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Author Topic: Arrrgg Sandrena not going well!!  (Read 4453 times)

joziel

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Arrrgg Sandrena not going well!!
« on: July 27, 2024, 12:36:56 AM »

Well it’s 1.15am and all my night time symptoms are back. I don’t know that I can continue with Sandrena as likely I’m going to get zero sleep…

I’m on 4mg Sandrena which is supposed to be 8 pumps of Oestrogel. I was on 12 pumps of gel but my serum estradiol was the same as 6 pumps at 328pmol so we weren’t sure which dose to match.

We are trying to get me up to 450-650. I’d also stuck a 50 patch on this last two weeks which I thought helped…

What am I going to do? I can try increasing Sandrena. If I go back to gel I need to ask my NHS GP to switch back again. And 12 pumps isn’t practical. And every time I change something via Newson it costs £££ to see the doctor.

I wish someone would just give me access to everything so I can figure this out myself. I have 3 boxes of 50 patches and 4 bottles of gel and a ton of Sandrena.

I just got up and put 4 pumps of gel on. So that should bring me to 12 pumps total if 4mg Sandrena is 8 pumps of gel!!!!?

How hard can this be…..!!! I’m supposed to stick to 4mg for a month but if it’s going to mean zero sleep I’m not doing that, I’d rather go back to gel. Should I;

1) Just increase Sandrena to 6mg? (12 pumps equivalent) Or 5mg?

2) Increase and split AM and Pm? ( it takes ages to dry which is hard at night)

3) Switch back to gel and call NHS GP on Monday and make appointment with Newson to see if I can introduce and increase patches and find some patch/gel combo that works…  I haven’t explored patches higher than 75.

4) Ask to switch totally to patches at high dose. (300??)

I feel crap because it’s only the first night on Sandrena and I know we’re supposed to trial each dose for 4wks but I just can’t do it. It means no sleep, hypnic jerks, heart beating loud and fast…

I also feel like I should trial what Newson prescribes before asking my NHS doctor for it because I really don’t want her to start objecting to the high doses from Newson or me asking for changes. I can’t afford to pay for such high doses privately so need the NHS on board.

Off to take a trazodone now…

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Gnatty

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Re: Arrrgg Sandrena not going well!!
« Reply #1 on: July 27, 2024, 06:07:38 AM »

Hi Joziel, I'm sorry you have had such a lousy night. I don't know if I this applies to you but had there been a time when you felt better on a lower dose of oestrogel before the different bottles etc were introduced? I'm only wondering whether for example you had been ok on the old bottles at say only three pumps of gel then that equivalent on Sandrena would be much less than 4 mg. More like 2mg for example. So you might possibly have given yourself a massive hit?
The other possibility is I think with Sandrena some people find it better splitting the dose too as it does seem to absorb really well and this can iron out peaks and troughs. So I agree this would definitely be worth a try. Also... If you feel ok during the day but it's the nighttime that's haywire then to me that's suggestive of fluctuation due to a big hit of oestrogen first thing then your levels are dropping at nighttime and your body doesn't like it?
It would be a shame for you to have to give up after only one day as any swap will take time to settle, although a bad night is enough to make you doubt yourself.
I switched to Sandrena after being given oestrodose which brought a return to brain fog etc. The clarity quickly came back and i felt much better. However  I thought the Sandrena was then causing me palpitations so switched back - big mistake! I am now settled back onto Sandrena, splitting the dose evenly - i think this really helps deal with fluctuations and I sleep much better at nighttime too. This is the best I have felt so far along this journey.
I don't know whether any of that is any use to you.
Sorry, a lot of waffle there. If it were me, I would split the dose first before deciding to increase as you might get into more of a pickle. But whatever you do, expect a bit of a bumpy ride while your body adjusts. Perhaps keep a diary while you are swapping too as this might make it easier to understand what's going on. x
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Kathleen

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Re: Arrrgg Sandrena not going well!!
« Reply #2 on: July 27, 2024, 07:12:13 AM »

Hello Joziel

I have been on Sandrena gel for some time and I agree that it takes longer to dry.

Perhaps the easiest thing to do is to increase the sachets to the equivalent of twelve pumps of gel and see how that goes. This should mean you are back to your previous dose of Oestrogen and if that works at least you will resolve your night time symptoms. With this experience you can then approach your GP and/ or Newson and work out a plan for splitting the dose.

