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Author Topic: utrogestan/estrogel support group  (Read 282546 times)

emmamarie

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Re: utrogestan/estrogel support group
« Reply #1980 on: August 15, 2019, 10:03:57 AM »

Hello! my first post. Sorry to jump in on this, but I have a question :) I have to have combination hrt and prefer the patches, but the only one available is not high enough dose and I'm still suffering menopause symptoms. I've just asked my nurse if I can carry on using the patches (which deliver oestrogen and progesterone) and "top up" with oestrogen gel. Does anyone else do this, and do the pumps deliver different doses? Thanks for any advice!
Em :)
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RebJT

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Re: utrogestan/estrogel support group
« Reply #1981 on: August 15, 2019, 12:18:33 PM »

Forgive me cutting and pasting, just posted this in newbies, but figuring out this forum and spotted this thread too.  I've just seen Prof John Studd and am starting his regime, but I'm a bit of a complicated case I fear.  Sorry this is chapter and verse!

Hi All

Pleased to be here.  I recently had a polypectomy and D&C at ChelWest after nearly a year of banging on the door of the NHS to get my symptoms taken seriously.  Two years of very heavy periods, and horribly jittery symptoms at mid cycle and just before my period.  Finally got bumped up the list when I had two irregular periods (long cycles, been 28 days on the nose all my life) and then a period that wouldn't stop, followed by one that wouldn't start.  On the long bleed, I took 10 days of 100mg utrogestan in the end, which stopped the bleed, but my period didn't start, which Chelwest gynae said indicated I didn't have enough of my own E.  He also said he felt I was anovulatory - I'm using ovulation sticks - I'd say he's right.  His thought was I'd need three pumps of estrogel.

Also need to add that I had a total thyroidectomy for Graves, Hashis, graves opthamology, and cancer in 2011 after TEN YEARS of misdiagnosis and then two years of mis treatment.  German Endo professor saved my life.  Took me a loooong time to get stable, and in the end I went DIY (with my endos blessing) and have been pretty stable on Natural Dessicated Thyroid hormones (the BHRT of thyroid) since about 2013.  My thyroid results are good.  Had a bit of a wobble in April and had to switch brands due to a reformulation issue, but other than that, all OK.  I also have anaemia, and heavy periods been a bloomin' nightmare, as I have to shovel in so much iron, otherwise I get jittery symptoms there too.  So I manage, but being thyroidless means I'll never be the same, 'you just take a pill and you're fine' being a woman hating lie imho!

Long story short, the NHS gave me the hard sell on Mirena (they must have asked me fifty times, including when wheeling me into theatre, despite me saying no, no, no, nope, no way! repeatedly - so much for no means no, the NHS seems to think it means maybe!) as I had a very hard time on the combined pill, and the prog only pill, and had a hideous time with prog cream a while ago (on some quack theory of a naturopathic doctor) and as I told my NHS gynae, after the thyroid hell, the NHS was never ever manipulating my hormones ever again.  He said 'fair enough' and agreed with my plan to see Prof Studd (who used to be his boss).

Saw the Prof, who said he felt my jitters were 'formication'.  My bone scan was terrible, I'm 46 but have the bones of a 70 year old woman, osteopenia in both hips and my lumbar spine.  Yikes!  No libido, tired, angry, weepy, foggy, up and down like a fiddler's elbow.  So he prescribed (like he does for everyone I think) 3 pumps of estrogel, 1 x pump tostran every 3 days, and utrogestan 100mg days 1 - 10 starting Oct 'to give you a breather'.

So far so good, except three pumps gave me vertigo, I was literally listing like a drunken sailor, and the tostran gave me a banging heart.  He called me back, said start on one pump, and build up weekly.  Meanwhile I've decanted some tostran into a little squeezy nozzle bottle and now taking a tiny pea dab every day, that seems to have sorted out the heart racing.  His nurse did tell me as someone who is 'sensitive' I might do better on a lower dose daily amount, seems she was right.

Sorry so long.  So, I'm exhausted, is this normal?  I'm also a bit shaky, sort of trembling in my arms and legs.  I went up to two pumps last night as directed and did feel a weird calm as I woke up, before the crushing fatigue started up again.

Also, when my blood results came back, my estrogen was 1,575!  I had the jittery symptoms on the day he drew the blood, so I'm thinking it's not 'formication' (low E symptom) but an excess estrogen / histmine response (I get a rash, I need to take anti histamines, I feel vibraty, like I've got adrenaline rushes, I shake inside and out, my heart races)?  https://www.larabriden.com/the-curious-link-between-estrogen-and-histamine-intolerance/  From chatting on mumsnet, some peri women do seem to suffer more on the estrogen spurts than the crashes?  I'm defo getting lows as well, but it seems to be the highs that are hard to deal with.  I also had the jitters on the day ChelWest tested my E, and it was 1,100 then as well, which does seem to confirm my hunch?

