Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Tc on October 09, 2019, 05:11:48 PM
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Hiya ladies.
Something strange has happened.
Latest blood tests showed my E had fallen yet again. 2x100 patches for months and it's got lower with every test. It's now 140pmol
But the weird thing is FSH. My FSH has fallen very low. The doc was looking at the screen puzzled.
its 7 IU/L. She said that's very very low for someone with no ovaries". It should be above 30 can go up to around 100. Post meno. She said it was very surprising and doesnt understand it. Shes never seen it before. I have an appt with C and W so she said let's see if they can sort it out!!
As I understand it with low eastrogen the pituatry gland kicks out more FSH to try to stimulate the ovaries. HRT hasnt elevated my El evels. 140pmol is pretty low and should be paired with a rising FSH. Not one that has fallen through the floor.
What the heck is my body doing?!!!!
Help please!!!
Xxxx ???
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Hi Tc,
Have you been tested again for SHBG?
I think this could be linked to Gilbert's? Do you have liver tests results?
BeaR.
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Hi bear. They didnt do liver. SHBG is not back yet.
I've just dug out a couple previous tests
In February (6 months post BSO)
FSH 35.9
Estradiol 211 pmol
In May:
Fsh 12.5
Eastradiol 175 pmol.
Now its FSH 7 and E 140.
FSH shouldnt fall alongside eastrogen falling should it?
My E is below post meno but my FSH is not. And by quite a big margin. It's the opposite of what should happen.
Bit worrying.
Thanks. Xxx
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Hi Tc
The control of FSH is very complex - just had a quick look at a few papers. Looks like there are other hormones involved some of which would have been produced by the ovaries. Maybe because you no longer have ovaries the standard responses don't occur? Also I've read that FSH is very sensitive to changes in estradiol, and also that progesterone has an effect on FSH so your result may be partly due to whether you were taking progesterone at the time?
Really I would not worry abut FSH at all, because there is no feedback loop going on that involves the ovaries. Time since surgical menopause may also be a factor. Remember also that a spot measurement of estradiol isn't necessarily accurate although you can build up a rough picture over time like you are doing.
In your case the most important thing is making sure you have enough oestrogen to eliminate your menopausal symptoms. 140 is pretty low but not below post-menopausal range (although this can be variable). - probably above approx the high end of this (without HRT) - but of course you are taking HRT so should be higher, but as you are lacking in ovaries this is maybe a factor?
Try not to get hung up on the FSH as you will only tie yourself up in worried knots trying to understand - and concentrate on making sure you are getting a decent dose of oestrogen if you can. Hopefully the C and W will be able to explain and reassure you!
Sorry I can't be of more help - not long to go now until your appt :)
Hurdity x
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Just read this in Nice guidelines about FSH:
The blood test measures a hormone called FSH (follicle-stimulating hormone). FSH is found in higher levels in menopause. You should not be offered this test if you are taking a contraceptive containing oestrogen and progestogen or high-dose progestogen because the contraceptive changes your natural FSH levels.
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Hi tc
I too have no ovaries and same situation as u my Estrogen levels keep dropping ! Not sure about fsh but shbg has also dropped which should be higher if Estrogen lower and testosterone has also dropped ! Bodies are strange but I cannot seem to feel ok on hart so think I'm going to stop it only 40 but I'm sick of spending days feeling rubbish I wish they would put me on the pill cause didn't have issues before and as the pill overrides the ovaries and forces the ovaries to sleep and not produce hormones I would of thought this would be better option for me where as hrt isn't as strong as it supplements existing hormones which I don't have .
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Thanks hurdity and dotty. I wouldve thought if the HRT was going to affect FSH kevels if would be to decrease them by way of increasing eastrogen. Which mine hasnt.
Low FSH post oopherectomy can be considered cause for concern regarding ovarian remnant syndrome. I have been getting pain which feels ovarian on the side where the cyst was. But doc said although low FSH can be a sign , my eastrogen level would be higher if it was Ovarian remnant.
I hope I might get some answers next week and yes hurdity maybe finally get some eastrogen.... Please!!! 140 isnt below post meno level, i shouldnt have said that. I believe that's something like under 110. mines not far out of the realms of it particularly considering the high E dose
I'm putting all this eastrogen in and i swear its disappearing somewhere.😀 lol.
Sammie.
I know how it feels when everything just suddenly shuts down and T plummeting doesnt help either. Unlike naturally menopausal women whose ovarian androgens convert to eastrogen we are left with just our adrenal glands production. It does seem harder to sort HRT out in surgical meno. I'm hanging on because I havent exhausted all options yet. I dont believe you have either.
