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Progynova - what dose were you on?

(49 Posts)
GlummyMummy Thu 12-Jan-17 17:21:04

I'm having my fourth round of IVF at the moment, first frozen cycle. We have a little girl from our first cycle. I'm 36 now. I've been down regging for three weeks and started progynova yesterday. Doctors have put me on what seems like the highest dose, 10mg per day for a week, rising to 12mg a day for the second week.

I'm a bit concerned about possible side effects (increased cancer risk and possible risk of DVT). Drs haven't really given a reason for such a high dose, just said that although my lining has got over the the required 7mm by time of ET, it's been slow to thicken during stims.

Has anyone else been on such a high dose, and if so, what was the reason and how did you feel on it?

Any info would be great, feeling a bit concerned

bananafish81 Thu 12-Jan-17 23:16:03

Cancer risk from HRT is from prolonged use over years

Not weeks or months as used in fertility treatment

If you've had slow lining makes sense that they're starting higher, sounds like they're tailoring your FET meds to learnings from your previous response which is great

tigerdog Thu 12-Jan-17 23:19:12

I had 3 x 2mg orally then they added 2x2mg vaginally. I don't have lining issues but for my FET they increased the dose as it was slow to get started. I did get pregnant although I had a mmc at 11 weeks.

GlummyMummy Fri 13-Jan-17 07:15:59

Hi Banana, how are you? I appreciate the risks are for ladies on it over a number of years but I can't help being concerned about the long terms effects of all these hormones. Plus I have varicose veins so DVT risk worries me slightly as I know there's a link. Thought they would maybe start me on a lower dose and build up, but no, straight in at 10mg a day. Plus they've never even said my lining was ever an issue!!!!

Hi tiger, did you have any side effects on it?

tigerdog Fri 13-Jan-17 07:19:05

No, I felt fine and didnt have any issues. I took it from two weeks (approximately) before transfer and continued on 10mg until 8 weeks pregnant, then went back down to 6mg.

Blondeshavemorefun Fri 13-Jan-17 08:00:38

Could have sworn I answered this last night

I took 4mg for maybe 2/3days then 6g a day for a fet. Did 2 fet and 2era (from end of Jan to july) and all 4 were 6g daily and when 5th attempts (2nd fet) worked then stayed on 6mg a day till 14w.

Maybe you hve a higher dose as lining takes longer to thicken?

As banana said it's long termed use over years not a few weeks. Saying that I was in 6mg a day literally from end of Jan last year when started fet 1 - to end of sept /early oct when 14w preg

They usually say stop 12w preg as placenta takes over tho as I was on for so many months I carried on and weaned body off by going to 4g then 2g as I was worried. Clinic said no need but also said wouldn't hurt to do that if make me feel better

bananafish81 Fri 13-Jan-17 11:47:50

Glummy maybe your clinic's data shows their patients have done better on higher starting doses? What do they say?

If you're anxious about HRT then would natural FET be an option? Or ovulation induction FET? Medicated FET gives the Dr more control and natural or OI FET are more unpredictable, but they are options to consider if you're really anxious. There's no data to suggest there's any reason to be concerned about the effect of short doses of HRT (as in months not years) but if it's going to be a source of anxiety then would a different option be preferable?

I'm still dealing with my rubbish endometrium. Had my hysteroscopy after the second miscarriage in Oct and had a copper IUD put in to try and get me menstruating. We did a few HRT cycles which were a total washout as it's clear I simply don't respond to artificial oestrogen. Tried progynova pills, and progynova plus Evorel patches - my estradiol levels were pitiful so it's clear I don't metabolise it properly. So not surprising I didn't get a proper period when my lining wasn't growing. My lining only responds to my body's own natural oestrogen so as I don't have cycles, that means stimulating my lining with ovulation induction. Month of Gonal-F and I got an actual period for Xmas! Did my second cycle of OI and am waiting to see if I get a bleed. If I do then the coil can come out and the next OI cycle can be a mock FET, and we can do endometrial biopsies (including the ERA biopsy)

Unfortunately it's all been rather stressful as currently going through a cancer scare after an abnormal smear, but that's a whole other story!

GlummyMummy Fri 13-Jan-17 12:30:15

Thanks everyone. Spoke to my Dr (mind you I see a different one every time I go!) and hes offered to scan me after a week to see how things going.