So sorry for chapter and verse, but does it get better?  what's the rationale for putting in more E when you are getting days of high E, does it override your own cycle (happy days if it does, I feel tyrannised by my own body)?  Does the fatigue lift?

Also my hunch is I'm going to need sequential from the get go, as much as I dislike the side effects of utrogestan (beyond 7 days I get really down, pile on weight, feel foggy) as the P does seem to stop the jitters on these high E days.  It does make sense in terms of my cycle, at the point where P should kick in is when they start.

If you're still here after all that (thank you!) is there anyone else getting these E spurts in Peri?  I am for sure getting low E days as well, and I'm seeing really changes in my skin, which would suggest that low E is a problem too, but it's these foul buzzy days that are doing me in!

Thanks

Reb
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jefner

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Re: utrogestan/estrogel support group
« Reply #1982 on: August 15, 2019, 03:06:58 PM »

hiya ladies.  I need some help right now, I feel scared and alone, apologies for long post but background info required.

Post menopause around 5yrs and decided to try hrt a couple of years ago and after consulting with a private meno specialist she started me evorel conti patch ago.  Only difference I felt was that any flushes I had disappeared but I wanted to try it because of severe anxiety I have and was hoping it would help.  Felt no difference and didn't contact my meno specialist again cus I was dealing with the other health issues I have ie. Hashimoto's, thyroid blah blah and didn't want to change too much at once as I would not have known what was working and what wasn't.   

Anyway contacted her back in March with some old test results that I had done around 6 months after starting the patch. She said I wasn't absorbing and moved me on to the gel (2 pumps) and Utrogestan 100mg (vaginally). Had a few good days here and there where anxiety wasn't that bad but can't say I noticed any real difference in anything to be honest.   

Tested after 3 months later and still estrogen levels too low, she wanted me on minimum 300 or ideally 450-650, so she upped me to 3 pumps a day from beginning of June. 

Couple of weeks after increasing I noticed some weight gain (which I don't mind was I was underweight anyway), enlarged and tender boobs, a little bloating and some water retention in my legs and a little bit of cramping.

I, unfortunately missed the odd progesterone which I think prompted some spotting the last week in July and which I was told is normal.  I hadn't felt too bad with the anxiety and then we had that really hot day of 100 degrees and since then I have felt so crap, ie. depression and worsened anxiety, brain fog, lightheaded, fatigued.  I retested early August and estrogen now 313 so she says to maintain that and test again in 2-3 months.

I am quite pissed off with her to be honest because she never made any attempt to explain how it all worked initially and what I might expect, so being the anxious person I am I would frequently email her with my worries.  But to be honest I know why she didn't say too much because she could tell from regular emails to her that I overthink which obviously heightens my anxiety, but at the end of the day I know my own body.

Yesterday, despite using the Utrogestan properly again for the last couple of weeks I have started to bleed again, this time it's not a pale pink showing but morelike a very light period, very red with very small clots in; enough to wear a small panty liner.  I am also getting some cramping and feel generally miserable like I used to when I had my period.

I have only been on my "therapeutic dose" (as she calls it) for 2 months but I sit here day in and day out feeling miserable, anxiety is high, no motivation to do anything, so little to no exercise and the depression is back, which I haven't had in over 2yrs.    I also live alone and spend most of my days alone, which I know doesn't help my mental health because I know I overthink.  I also have issues with agoraphobia and when my anxiety is bad I feel unable to do much at all except for staying in and just sit on the computer most days.  Even my yoga has suffered through lack of motivation or feeling fatigued or dizzy.    I know I am my own worst enemy in that respect but I just don't feel right and I cannot decide whether the hrt is making me worse.

I have spoken with my specialist about this but she just keeps coming back with "it's your overthinking that is making you feel worse" and doesn't seem to think that the hrt is affecting me in a negative way.

I currently do NOT know what to think, I am scared and alone.    All I know is that I am feeling worse unless my overthinking is making me feel that way.  I have had anxiety issues since I was a young child and I am 57 now but they were finally managed with an anti-depressant I started 15yrs ago but 3yrs ago stopped working, but I refuse to up it as it's the worst one on the planet to come off so I pop the odd Diazepam to help me through.

Just contacted my meno specialist and she has just replied and I am even more worried now at the mention of an ultrasound

"Utrogestan is  not a very strong progestogen.
We do sometimes find that patients bleed with it.
I would advise that as this is the second time you have experienced  bleeding  that you move  from the vaginal to oral  route.
I appreciate this may increase side effects, but hopefully  now you are acclimatised to it , they should be minimal.
If you cannot tolerate the oral route, the other option is to increase the dose vaginally, but this is may also increase side effects.
It is important to get you to be bleed free, as if bleeding continues we will recommend investigation with an ultrasound.

