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[RebJT]

Hi everyone

Just swinging by to update the thread.  So I got my Sandrena script, 3mg which is slightly less mg to mg than what I was on on oestrogel.  And .... it blew my socks off, felt unbelieably jittery, had instant vaginal soreness (could be histamine from influx of oestrogen or sudden drop in oestrogen), terrible sleep, massive nigh sweats (again you can get sweats on too much E as well as too little) and generally thrown into chaos.

I am so busy at work and can't afford to drop the ball (or faff about for months with doses) so this experiment was shortlived, I came off Sandrena and went back on oestrogel, hung on til day 12 and tested again, and blood levels down AGAIN to 205!

To recap:
4.5 pumps, day 12, May 2023, E = 1590  (old bottle)
4.5 pumps, day 12 Nov 2023 E = 321 (new cylinder bottle)
5.5 pumps day 12, Jan 2024 E = 271
5.5 pumps day 12, Feb 2024 E = 205

Had a consult with gynae who said a) if enough women are moaning, then in her experience, regardless of what the manufacturer says, they've done something to the product and b) increase the dose and test again and then we'll decide what to do.  Options are retry Sandrena starting on a lower starting dose and titrating (a faff), try patches (ditto -my sis in law does this, she's also a poor absorber and she now takes 2 x 100 patches changed a day early achieving blood levels post early hysterectomy of around 700).

However, I went up a pump (this is incredible to me, I'm on 6.5 pumps, I'm only 51) which did solve the demented vaginal soreness and I feel a bit perkier, but I've now had a short cycle and a horrible clotting manky bleed which would suggest too much sodding oestrogen (which begs the question why is it not showing up in my blood???) - gritting my teeth til testing again in a couple of weeks.

I did find an old bottle with a green lid under my bed (I chuck all my scripts in a box) and tried that this morning, and that's blown my socks off too, so I think it's fair to say, the repackaged product is now duff.

Also, from reading Sandrena reaches peak concentration 6 hours after application, oestrogel reaches peak after 3 - 5 days so I think probably there's a more vertical experience of getting on sandrena.

Also, Im a duffer at science, but from what I'm reading I don't think oestrogel was ever designed to reach youthful levels of E, from reading around the manufacturers say it's meant to achieve blood levels of about 200.  In contrast the manufacturers of Evorel 100 say it's supposed to achieve blood levels of about 370 (which would explain my sis in Law's 700 with 2 x 100) - maybe I'm misunderstanding this and someone better at all this can explain??

See "Pharmacokinetic properties"
https://www.medicines.org.uk/emc/product/353/smpc#gref - Oestrogel "The time-averaged serum oestradiol and estrone concentrations (C average) over the 24hour dose interval after administration of 2.5 g of Oestrogel on Day 12 were 76.8 pg/ml and 95.7 pg/ml, respectively."  pg/ml converted to the UK pmol is 282.

https://www.medicines.org.uk/emc/product/10932/smpc#gref - 100 patch, max level 655, average 382.

Maybe I'm misunderstanding??  Anyway, I'm looking and feeling like a woman with unbalanced hormones and now have the delightful new symptom of constant nagging lower back pain, which given my initial dexa by Prof Studd in 2019 was dreadful, with massive bone loss, I'm not too happy about.

No idea what to do to help myself without totally destabilising myself and kicking off largely controlled histamine symptoms which took years of painstaking effort to get sorted, whilst very carefully managing my HRT!

So that's the news

Reb
x

[Sue1972]

Hi RebJT.

3mg of Sandrena seems an awful lot!

I take 1.5mg daily split into 0.5 at night and 1 in the morning. I have found it so much better than even the old oestrogen bottles.

I hope you find an answer for you soon x

[RebJT]

Hiya

It's all so confusing isn't it, she's working off this which is the BMS guide to dosing https://www.womens-health-concern.org/wp-content/uploads/2022/11/27-WHC-FACTSHEET-HRT-Doses-NOV2022-A.pdf

That says 2-3mg of Sandrena is equivalent to 3 - 4 pumps of oestrogel, and I've been on 5.5 pumps of oestrogel for a good while (up from a very long and stable and happy time on the old bottles at 4.5 pumps)

It's not so much the dose as the time it takes to get the dose right and the accompanying instability (and for me horrible symptoms and struggle to work and focus) that I can't really afford right now.  No idea what to do!

