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Author Topic: Where do I go from 100 patch?  (Read 3619 times)

Tc

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Where do I go from 100 patch?
« on: April 08, 2019, 11:50:03 AM »

Hiya ladies. I'm now on 100 estradot patch. I noticed a slight improvement the first 2 weeks but it hasn't lasted. I still feel eastrogen deficient. my body is getting drier and drier inside and out. Hot flushes are still happening daily although not as frequent but  getting worse again at night Bladder is awful.. anxiety has not improved one bit and my mood is consistently low and depressed.
Where do I go from 100 patch? Is this the best its gonna get cos if that's the case I dont see the point in carrying on with it.
I hope it's not an absorption problem again like i had with the eastrogel but it would seem it might be. Why dont I absorb. It's so frustrating.

I know some ladies are on higher dose than 100
. Is it the case of keep trying different things until all else has failed before doc will up the dose?
Would a higher dose increase risks? . To  my mind  if I am only absorbing say half the dose anyway it would be no riskier to go up to 200.

I would like to continue with HRT but surely it has to be at a dose that at least shows some improvement or what's the point in me using it at all.
Feel so dejected.especially as my gynae is so anti hrt she probably wont hear of an increase.
So I'm stuck..

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Joaniepat

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Re: Where do I go from 100 patch?
« Reply #1 on: April 08, 2019, 12:20:04 PM »

I've had the same problem with absorption and didn't get enough from either of the gels. I only got up to 140 pmol/l on 2mg Sandrena. Currently on 125 Estradot but won't find out my serum estradiol level until next week, so will update then. Someone here is on 200 Estradot. Can you get your seem level checked so that you know exactly what you are up against?
 
JP x
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Tc

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Re: Where do I go from 100 patch?
« Reply #2 on: April 08, 2019, 12:40:20 PM »

Joaniepat. My levels will be checked in May by which time I will have been on the estradot for 3 months.
After three months on 4 pumps  eastrogel they remained the same as before i started it which was 129pmol.indidntcabsorb it at all.
Do you notice a a  improvemet in symptoms on 125 compared with 100?
Thanks for your replyx
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Saffy

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Re: Where do I go from 100 patch?
« Reply #3 on: April 08, 2019, 03:02:47 PM »

I went from 100 to 200 Estradot and my Oestradiol levels leapt from around 100 to 257 pmol/l  ;D. Apart from 4 months of breast pain (now mostly subsided), I couldn't tell the difference  ::).

Having tried two types of patches and Oestrogel my meno specialist thinks the only way to directly raise my levels higher now would be an implant. As I have high SHBG, pills are out as they tend to raise it higher.  We are trying testosterone first as that can lower SHBG and 'free up' more oestrogen. Allegedly...
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Tc

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Re: Where do I go from 100 patch?
« Reply #4 on: April 08, 2019, 03:31:05 PM »

Saffy.  "Leapt to 257" it's so frustrating is t it. Especially when I have read we need higher levels than that for the protection it offers against longer term side effects. I've just turned 54  and am in surgical meno so I realy feel I need HRT. Its soul destroying to have so many symptoms all at once and so severe.and nothing seems to even touch it.

Interesting you mentioned about SHBG.ive heard other ladies talk about that b4.  Just checked and my doc hasn't  put that on my next blood test form. I have testogel ready to start but I have held off as I'm worried with such low E level  it will just convert to E and get no benefit. But if it lowers SHBG then I might get more out of the patch.so maybe i should just start it same as you.
I wonder why some of just dont absorb. Maybe SHBG is a possible cause. I'm just willingy my body to cooperate all the time but I just seem to have got worse and worse since my op.