If you remain intolerant of utrogestan, we can trial an alternative, but I  am not hopeful that you would tolerate any of the other options"
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Nitajbee

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Re: utrogestan/estrogel support group
« Reply #1983 on: August 15, 2019, 04:41:59 PM »

Just a quick update on my trial of vaginal utro, 7 days of 100 with 50 evorel eostrogen patches.

I managed the 7 days fairly well, no awful side effects that I got with 200 oral. Bit tired but ok - only issue was irritation down below  :'(

Pleased to report no major withdrawl symptoms after stopping and 4 days later I have a bleed, the first one in a while, which is great news.

Will continue this regime for the next month and see how I get on!  :D
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RebJT

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Re: utrogestan/estrogel support group
« Reply #1984 on: August 15, 2019, 04:43:56 PM »

Jefner

Can't help on the HRT as I'm in the same boat, but is your thyroid optimal?  What do you take for that?  Are all your ducks in a row on iron, B12, vits and mins, taking enough electrolytes etc, as I have galloping thyroid issues (I had Hashis and graves!) and had to have a TT and it's been a right faff getting that all sorted out.  Wonky thyroid can make us feel dreadful, and anxious and down.  Sure you know all this, but are you getting enough T3?  Needs to be in the top quartile of the range.  Switching to natural dessicated thyroid changed my life, I'm on the same dose, my blood results are the same, but I'm such a different person.

Hope you find some answers. 

Feeling dizzy, I've found, in just the few short days I've been on it that taking my estrogel at night has solved that problem. 

PS in the ten years I was fighting to get anyone to give a crap about my thyroid, I've learned that if you don't like your specialist, find another, they're not God.  It's your body as you rightly say, find someone who listens.  I'm incredibly sensitive to hormone shifts, and I'm a bright woman, I think a lot, 'over thinking' isn't a crime, I'm one of those people who likes to understand what is going on.

All the best from another Newbie

Reb
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jefner

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Re: utrogestan/estrogel support group
« Reply #1985 on: August 15, 2019, 06:52:52 PM »

HI Reb, I keep a close eye on my thyroid levels and only checked on them a couple of weeks ago after being on my hrt for 3 months.  My tsh has gone up a bit from 0.27 to 2.47 which kinda means I am undermedicating again but if I increase  my T4 my levels are high in the range anyway and I may go over range on that.  As regards my T3, my levels are low in range and always have been although I take 10mcg T3 every day and am trying to increase to 15mcg to see if that makes a difference, although I have RT3 issues as well from previous testing.  I wondered about NDT as an option but I know no-one who has the experience to monitor it.  As you in the UK?  I have tried so many people for help until I am blue in the face and no-one really cares, I am on my own
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RebJT

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Re: utrogestan/estrogel support group
« Reply #1986 on: August 15, 2019, 07:04:45 PM »

Hiya

I'm on my own too, I have a mexican standoff with my endo (big London teaching hospital), she doesn't mention it if I don't, she does my bloods and that's it, that's after she gave me the 'speech' about levothyroxine and I said 'the only circumstances under which I would put that SHIT in my body ever again is if someone held a gun to my head and even then my preference is they pull the trigger' - she didn't argue after that.  Low T3 could be causing your issues, including your low E.  I take 150 T4 and about 40 ish T3 if that helps you, I take 4.5 grains NDT, but I'm surgically hypo.  I've been trying to work out the complex relationship with E and TBG (thyroid binding globulin) which can increase with E supplementation (not with Gel as far as I can work out) so many meno women who take HRT need a thyroid dose tweak.  High T4 with low T3 points to a conversion issue, RT3 is a bit of a red herring imho in that it points to something else, usually IRON.  I need my ferritin over 100 to feel anything approaching well (you can't tolerate T3 without iron), and also keep any eye on co factors, like selenium.

STTM guidance on how to take NDT is helpful, although you could prob start on a bit more as you're used to T3, but 'getting your ducks in a row' is the key thing.  Defo space your T3 out, so if you go up to 15, then 3 x 5, on waking, lunchtime, tea time, you might need a crumb at bedtime also.
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Nannyneet

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Re: utrogestan/estrogel support group
« Reply #1987 on: August 16, 2019, 11:09:46 AM »

Hi can I join you ladies,I started on Oestrogel and utrogestan yesterday so I'm in the very early stages with this
I am 56 and havent had a period for over a year so I'm considered post menopausal, I am using two pumps a day which I'm doing in the evening and I'm taking the utrogestan orally one a day continuously as advised its ok to do this by menopause specialist

How long did it take to notice any difference,I'm obviously not expecting results yet because I've only taken one dose,also has anyone had any side effects or have you felt ok on this regime
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kayellvee

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Re: utrogestan/estrogel support group
« Reply #1988 on: August 16, 2019, 11:59:58 AM »

Hi Nannyneet, I've just started with Oestrogel and utrogestan yesterday too, although I'm waiting on the pharmacy to get the utro, so I've just started with the gel yesterday.  So far I've had 2 lots of gel (x 2 pumps each time) and I definitely slept better last night and haven't had the nausea/morning sickness that I was getting before starting the estrogen, so I think that's helping.  I've got other stuff going on, so still feel crap, but am cautiously optimistic that at the least the gel part is improving certain things. 