In researching surgical meno I've read many times about how the doses of HRT used by naturally post meno ladies are not high enough for younger surgically meno ladies. I dont know about taking the pill post meno. But Can you increase your current dose.
I have looked at it this way. With both the gel and patches I increased dose to the maximum for at least 3 months each time before I could truly say it wasnt working and then change to something else.
Xxx
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Hi tc
I've just encreased the gel to 3 pumps so will stick with that for a bit and see but do think I need progesterone and testosterone too x
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Hi TC, I don't have an answer regarding your FSH or estrogen levels but I'm sorry you have to worry so much. If you feel like you do hormones consume your live and that just should not happen. I think your app with C and W ( in 7 days if I'm correct) will give you some answers. Just want to let you know that I'm thinking of you 🌷
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Thank you Alice. How kind of you.
You are right. In a way I wish she hadn't said it. Sick of the sight of doctors scratching their heads.
Ovarian remnant isnt common but it can happen and it's not that easy to fix. I think it's more likely an issue with the pituatry gland but maybe there is a simple explanation. Hope so.
My folic acid was very low again which shes given me tabs for. So that's an answer to my tingly hands and feet. Goes to show Not everything is hormone related but we do tend to think that way dont we. It's understandable realy. That's why this forum is so good. We all have panics at times over it and it's good to know you are not alone and get some reassurance and calming words.
Thank you. X
Bear I find it hard to get my head around the Gilbert's. You sent me some helpful information. It's called Gilbert's disease but it's not seen as an illness in itself. My doc sees it more as a genetic blood anomilly. I believe it's been long thought it has no symptoms but many who have it will tell you otherwise.as does this information I found
http://www.gilbertssyndrome.com/
As I said struggle to get my head round it a bit 😄 memo brain.
Xxxxx
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Ah thanks for explaining Tc. Let's hope you haven't got that (ovarian remnant syndrome) and that it is just due to surgical menopause (leading to difficulties getting oestrogen levels up) - and maybe the progesterone in addition to the oestrogen (causing the low FSH). I hope you are making a list of qeistions and problems you have for your appointment and hope they give you a decent length of time - do you know how long and whether you will see an actual menopause gynae there rather than a nurse, given that you are a special case?
Hurdity x
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Hi Tc,
Apologies for the extremely long post. Yesterday I took the liberty to read your initial posts to get a better picture of your situation. I'm so sorry you've been struggling for a whole year after your oophorectomy.
These are just random thoughts, but maybe one of them can shed a light on your ongoing issues.
FSH has a very complex and yet to be fully understood molecular regulation. Have a quick look at this article, it's very techy, but it's good to give you the general idea.
https://jme.bioscientifica.com/view/journals/jme/60/3/JME-17-0308.xml
Regarding Gilbert's Syndrome (I prefer that term), considering it a ‘benign' condition doesn't really help. Not that it's a ‘malignant' condition. It's a genetic variation and it should be taken into consideration and be properly investigated. This link shows how common it is and yet it's generally disregarded by patients and medical staff. It might not cause any trouble UNTIL another condition comes into play.
https://rachelarthur.com.au/a-hat-trick-week-for-gilberts-syndrome-guys-and-gals/
Gilbert's importance regarding drug metabolism.
https://www.gpnotebook.co.uk/simplepage.cfm?ID=-1596981241
‘Although Gilbert's syndrome does not lead to progressive liver damage it has attracted attention regarding the pharmacogenetics of drug metabolism.
Apart from being the only physiological UGT capable of bilirubin glucuronidation, UGT1A1 also catalyzes the glucuronidation of 2-hydroxy-estrone and estradiol, and a number of therapeutic drugs such as ethinylestradiol, gemfibrozil, metabolites of irinotecan, simvastatin and buprenorphine'
You have mentioned an eating disorder on one of your previous posts. I don't know if you really had/have an eating disorder, but this article's description of endocrine manifestations of eating disorders is strikingly similar to your current blood tests results and symptoms.
https://academic.oup.com/jcem/article/96/2/333/2709494
Endocrine Manifestations of Eating Disorders
The important bits:
'Anorexia Nervosa
The gonadal axis
The primary changes in this axis are described under hormonal changes. Secretion of androgens including in particular testosterone is deficient in this syndrome, suggesting that gonadal sources are compromised. Although smaller longitudinal studies suggest compromise with improvement in recovery, adrenal precursors appear to be normal in large cross-sectional studies. Low estradiol levels are also seen in anorexia due to a lack of ovarian stimulation. However, estrogen metabolism is also altered. Estradiol, which normally undergoes 16α-hydroxylation, is channeled to 2-hydroxylation and the formation of a catechol estrogen (2-hydroxyestrone) in the undernourished state. This compound has no intrinsic biological activity and acts as an antiestrogen. Thus, the very low estrogen levels seen in anorexia are compounded by an endogenously produced antiestrogen. The lack of adipose tissue may also contribute to the hypoestrogenic state by limiting the extraovarian sources of estrogen because fat converts androstenedione to estrone and testosterone to estradiol.