I am sorry that I can't be of more help and I do sympathise.

Take care and sending hugs.

K.
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CLKD

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Re: Arrrgg Sandrena not going well!!
« Reply #3 on: July 27, 2024, 07:29:16 AM »

I am so sorry U feel uneasy on this, U R always so helpful to Members on the Forum.


 :foryou:

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sheila99

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Re: Arrrgg Sandrena not going well!!
« Reply #4 on: July 27, 2024, 07:47:08 AM »

Might be getting close to time to admit defeat and try oral? Perhaps try the equivalent of 12 pumps first but it's looking as though sandrena won't be any better than anything else you've tried.
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joziel

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Re: Arrrgg Sandrena not going well!!
« Reply #5 on: July 27, 2024, 08:19:13 AM »

I agree Sheila, I’m going to need a high dose of anything transdermal I think. I don’t want to try oral until I’m off the thyroid meds because those raise SHBG and so does oral estrogen. So I might get all my estrogen bound and unusable. But if this continues I’ll go back to the Oestrogel whilst I come off thyroid meds….

Last night at about 2am, I put 4 pumps of gel on & took a trazodone. By 3am I was asleep and then slept well (deeply, restfully) till 9am. I just woke up. I don’t think that was the trazodone because it only puts me into a light and crap sleep if the estrogen isn’t right.

And I agree with splitting the dose. But this is looking like being on 6mg Sandrena and splitting that. Where can I apply it? I don’t have another shower at night and I don’t want to reapply over the morning dose… I also don’t want to use my blood draw arm in case I contaminate it for draws.

Yesterday I did a sachet and a half on each inner thigh and a sachet on right outer arm. I don’t see how to stick to their recommended sites if I’m going to increase. I can just apply it elsewhere on my thighs, where I applied the Oestrogel…? Or maybe upper inner thighs and arm in the AM and lower inner thighs and arm in PM?

This is all made worse by how complicated it is to switch products as I have to get my Newson doctor involved each time (expensive) and then get her letter to my NHS GP and then make an appointment for her to approve the change and update my repeat prescriptions.  ???

Anyway… going to increase Sandrena to 6mg and split the dose. This won’t be an increase on my 12 pumps though. I will need to go higher if I absorb these two the same. As 6mg = 12 pumps. So this really isn’t practical is it?? Because I still wasn’t in this magic 450-650 range even on 12 pumps. Is it worth even trying this really is my question…. Or am I just wasting time and should go back to Newson doctor… I feel like everyone is going to tell me to go away and try Sandrena for longer though.

« Last Edit: July 27, 2024, 08:50:01 AM by joziel »
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sheila99

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Re: Arrrgg Sandrena not going well!!
« Reply #6 on: July 27, 2024, 09:33:54 AM »

Is an implant a possibility?
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joziel

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Re: Arrrgg Sandrena not going well!!
« Reply #7 on: July 27, 2024, 10:24:34 AM »

Sheila, the only thing I know about implants is from the US Facebook groups I'm on. They don't recommend them, because you can't adjust anything once one is in. They prefer injections. But that doesn't seem to be an option in the UK. I think I'd be too scared to try an implant. I don't know if Newson even offer them.

I think I should next investigate higher dose patches. I only got up to a 75 patch because my estradiol was then around 230 and I decided I wasn't absorbing patches well and I'd try the gel. I didn't know then, that I don't absorb anything well. But 3x 100 patches for eg would be a lot easier than all this gel. But I probably have to make a token effort of trying this Sandrena situation a bit longer.

Dotty, that info is very rough - and wrong. Look at the 'Standard dose' column in the same document: 2 pumps of gel = 1mg of Sandrena.

If that's the case then:

4 pumps of gel = 2mg Sandrena
6 pumps of gel = 3mg Sandrena
8 pumps of gel = 4mg Sandrena
10 gel = 5mg Sandrena
12 gel = 6mg Sandrena
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Banjo1973

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Re: Arrrgg Sandrena not going well!!
« Reply #8 on: July 27, 2024, 11:53:59 AM »

Hi Joziel,

I know the standard equivalence is 2 pumps = 1 sachet...

However, 1pump is 0.75mg of estradiol, so those standards don't really stack up, especially for the higher doses.