My gyane said she's always happy to prescribe off licence with regular tests as it's just a fact that women absorb differently and NHS cut offs are a bit of a nonsense.

Not that that solves the actual issue!

x

[joziel]

Reb... I'm on 8 pumps of estrogel now.

Look...

If you're in peri, then your own levels are fluctuating massively and testing is going to be very difficult. If you still have usually regular cycles, you need to test during your period when your own estrogen will be very low. That should give you a more consistent reading of what the Oestrogel is giving you. I always test day 3-5 of my period. Unless you did that with all those list of tests, they are pretty meaningless... Testing day 12 is going to give you a LOAD of your own estrogen, often.

Another thing about blood tests... Whilst your ovaries can contribute more estrogen, they can't take any away. So if you are EVER getting low results (like your 205), that's a better indication of what you're getting from the Oestrogel. That 205 might have some from you, still. But you're not getting much from the gel...

Lastly, don't worry about the bleed. It is very normal if you increase (or reduce or adjust) estrogen, that you will get a bleed. That is why bleeding in the first 3 months of starting or changing HRT is discounted. It doesn't mean you are taking too much estrogen. (I bled after increasing to 8 pumps.)

With trying to work out what is equivalent to what, (how much gel equals how much Sandrena etc) all those calculations don't take into account how you (or any woman) absorbs the individual products. So they are really just a broad general gist of what is most average, in terms of what equals what. Really every time you switch to a new product you are starting again with trying to get the levels right going by symptoms and to a lesser extent, bloods.

This is one reason I'm reluctant to change from gel, even though I'm now at the most ridiculous level of 8 pumps. (Which is giving me around 400pmol.) If you'd told me before I started gel that I would end up on 8 pumps, I'd have chosen a different product. But now I'm on 8 pumps and starting to feel like myself again and sleep better, I'm very reluctant to change again.

[RebJT]

Thanks

Yes, it's so frustrating isn't it!  I wouldn't mind if I felt OK! I understand all that, gynae told me to test day 9 but I ended up on 12 as that was the slot I could get, and then kept it the same for consistency, but could change it to earlier in cycle, but my results are consistently low now, after being consistently good (we're aiming for a steady level of north of 600) and more to the point, feeling good.

What I meant about products is I dont' think oestrogel was ever intended to achieve 'good' levels, just to keep women off the deck.  But I'm sitting here now jitterbugging on 6 pumps of the old gel, so I'd say it's defo the product that has changed (maybe some cunning plan by the manufacturer to profiteer on ever increasing doses!).  Do you find the alcohol in it dries your skin, I'm slapping so much on every day, my skin is like sandpaper!

I honestly cannot have any more time off work, certainly not now, I have a very busy job and have far too many plates to spin so even if I was to switch I can't do it now, I just wish it was simpler.  That said my gynae is totally cool with me increasing doses, I just email her, and she adjusts my script.  My only slight worry is I'm really prog sensitive, so having enough P for protection might become an issue as it took me over a year to build my tolerance to 12 doses of utro.

And yes my cycles are bang on 28 days normally, they only tend to get short if I overshoot on the E a bit, but will grit my teeth and test.  No idea what would be day 3-5 now, from teh calendar or the bleed?

Anyway, thanks.  I'm just incredibly frustrated, me getting to the point where I had my life back without catastrophic histamine and mast cell issues, and then getting on a dose that made life worth living has taken forever, I was so bloomin' diligent, I'm quite annoyed that a manufacturer would be so cavalier with women's health (not helped by the patronising nonsense in the Lancet the morning!).

Thanks

Reb
x

[Banjo1973]

Hi Reb,

Sorry to hear things aren't going well. I've been on Sandrena for a few months and I don't feel completely settled.

I was happy on 3 pumps of old Oestrogel (never felt great on even 7 pumps of new oetrogel).

