultant so is used to prescribing the recognised regimes. I found he was not too confident or keen on testosterone replacement either.

I think you'll find pretty much the only Consultant who advocates long cycle is Professor Studd.

If it's any consolation and although our situations are different, I have abandoned HRT completely ahead of hopefully starting afresh under the care of Dr. Louise Newson privately. My first consultation is on Thursday.

Sending you biggest hugs - I can certainly empathise with where you are at that crossroads at the moment. Sometimes taking a break to re-evaluate is the best thing we can do. xxxxx
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Tempest

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Re: HRT- 5th time lucky?
« Reply #12 on: June 05, 2017, 07:22:30 PM »

Oh, and p.s......Im actually in The Priory at the moment taking a break. I've been diagnosed also with chronic stress and am working with a great therapist (in case you've been wondering where i've disappeared to)! The symptoms of chronic stress really do overlap many of the symptoms you describe, on and off HRT (I experience these too) so I'm addressing this issue too in a holistic, drug free way going forward.

You can read about the symptoms of chronic stress here (you'll be surprised, I think)!

http://www.webmd.com/balance/stress-management/stress-symptoms-effects_of-stress-on-the-body

It was about time I started getting my life together as I was seriously getting overwhelmed.

I don't mind disclosing, if it helps anyone else here. My situation is proof that we really do need to take very careful care of ourselves  in all ways  at this time of life. xxxxx
« Last Edit: June 05, 2017, 07:29:57 PM by Tempest »
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MicheleMaBelle

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Re: HRT- 5th time lucky?
« Reply #13 on: June 05, 2017, 07:30:02 PM »

Thanks Tempest- he mentioned T at my initial consultation but not this time around. I'm having so many issues with the O&P part that it's not something that I would really want at this stage.
He's willing to give it a try but I've decided to probably have a break. Now having a bleed and joints and muscles really ache today. I dropped to one pump of oestrogel today as I'm going to reduce rather than stop cold turkey but don't know if the muscle ache is related.

Glad you've got your appointment- is it over the phone/ Skype or are you going to see her? Let me know how you get on.
BTW looked at private GP- not much choice. BUPA clinic city centre or Nuffield at their gym in Finneston, All prescriptions would need to be private too. Reckon we just need to find decent NHS practice or sympathetic GP but harder said than done.

Best of luck for Thursday xxx
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MicheleMaBelle

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Re: HRT- 5th time lucky?
« Reply #14 on: June 05, 2017, 07:36:48 PM »

I was actually thinking about you and was going to PM you as you had gone quiet. I'm glad it seems to be helping. you were in a pretty poor way so it can only do you good and despite your own troubles, you are some overwhelming lovely and kind to others. I really hope you start to feel better soon. You deserve it.  :foryou:
PS you got twin beds in your room? Happy to join you! Xxx
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