I was on patches for a week and a half before that and had an allergic reaction so had to stop but I noticed an improvement in sleep/nausea after a few days with those too, which worsened when I had to stop taking them.  Can't say anything about the utro yet, but I'm sure others can chime in.  I'm peri, so I'm only taking the utro for 12 days of my cycle rather than continuously.
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Jmargaret

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Re: utrogestan/estrogel support group
« Reply #1989 on: August 16, 2019, 01:15:30 PM »

Kaye - are.you going to be taking 100mg  or 200mg of utro when yoi start?
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kayellvee

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Re: utrogestan/estrogel support group
« Reply #1990 on: August 16, 2019, 01:40:02 PM »

200, I think.  ETA - yep, just checked the pack, 2 x100mg.
« Last Edit: August 16, 2019, 03:27:30 PM by kayellvee »
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Nannyneet

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Re: utrogestan/estrogel support group
« Reply #1991 on: August 16, 2019, 04:29:52 PM »

Hi Nannyneet, I've just started with Oestrogel and utrogestan yesterday too, although I'm waiting on the pharmacy to get the utro, so I've just started with the gel yesterday.  So far I've had 2 lots of gel (x 2 pumps each time) and I definitely slept better last night and haven't had the nausea/morning sickness that I was getting before starting the estrogen, so I think that's helping.  I've got other stuff going on, so still feel crap, but am cautiously optimistic that at the least the gel part is improving certain things. 

I was on patches for a week and a half before that and had an allergic reaction so had to stop but I noticed an improvement in sleep/nausea after a few days with those too, which worsened when I had to stop taking them.  Can't say anything about the utro yet, but I'm sure others can chime in.  I'm peri, so I'm only taking the utro for 12 days of my cycle rather than continuously.

Hi,I'm post meno so I'm taking the utro continuously which I was relieved about because I would never remember to take it otherwise 😀 I didn't go for the patches because I have very sensitive skin and was worried I'd have an allergic reaction,we will have to compare notes,I don't sleep very well and I have nausea in the morning,it's encouraging to hear it's helped with that at least
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kayellvee

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Re: utrogestan/estrogel support group
« Reply #1992 on: August 17, 2019, 06:22:33 AM »

I have a question - I've noticed that a lot of you take utrogestan vaginally instead of orally but when I mentioned this to the GP I saw on Monday (not my regular GP, another one who is the head of the practice) she said no because it doesn't offer enough protection. I'm starting mine tonight - orally - and am a bit worried about side effects, TBH although I'll give it a go.  Do those of you that take it vaginally have your doctor's agreement, or do you just do it anyway?
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Nitajbee

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Re: utrogestan/estrogel support group
« Reply #1993 on: August 17, 2019, 09:18:42 AM »

I just started doing that this month as can't cope with them orally. I haven't spoken to my GP about it, but I probably will when I have my review next month. I will also ask for a scan. I don't think they will be happy. But I did have a bleed after the 7 days and I don't always on patches, so I am presuming this means it worked...
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Birdy

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Re: utrogestan/estrogel support group
« Reply #1994 on: August 17, 2019, 10:43:53 AM »

I have a question - I've noticed that a lot of you take utrogestan vaginally instead of orally but when I mentioned this to the GP I saw on Monday (not my regular GP, another one who is the head of the practice) she said no because it doesn't offer enough protection. I'm starting mine tonight - orally - and am a bit worried about side effects, TBH although I'll give it a go.  Do those of you that take it vaginally have your doctor's agreement, or do you just do it anyway?

Your doctor is wrong. Completely incorrect. You actually absorb more used vaginally. Taken orally, a lot of the hormone is lost during digestion and it is processed by the liver, which isn’t ideal either.
Utrogestan is licensed to be used vaginally in European countries and it is exactly the same product we use. I use utrogestan vaginally and have fewer side effects that way.

I wouldn’t even bother telling my doctor I use it vaginally. He, like many GPs, is woefully ignorant about HRT, menopause, treatments, symptoms, emotional and physical toll, that he would probably implode. Useless. Even the ‘meno nurse’ at my practice is incredibly misinformed.
« Last Edit: August 17, 2019, 10:46:49 AM by Birdy »
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