I think im just getting paranoid after all these IVF attempts! 😃

Unfortunately a natural fet has never been suggested to me, not even sure they offer it to be honest. It's very much one size fits all at my clinic which is frustrating as things are never properly explained.

Does anyone know how HRT works in thickening lining? Is it meant to thicken by so much per day or does it thicken then stop and maintain its thickness? Hope that makes sense!

Banana-i hadn't realised about your cancer scare, not been on here much over Xmas. That's awful, as if you haven't been through enough! When are you back at hospital about it? I'm sure, as you say, anything like that would have been picked up during your scans/hysteroscopy etc

bananafish81 Fri 13-Jan-17 13:46:01

That's good! When was your first scan scheduled for anyway? I was scanned about a week in I think. After a week my consultant said he was looking for about 5.5 - 6mm+, obvs you know that you're aiming for min 7mm but ideally 8mm by initiation of progesterone. You just take the oestrogen until your lining is thick enough and then start progesterone and schedule transfer for 3/5 days later. The only focus is the lining so the timing is according to how your lining thickens up, you're not trying to sync with egg collection (or ovulation as in natural or OI FET). That's why most clinics prefer medicated FET as they have more control. 

We tried with HRT 3 cycles in various permutations of pills and patches, and all were a washout, so it's just not an option for me!

The smear result suggested suspected endometrial cancer, however both my fertility consultant and the consultant at the NHS gynae-oncology clinic said with normal histology in my biopsies and hysteroscopy, it was very unlikely to be a genuine endometrial abnormality, and likely a wonky result from all the hormonal treatment I've been having. I'm to have a repeat smear and colposcopy to rule anything out, but both said it's unlikely to be anything sinister. Waiting for appt to come through (first referral was cocked up, as has this one been. Sigh). We shall see. 

GlummyMummy Fri 13-Jan-17 18:17:42

First scan was scheduled for two weeks after starting progynova. Pleased to get scan after a week, would have thought it would make sense as they have no idea how I'm going to respond to it.

So, does the oestrogen start thickening the lining immediately or does it take a few days to work?

That's ridiculous they're keeping you hanging on like that Banana, talk about stressful! Your consultant sounds great though, you're in good hands there

Blondeshavemorefun Fri 13-Jan-17 20:57:43

I was told thickens to 8/12mm and then maintains

I reach 11 Easily so then maintain and fet 6/7days later

But sure all are diff

Banana. Sorry to hear about your scare. I had one years ago and had cone biopsy and lasers - which actually shaved off mm off my cervix so I have reg cervical checks as well at scans

bananafish81 Fri 13-Jan-17 23:41:18

Glad you’re being seen after a week Glummy - 14 days sounds extraordinarily late for a first scan. I’d have expected a first scan to be around 7-10 days. I think 14 days of oestrogen stimulation can be pretty typical before starting progesterone, (although obvs it varies) so seems v late for a first lining scan. 7 days sounds much more sensible! Response to oestrogen varies from person to person - in theory it starts straight away, some clinics do a step up approach to replicate rising levels of oestrogen in a natural cycle, others start on a higher dose and maintain, only increasing the dose if the lining isn’t responding. My Dr started me on 6mg a day, although when I wasn’t responding to the pills we added in patches for a different route of administration

I sat on the phone basically all day today chasing the hospital and managed to nab an appt at the colposcopy clinic for Tues, as they’d just had a cancellation. Makes me so mad that it’s only because I was pushy and kept ringing up to find out what was happening with my referrals that the errors were picked up, I’d have been waiting for god knows how long.

blondes the smear test itself was normal - the suspected abnormality was non cervical (i.e. endometrial). So it’s unlikely I would have a biopsy or need LLETZ unless the smear suddenly came back with dodgy looking cervical cells (that were fine 6 weeks ago). Thankfully there is no need for any further investigation of the endometrium, because, as my consultant said, I have had one of the most thoroughly examined uteruses in London over the last 9 months. They said cytology was much more rudimentary than histology, and that it was very unlikely that two endometrial biopsies, looking at directly sampled endometrial tissue would have missed an endometrial abnormality that was then picked up by a mascara wand around the surface of the cervix. But I’ve been on the wrong side of statistics over the past 18 months, so the unlikely can’t be ruled out without more investigations.