Bone
Considerable confusion in the pathogenesis of bone loss in anorexia nervosa has led to the widespread belief that estrogen replacement will prevent bone loss. Multiple randomized studies have shown, however, that neither estrogen replacement nor oral contraceptive therapy is effective and, in fact, bone loss and fractures may continue in treated women.
These observations would suggest that estrogen deficiency alone cannot explain the skeletal findings in anorexia nervosa. In the pure hypoestrogenic model, both formation and resorption of bone increase. In contrast, anorexia has been associated with an uncoupling of markers of bone turnover and with a suppression of bone formation that reverses with refeeding. This appears to be the dominant mechanism. Bone resorption on the other hand is increased and does not normalize until menses return, associated with endogenous estrogen secretion. However, it is possible that the restoration of menses is associated with improvement in the secretion of other important neuropeptides that may positively affect bone mass.
Androgens, which also have an anabolic effect on bone, are also known to be depressed in anorexia nervosa. However, a 1-yr randomized study of oral dehydroepiandrosterone did not demonstrate significant effect of treatment. A 3-wk study with testosterone administration also did not have consistent effects on bone, but mood was improved .
This link is old but it shows how liver issues can affect oestrogen and FSH blood levels.
https://aasldpubs.onlinelibrary.wiley.com/doi/pdf/10.1002/lt.20160
Increase in oestrogen and FSH after liver transplant:
‘In addition, FSH increased after OLT (orthopedic liver transplantation) in both postmenopausal and premenopausal women, suggesting central suppression of the hypothalamic–pituitary function in female patients with advanced liver disease, a mechanism for which there is also some evidence in male patients with chronic liver disease.'
According to this NHS presentation, a prolactin test is recommended
https://heeoe.hee.nhs.uk/sites/default/files/clark_anna_womens_health_02.03.2017.pdf
Gilbert's is such an interesting condition, it has been associated with protection against some diseases.
http://www.medsci.org/v16p0135.pdf
Maybe you need lower oestrogen doses, it may seem counterintuitive, but hormone regulation is extremely fine-tuned. This article is about transgender, but I have decided to post it because while looking for ‘low FSH and low oestrogen' on the internet, I was astonished by the number of transgender forums and articles hits.
http://www.scielo.br/scielo.php'script=sci_arttext&pid=S1807-59322018000100221
Finally, I congratulate you for reading this post ;D
BeaR.
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Hiya ladies.
Something strange has happened.
Latest blood tests showed my E had fallen yet again. 2x100 patches for months and it's got lower with every test. It's now 140pmol
Xxxx ???
Hi TC,
Sorry to hear you're still struggling - it's so exhausting isn't it. We were talking in a thread a few months ago about our high SHBG levels. And I was also struggling to keep my oestro levels high enough on 6 pumps of gel per day. I can't remember your history and around what you have tried. But wanted to share with you my recent change of oestro in case that helps. I switched to Zumenon tablets. I was worried because of the info I read on here about how it supresses your thyroid and mine was already low and outside of normal ranges. But when I got my first set of bloods in yesterday my thyroid has actually come back in normal for the first time in 18 months - so I don't have any amazing conclusions from that other than, I guess we all react differently and don't always follow 'the rules'. A whole lot of other things such as my digestion have also improved.
I now have the opposite oestro problem as level was 925, but at the moment feel I would rather have that problem. I had also tried patches unsucessfully and felt really scared to move away from the gel as I know it is the 'gold standard' etc etc, but am tentatively hopeful that I might have found a solution that's better for my body........if I can just stabilise those oestro levels :)
I will have to check the SHGB and remember how to work it out, because there is the unknown of the liver of course. But my SHBG was high on the gel anyway, so there is always the possibility that I might have had that issue without any HRT.
Anyway, send you good wishes and hoping things get better for you soon. xxx
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Thanks ladies.
Hurdity I dont know how long my appointment will be but I'm going armed with a very big list!! I hope I will see a gynae. I believe this clinic is used to seeing hard cases like mine. Fingers crossed. Thank you for your good wishes. Let's hope i finally get some answers. Xx
Bear. Thank you so much for taking the time to put all this together for me. Very much appreciated.
The Gilbert's is interesting. The mentions of the reduced ability to clear toxins from the system. The increased speed of absorption of certain drugs. Maybe points to the speed and severity with which I respond to the 200 utrogestan. And might explain the fact that when using 100mg of it conti I feel as though it builds up in my system .