I started in 1.5 sachets of Sandrena, it was better than new Oestrogel, but wasn't enough so ignored advice and went up to 2. I occasionally have hot episodes at night and so have recently have added a 1/4 sachet and that seems to be working for me.

Unlike Oestrogel, I find Sandrena works best when I split the dose.

I wish you luck x

[RebJT]

Hi Banjo

Thanks!  I am just so frustrated with them, as I have other health issues, plus peri triggered mast cell and histamine issues, so it's been a long, long, long road and I was finally doing well, taken on more work (I freelance, don't work, don't get paid, cost of living kicking my butt, I simply cannot go to pieces!!), lost weight, was fit, all other issues under control, was happy and WHAM!  Not to mention the NHS is useless so getting there has cost me literal thousands in private consults, private scripts, private blood tests etc etc.  I think that stupid, patronising article in the Lancet yesterday ('menopause is not a disease' - spare yourself the rage of reading it) was the last straw!  This is our lives, our health, our happiness, our sanity!

I found an old green lid bottle in my box yesterday and took my new higher dose but with the old oestrogel, I felt like I'd had 20 cups of coffee all day yesterday and was awake til gone 4am with REALLY sore boobs and nausea, and just feeling jittery, so I'm absolutely convinced it's the new oestrogel. It's p*ss weak to be blunt!

I am going to hang on to test properly on this new dose (following the advice of the lady upthread, at low E point of my own cycle) and after that I am going to have to do something, as given my years of untreated hyperthyroidism (long story) and then peri woes, I've already lost a lot of bone, and my back hurts, I never ever get back pain (I'm a power yoga devotee) so that is really worrying me, as is the MEH frumpy, miserable feeling.  I just lay awake last night and finally got to sleep once I'd stop churning it in my mind and just decided 'I'm not having this', lol.

Sandrena, at 3mg massively ramped me up, I felt jittery, anxious and wired, but also had immediate vag soreness and huge night sweats for the first time (that could be histamine from influx of E, or plummeting E levels from even worse absorption, no idea) so I'm really scared, but I can't carry on on this rubbish.  I also have a stash of Evorel and my gynae is pretty good, so she'd give me estradot if I asked, I'm just dreading having to throw myself into chaos.  But with levels at 205 at the peak of my own cycle, it's a fair deduction that oestrgel is doing absolutely nothing.

I'm glad you are doing OK,  have you tested your blood levels to know where Sandrena is roughly landing you on replacement?  Did you get any jitters when starting it?  I really hate the revved up chemically feeling.

Thanks

(a sleep deprived)

Reb
x

[Pippa52]

SO agree.  I was on it as I said for over 20 years originally with no problems at all but when I went back on it after the shortages it was a nightmare.  My blood level was only 55 pmol and Meno consult said I might as well not be on HRT at all even though I was on the same dose plus going up higher than I had been over the past 20 years..  The composition has most definitely changed from the original Oestrogel no question.

[RebJT]

Hey

Bless you, that must have been enraging!  And scary!  What do you take now if you don't mind me asking?  Did it take a while to find a replacement?  When I get a bit more time I'm going to read this entire thread, so sorry if you've already said.

And my gynae said that, if enough women are complaining, then no matter what the manufacturer says, they've reforumulated it (I had this with thyroid meds a few years ago, same thing, a tsunami of very ill people all of a sudden - with blood tests to prove it - and total denials from the manufacturers).  I suspect this is about money, partly because women are demanding HRT, and partly because if women need to use more of it, they make more profit.

I appreciate this isn't the (health) point, but despite my lack of sleep I look the best I've looked for months this morning - no crepey neck that was creeping in, skin looks radiant, nice and bouncy, no issues with intermittent constipation, no swollen fingers, no lower back pain, and despite being tired I feel quite chipper and more to the point galvanised.  Absolutely sod this for a game of soldiers!

Because of my job, I write a good campaigning letter so I will be sorting out yellow card, and writing to Besins.

And then I need to work out what I'm going to do, I think patches first, Sandrena made me very buzzy, but perhaps it'd be OK if I started on a lower dose, no idea!