I have just read another thread where a lady has been put on 200 post meno. I'm thinking out of desperation I might go up to 150 by cutting a patch in half and then fess up to gynae on next visit. Dont want to mess up my blood test though.
I also wonder if the continous utrogestan 100 might be counteracting any benefits  from E in terms of mood but then it would t counteract the effect of E on dryness, hot flushes and hair loss would it? That's got to be down to not enough E. I wonder why my doc is so obstinate about continous P when we wouldn't have it continuously high during normal cycle. I'm confused about whether I would be better with a bleed
I feel utterly at a loss with it all at the moment.
I wish I could go back to this time last year and hang on to my ovaries for all I'm worth.!!!

Do you know how the implant works differently to patch to raise levels? I dont know anything about implants.

 I'm sorry you are suffering with non absorption  but it helps to know I'm not some strange case. I have been  thinking "what is wrong with me not responding to treatment like this. Am I some sort of medical freak"
So thank you for your reply and sorry mine is so long. I'm trying to make some sense of it all.  Iwish you well. Xxx
« Last Edit: April 08, 2019, 04:20:45 PM by Tc »
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Joaniepat

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Re: Where do I go from 100 patch?
« Reply #5 on: April 08, 2019, 04:23:28 PM »

Joaniepat. My levels will be checked in May by which time I will have been on the estradot for 3 months.
After three months on 4 pumps  eastrogel they remained the same as before i started it which was 129pmol.indidntcabsorb it at all.
Do you notice a a  improvemet in symptoms on 125 compared with 100?
Thanks for your replyx

I have never used 100 Estradot, only 125. I've used 3 pumps Oestrogel, then switched to 2 sachets Sandrena, then switched to 125 Estradot.

My main symptoms are joint pain and VA. The joint problems did start to return when I switched from Sandrena to the patches, but I added a pump of Oestrogel for a while, stopping this about three weeks before I was due to get bloods taken, so as not to skew the results. Joint wise I am still OK without the Oestrogel. As to the VA, , it's mostly manageable just now, as it's mainly vulval soreness. The idea is that it may improve if I can achieve therapeutic oestrogen levels. I'm a bit sceptical about this and think Vagifem and the Estring are the only things that will keep it under control (I use both).

The other reason I use oestrogen is to try and prevent my osteopaenia developing further.

When I was on Oestrogel, I never used to rub it in well but followed the instructions with the product. As you probably know, Louise Newson now advises her patients to rub in until dry, and this is what I did when I added the one pump to the patches. Dunno if that made any difference.

I seem to remember you are seeing a urogynaecologist. Is this the one who is anti HRT? Could you not see a proper menopause specialist as well?

As to testosterone, I was prescribed this at the Chelsea & Westminster, and getting oestrogen levels up first wasn't mentioned! I think it improved my stamina.

JP x
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Tc

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Re: Where do I go from 100 patch?
« Reply #6 on: April 08, 2019, 04:42:09 PM »

Thanks joaniepat
I tried everything with the eastrogel even the gynae said it seems like a no go for me.

I'm under an oncologist gynae. They did my op. But as a department they seem very anti HRT
I think meno clinic is the way to go now.

I think I'm going to experiment  with 150 by cutting patch in half and as you say I can go back down before bloods so the result isnt skewed. But if 150 helps and I tell her that I'm pretty sure shes gonna be horrified judging by her previous reactions.

I can see why its extra important for you to get levels up with the osteopenia.

I'm also inclined not to believe what  i was told about optimum blood levels of E sorting out my VA. There is lots of evidence to the contrary. I use vagifem and estriol.

Good to hear the T has improved your stamina. Is it helpful with your joint pain too or is it just muscles it helps.?
I'm also interested to see saffy mentioned the implant. At least there may be something else to try if all else fails.
Thank you for your reply and best wishes to youxxx
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Saffy

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Re: Where do I go from 100 patch?
« Reply #7 on: April 08, 2019, 04:45:10 PM »

Oh yes, it's endlessly frustrating, although it does help to know we're not freaks  ;D. I'm 53, still have all my bits and I'm definitely not suffering anywhere near as badly as you and many others on here. I haven't accepted that this is as good as it gets but at least now I feel my current levels are sufficient to stave off osteoporosis (just) and possibly some longer term issues. What I can't get to grips with is the fact that I have far less energy and more aches and pains than my 84 year old dad who is still going to the gym, walks for miles and doesn't collapse in a heap afterwards!