Obviously there are no exact equivalents due to absorption etc.

4 pumps of oestrogel gives (0.75 × 4) 3mg of estradiol. This, therefore would be the same as 3 sachets of Sandrena (not the 2 sachets stated)

One forum member suggested this is down to NHS cost cutting rather than absorption issues. I tend to agree.

I also agree taking a dose at night to try to help sleep.

Good luck with this x
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Mary G

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Re: Arrrgg Sandrena not going well!!
« Reply #9 on: July 27, 2024, 03:19:02 PM »

joziel, have you worked your way through all types of oestrogen gel available in the UK?  In theory they are all supposed to be the same but in reality they are not.  I've personally used Oestrogel and Estrogel in the UK but now I use a Spanish brand called Oestraclin which is very good.
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joziel

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Re: Arrrgg Sandrena not going well!!
« Reply #10 on: July 27, 2024, 11:00:28 PM »

Banjo, this is interesting but my sleep deprived brain is struggling…

If 4 pumps of gel is 3mg Sandrena, 8 pumps is 6mg… right?

So as I was only able to absorb up to 6 pumps of gel (results about the same 325pmol for 6 and 12 pumps), I should be around that amount now…

Today I did 3mg AM and 3mg PM. Fingers crossed…. My symptoms are all at night.

Mary as far as I know we only have Oestrogel and Sandrena in the UK. There’s Lenzetto (spray) but it’s pretty weak and I seem to need such a high dose it probably wouldn’t be practical.
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joziel

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Re: Arrrgg Sandrena not going well!!
« Reply #11 on: July 28, 2024, 07:19:08 AM »

Better night. About as good as 12 pumps of gel. 😂 Slept well till 4am. Then woke very hot but not sweating. 🥵 (This is because I get inner tremors in my sleep which act like shivering somehow and make me hot.). Put the fan on and managed to go back to sleep   Not as good sleep after than but managed till 8am. Woke at 8 to find my heart beating fast (90bpm).

This is how things were on the gel too - and why we wanted to get levels higher to see if we could fix things more. I don’t think I can go higher than 6mg Sandrena so at this rate will end up trying high dose patches next… 😬
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joziel

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Re: Arrrgg Sandrena not going well!!
« Reply #12 on: July 30, 2024, 01:10:17 AM »

Hello 2am.  ;D ;D

Well this Sandrena thing isn’t going well. Practically it takes about 45min-1hr to dry and not be sticky. So I have to go upstairs about an hour before bed to put the evening dose on.

And all my night time symptoms have come back, including the very cold feet which need an electric blanket for 2 hours even in 28C 😬 Then the starting awake every time I drift off and the inner tremors. I know people might say to give it longer, but this is hell.

I just stuck a 50 patch on and will go back to 12 pumps of gel tomorrow and make an expensive appointment with the Newson dr again.

I am thinking maybe as my estradiol levels were the same on 12 as 6 pumps, that I should gradually decrease gel back to 6 and try increasing patches with a view to a gel and patch combo. Will discuss with doctor.

Are Estradots still having problems at the mo? They’re what I was on before…
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Kathleen

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Re: Arrrgg Sandrena not going well!!
« Reply #13 on: July 30, 2024, 07:35:22 AM »

Hello Joziel

I am sorry that you are still having so much trouble.

For comparison  I use one 1 mg  Sandrena gel and I find it takes about 25 minutes to dry. The fact that yours takes so much longer may of course be due to the larger quantity or may indicate that you are not absorbing very well, which I guess you know already.
My most recent experience with pumps was that the gel was much more liquid and dried really quickly.

If gel in any form isn't suitable for you then a return to patches may be you best option.

Wishing you well and take care.

K.
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joziel

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Re: Arrrgg Sandrena not going well!!
« Reply #14 on: July 30, 2024, 10:15:49 AM »

That's very interesting Kathleen. Do you mean your Sandrena is totally dry and not sticky after just 25mins? That's very different to me. It shouldn't make any difference that the quantity is larger because I'm not applying it over itself - each sachet is applied to its own area.

For sure, Oestrogel is much quicker.

I am writing an email to my Newson doctor. I dread how much all this is going to cost and getting my NHS GP to continue to change my prescription via letters from Newson...
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