Anyway, thanks for replying, it's not right they're allowed to do this to us and get away with it.  Many women relied on oestrogel for their quality of life.

Reb x

[Pippa52]

Hi RebJT - oh what a roller coaster this all is isn't it.  There is absolutely no doubt that Oestrogel has changed no matter what Besins say.  I too wrote to them complaining and got some standard letter back.  I reported it all on the Yellow card system as well as it really did make me unwell and just reading some of the threads on here about other ladies who have noticed the change in it is proof enough as well.  I was changed onto Estradot and although it has taken a  long while to get to the right dose (I am stupidly sensitive to any dose change) I have been feeling really well the last few months on a dose of one 37.5 patch plus half a 37.5 patch but I change them every other day as they just don't last the 3/4 days for  me personally.  The Meno consultant I see was more than happy with this and said it is about how you feel and far less than the actual blood level of oestrogen.  I found  the dose I was  originally recommended  of a75 patch way too high for me personally.

[Banjo1973]

Hi Banjo

Thanks!  I am just so frustrated with them, as I have other health issues, plus peri triggered mast cell and histamine issues, so it's been a long, long, long road and I was finally doing well, taken on more work (I freelance, don't work, don't get paid, cost of living kicking my butt, I simply cannot go to pieces!!), lost weight, was fit, all other issues under control, was happy and WHAM!  Not to mention the NHS is useless so getting there has cost me literal thousands in private consults, private scripts, private blood tests etc etc.  I think that stupid, patronising article in the Lancet yesterday ('menopause is not a disease' - spare yourself the rage of reading it) was the last straw!  This is our lives, our health, our happiness, our sanity!

I found an old green lid bottle in my box yesterday and took my new higher dose but with the old oestrogel, I felt like I'd had 20 cups of coffee all day yesterday and was awake til gone 4am with REALLY sore boobs and nausea, and just feeling jittery, so I'm absolutely convinced it's the new oestrogel. It's p*ss weak to be blunt!

I am going to hang on to test properly on this new dose (following the advice of the lady upthread, at low E point of my own cycle) and after that I am going to have to do something, as given my years of untreated hyperthyroidism (long story) and then peri woes, I've already lost a lot of bone, and my back hurts, I never ever get back pain (I'm a power yoga devotee) so that is really worrying me, as is the MEH frumpy, miserable feeling.  I just lay awake last night and finally got to sleep once I'd stop churning it in my mind and just decided 'I'm not having this', lol.

Sandrena, at 3mg massively ramped me up, I felt jittery, anxious and wired, but also had immediate vag soreness and huge night sweats for the first time (that could be histamine from influx of E, or plummeting E levels from even worse absorption, no idea) so I'm really scared, but I can't carry on on this rubbish.  I also have a stash of Evorel and my gynae is pretty good, so she'd give me estradot if I asked, I'm just dreading having to throw myself into chaos.  But with levels at 205 at the peak of my own cycle, it's a fair deduction that oestrgel is doing absolutely nothing.

I'm glad you are doing OK,  have you tested your blood levels to know where Sandrena is roughly landing you on replacement?  Did you get any jitters when starting it?  I really hate the revved up chemically feeling.

Thanks

(a sleep deprived)

Reb
x

Hi Reb,

I'm doing OK on Sandrena. Not brilliantly like I was in 3 pumps of old Oestrogel, but I'm still at that adjustment phase. I'm having bloods done next week so I'll know more then. Interestingly I started a new tin of Tostran (testosterone) in December. That too is different to my old tin (miles weaker) so I'm having to adjust that too. It's a nightmare of guess work and I just wish I could go back 12 months and stockpile the good stuff!

I think 3 grams of Sandrena was probably too much too soon. I started on 1.5 (and was on 6/7 pumps of Oestrogel). After a few weeks I went up to 2. Was ok on that but not amazing. I've upped by a tiny amount (and have also increased testosterone) once I get my bloods back I can decide where I go from there.

Reb, unfortunately we don't have no time machine to get old Oestrogel!!! So I would suggest trying Sandrena again, but 1.5 for s while then adjust.