My consultant is great - I think most clinics would have given up on me, as my lining has been incredibly difficult to treat, and we’ve had to really think outside the box. It’s a ridiculous state of affairs that I’m doing stims to grow eggs, purely in order to grow my lining, while I’m contraception, to try and get me to have a period, as part of treatment to help us have a baby. FML!

GlummyMummy Sun 15-Jan-17 16:15:31

Banana, that's bad you're having to keep chasing them, ridiculous!

Yes, glad to be getting a scan after a week, mind you, I had to suggest it! Getting headaches and tired so just trying to drink plenty.

GlummyMummy Wed 18-Jan-17 13:54:37

Well boy am I glad I requested an earlier scan, lining after a week on progynova is 8.4mm! Couldn't believe it, was fully expecting them to say I hadn't responded. I'm now on a dose of 8mg a day and ET booked for a week's time. Start cyclogest tomorrow and stop down revving tonight.

Does anyone know what happens with lining in cyclogest...will it continue to thicken any further or is 8.4 best its going to get?

All I need now is the embryos to thaw, they aren't great quality so not sure

GlummyMummy Wed 18-Jan-17 16:44:51

Oops, down regging, not revving! Autocorrect -aargh!😃

Blondeshavemorefun Wed 18-Jan-17 16:51:19

I think it will stay at that level now or mine always did

Sure the defrosting will be fine

GlummyMummy Wed 18-Jan-17 17:30:54

Thanks!

Hmm, I'd have ideally liked it to be 9mm but I know beggars can't be choosers!

bananafish81 Wed 18-Jan-17 17:43:37

Great news!!

The measurement after you've started progesterone doesn't matter

It's only the thickness while it's in the proliferative phase under the influence of oestrogen that counts

Once you start progesterone then the lining will change appearance and may well start to compact as it switches from proliferative to secretory. So the thickness may change - but that's fine. You're over the magic 8mm by progesterone initiation and that's what matters

The fact they were gonna leave you for 2 weeks is crazy!!

Sure you don't have anything to worry about with the thaw - the vitrification technology is so good nowadays that the thaw rate is excellent. My clinic said that euploid embryos generally survive the thaw, so anything that doesn't (in a clinic with good freeze-thaw rates who use vitrification) was almost certainly abnormal

Good luck!!

fabulous01 Wed 18-Jan-17 17:49:56

I went abroad for IVF and I got a much higher dose. No side effects but I did come off it gradually and drank lots of water on it
My twins ... are now 22 months old 😀

GlummyMummy Wed 18-Jan-17 18:03:10

Thanks Banana, I'm very pleased it's over 8mm, just can't help but think a few more days on progynova might have got it over 10mm, which was our lining at ET in our successful cycle. Is there a danger it can over-thicken over a certain mm?

Fabulous-congratulations!! What was your lining level?

Crossing everything for these embryos to thaw! We've a 3ab and 3bb so not great quality, all our others transferred were 4ab or 4aa.

fabulous01 Wed 18-Jan-17 19:58:34

I can't remember.... but I didn't have a problem with that. I had a problem with lots of other things though!
Good luck xx

GlummyMummy Wed 18-Jan-17 20:29:36

Was that your first IVF attempt, fabulous?

fabulous01 Wed 18-Jan-17 22:13:30

No. it was my 6 th.....
Hence the dose of progynova didn't concern me. I was on lots of meds. I do remember the uk doctor questioning it but she gave me the prescription for the dosage as it was a pregnancy result and I hadn't got that far before. I fell pregnant at my 5 th attempt but lost at scan. Good luck

bananafish81 Wed 18-Jan-17 22:57:17

Nope too thick isn't a concern - just too thin

Also remember embryo grading is just a beauty contest - it doesn't say anything about their genetic integrity. I had AB embryos that were abnormal and BB that were normal. You really can't judge a book by its cover!

GlummyMummy Thu 19-Jan-17 07:32:21

I do wonder if they could have kept me going a couple more days on the progynova then, to see if it might have gone a bit over 8mm.....

Now having the joys of the cyclogest pessaries, they're weird things aren't they!?!

Fabulous-sorry to hear about your earlier loss, that must have been hard. So pleased it finally worked for you. Toddler twins must be hard work!😃

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