Not sure about the Oestrogen levels 'required' before taking testosterone. My specialist seems OK with 257, wasn't with 100 but hasn't been specific (are they ever?!). She was definitely relaxed about going upto 2x100 patches 'though - very much emphasised to my GP that the only thing that counts is symptom relief and actual measured levels.

Getting the SHBG tested is useful as, together with testosterone, it gives a good snapshot of what is actually happening re: absorption (and you can use it to calculate the Free Androgen Index which is a better indicator of circulating testosterone levels). Not sure my GP would have tested for this if it wasn't for the specialist requesting it 'though.

I must admit I haven't looked into implants as I'm pretty reluctant to have anything I cannot remove easily myself  :-\ . I think a few people on here have had them and there can be issues with them running out early or a massive initial surge of oestrogen. I guess they work by entering the blood stream directly, bypassing the skin? Might have to explore further. They seem to be mostly only offered privately 'though, so that plus the constant need to have them replaced is putting me off too. Urgh it's such a pain!

I do hope you find some relief TC as you seem to be having such an awful time of it  :(.

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Tc

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Re: Where do I go from 100 patch?
« Reply #8 on: April 08, 2019, 04:54:34 PM »

Thanks saffy. It helps so much to get others experience
Did you see what JP just said about stamina? Maybe the testosterone will help you with that too.
I have a 79 year old dad who is exactly the same touch wood. He puts me to shame. Every other day he says to me "why dont you go and have a walk round the park". I can just about drag myself out of bed and get a shower!!!

Have you started the testosterone yet?
Xx
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Saffy

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Re: Where do I go from 100 patch?
« Reply #9 on: April 08, 2019, 06:24:44 PM »

Some stamina would be great, in fact any stamina at all TBH  ::). No sign of it yet 'though - have been on testogel for about 6 weeks, so still early days.

I'm still dragging myself around like an old woman and the brain fog/concentration is dire. Managed 40 minutes of gentle yoga plus some (very) basic body weight stuff on Saturday and needed a lie down and a snooze after! Today I still feel like I've just got off of a horse  ;D.
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Tc

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Re: Where do I go from 100 patch?
« Reply #10 on: April 08, 2019, 06:31:09 PM »

"Just got off a horse" . Oh for the days when I felt like that for a good reason!!!
At least you managed some yoga  I've given up completely.
How often are you taking the T.?
Xx
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Saffy

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Re: Where do I go from 100 patch?
« Reply #11 on: April 08, 2019, 07:17:41 PM »

The yoga is a bit sporadic - I'm lucky if I can manage once a week but my hips and back were starting to seize up from sitting about so much. Can't win  ::).

I take a pea-sized blob of Testogel daily - one sachet is supposed to last 10 days but portioning it out is a bit hit and miss so often it lasts a couple more days.
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Tc

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Re: Where do I go from 100 patch?
« Reply #12 on: April 08, 2019, 07:34:37 PM »

Due to a mix up I've got both the sachets and pump gel. Dont know what's more hit and miss as one punp of the gel is far too much so I'd still have to portion it out and the pharmasist said "you might be getting more carrying agent than active Ingredient.  I guess I can only try.

Once a week is better than nothing saffy.well done for finding the motivation xxxx
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NorthArm

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Re: Where do I go from 100 patch?
« Reply #13 on: April 08, 2019, 10:36:07 PM »

Hi Tc

Have you thought about having a Mirena inserted? The progestin in it apparently has a super high affinity for SBHG, which is why it can be so successful in conjunction with a patch. I had one inserted a week ago, and I know it's early days, but I've felt like the patch (100mcg Estradot) is working better, in that I feel calmer and more in control. I also used testosterone, which did help, a lot, but feel as though the Mirena has been the missing piece of the puzzle hormonally xx
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