Good luck x

[RebJT]

Hi both

Thanks for your comments, Thank God we have each other!  My sleep is still rubbish quality but slept through the night at least.  So many people I speak to are having this issue.  I've just bought some digital scales (a fiver on Amazon) just to satisfy my own curiosity re dose size, but I think the key issue is the formula (this is what my gynae said, they'll have changed it) - perhaps they're fobbing off oestrodose as the real thing, who knows?  I'm now on 6.5 pumps and hanging on to test.

Glad you are now steady and feeling good now Pippa, sounds like you were on 3 pumps of gel, but on just a smidge over 50 on the patch, that's good to know as my 'sweet spot' on gel was 4.5 so maybe an 100 would hit the spot if I absorb OK.  And Banjo, if you feel comfortable, be interested to know your bloods next week and if they've picked up on Sandrena.

I'm just worried about the faffing, it really knocks me around the instability, and I resent it too! 

Anyway, I wrote a humdinger of a letter (with my feminist hat on, of the 'I'm at the peak of my career, I haven't got time for this nonsense, I've put my money and trust in yor product and do expect it to be repaid' variety) to Besins and had a reply less than 24 hours later, which I copy below.  I've also had another email asking me for the batch numbers (which misses the point, it's the entire thing since that change) and they'll collect from my pharmacy if I send them back.

Besins say:
Thank you for taking the time to share your experience with us. We are sorry to hear of the challenges you've faced while using the cylindrical Oestrogel (estradiol) Pump-Pack 750 micrograms/actuation gel. We appreciate your feedback, and we understand the impact it has had on your quality of life.
We take your concerns seriously and want to assure you that we are actively investigating the issues you've raised. Quality and consistency are paramount to us, and we are committed to addressing any discrepancies in the dispenser functionality and product performance. We have already initiated a thorough investigation to identify any underlying issues.
We have also forwarded your details to our Drug Safety and Product Quality teams. They will contact you to gather more information concerning the report you have made regarding the return of symptoms while using the cylindrical bottle. This information will aid our investigation of your case.
Please be assured that we take your concerns seriously and we appreciate your patience as we work to address these issues.

Make of that what you will - I'm tempted to reply, saying just change it back!
x

[Sue1972]

I reported this last August and received this reply,

We take the safety and quality of our products seriously. As part of a pharmaceutical company’s statutory requirement imposed by the regulatory authorities, Besins Healthcare is required to follow up on any suspected adverse events that we become aware of concerning our medicines. This helps us to monitor the safety profile of our medicines.
 
For this reason, it would be useful for Besins Healthcare UK to contact your doctor or another healthcare professional regarding this report.

It seems they take it so seriously that they are happy to keep supplying the same inferior product for months and months!

I gave them permission to contact my doctor and still nothing has changed

It is infuriating that they seem to just be able to keep fobbing us all off with no real action!

[RebJT]

I know

I mean there is a possibility, at the scale this seems to be, that they're scrambling around but still acting in good faith, could it be a bad batch, a duff load of wholesale raw ingredients, a manfucturing error, a formula change they thought would have no impact but did, but if they know anything, they should be recalling product or swapping back to previous container until the problem is solved or whatever it is.  I suspect it's widespread, my guess is ingredient change, worsened by inferior dispenser, that's a major headache for a company.

My entire life right now rests entirely on being able to function through the menopause, it's not like it's a pair of shoes, or a faulty washing machine, a pain but not life wrecking! Same for all other women in this boat.  It's not a little thing, or a minor glitch, it's fairly major.  If it was a diabetes drug or something, there'd be uproar, it's the casual sexism of it all that really grinds my gears.

I've dug two other cannisters out of the recycling, plus the one I'd saved, the rest I've already thrown away.  Not sure how much help it'll be, seeing as I use one cannister every ten days ish, and the slide into symptoms will have been gradual, not sure you could point to one bottle and say 'this is the culprit'.

x

[joziel]

Sometimes, with the new pump mechanism, there's some kind of an air fart thing that happens and I don't get a full dose. If it is a tiny dose, I can see that easily. But sometimes it's not very clear this has happened. So I wonder if the pump is just crap...