From reading about Gilbert's I cant help but feel it may be playing a part in my seemingly unusual processing of exogenous hormones I will be sure to tell the doc that I have it.
I dont have active ED at moment. But there have been several times periods have stopped because of it. The last time being for 2 years when I was about 46 so I can see how I might need a dexa scan I will ask about that also.
Thanks for all the info. Realy helpful.xx
Woodpecker thank you for sharing your experience. Great news that your thyroid has stabilised. And that you're seeing improvements in other areas. :)
I havent ruled out oral . But I need to get my weight down first and quit the cigs I feel as. It puts my risk too high. Plus there is the liver pass issue too, given my Gilbert's and my bad reaction to the oral P. I will also ask questions about this at my appt
I was recently reading about zumenon being used "bucally" (dissolved inside cheek) . it seems some ladies In the States are using it that way with their docs knowledge. I didnt look into it fully. But I get the feeling it may be a bit controversial. Does anyone know anything about it by any chance?
Thanks and best wishes to you all. Xxx
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Good luck with your appointment this week Tc. Hope they can sort out a solution for you.
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Thank you Jenny. X
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TC - I've used elleste solo buccal. You need a much smaller dose than oral, half or even quarter an oral dose. I got real peaks and slumps with it so gave up but some ladies get on well with it. Gum and cheek was better than under tongue for me. Surmeno blog has a lot of troubleshooting info on it. Good luck.
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Thanks cupid. Yes the suremeno blog has some great troubleshooting pages for all the delivery methods.
I went through the patch checklist to make sure I could rule everything out in terms of the way I was using it. Re absorption.
Thanks for sharing how you found the buccal method.
Xxx
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TC - have you tried fem7 oestrogen patches? I find them the best out of all brands and far superior to gel for me. They're not as commonly prescribed so you may not have been offered them.
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Cupid. Femseven were the first ones I was given a few weeks after surgery. . I was given sequi which I now know is not the norm post meno but the main issue was I was given 50 which patently werent high enough but couldnt increase as they went out of manufacture right at that time and I was switched to gel.
So I still feel I cant say for definite they didnt work for me as I didnt get to use an appropriate dose. One thing I would say though is I didnt get migraine on the progesterone part it's the same as the contraceptive pill which I took when young with no problems.
I thought they were still out of manufacture. Have you been able to get some. ?
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TC - I've tried almost all available prog and levo seems to be the least troublesome and, like you, I had it in a bcp I got on with. The fem7 gives the best delivery for me out of all the patches and I don't absorb gel well at all. I've got enough fem7 sequi to last until early 2020 so may have to get levo mini pill or possibly even Jaydess if the new formula fem7 isn't available until later in the year. You could try just the fem7 E patch at double dose just to see if you absorb from it though?
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Thanks cupid.
I believe c and w offer the jaydess.
If I cant get the implant I will try to go back on femseven. I've read that a conti regime is better migraine wise. But with the implant it's either the mirena, jaydess or tablet.
Only 2 more sleeps til my appointment I'm pinning so much on it, maybe too much. hope I dont end up sobbing my way back to Fulham Broadway station. !!
Ladies My doc has surpassed herself today. . I only saw her last week but she has called me in again and when I phoned and asked her why I was told it's about progesterone because the blood result "suggests annovulation". No shit sherlock!!!
if I was ovulating with no ovaries I'd be on the sofa with Philip and Holly tommorow morning. :- :)
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You're going to arguably the best meno clinic and consultants in the land. I'd be excited too. An implant and Jaydess would be my holy grail, no mess, no remembering, just hormones without faff. Try for it and let us know.
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Thanks cupid.
I believe c and w offer the jaydess.
If I cant get the implant I will try to go back on femseven. I've read that a conti regime is better migraine wise. But with the implant it's either the mirena, jaydess or tablet.
Only 2 more sleeps til my appointment I'm pinning so much on it, maybe too much. hope I dont end up sobbing my way back to Fulham Broadway station. !!
Ladies My doc has surpassed herself today. . I only saw her last week but she has called me in again and when I phoned and asked her why I was told it's about progesterone because the blood result "suggests annovulation". No shit sherlock!!!
if I was ovulating with no ovaries I'd be on the sofa with Philip and Holly tommorow morning. :- :)
;D - you wouldn't believe it would you!!! This is just so scary. Many of us on here know a lot more than some of these docs! This is why you need a menopause clinic (well - we all do!).
Great that your appointment is almost here at last. I really hope all goes well and more importantly that you see one of the doctors - fingers crossed. We're all rooting for you and look forward (with bated breath) to hear about the outcome. Remember to refine that list, and especially re the questions you have about why things haven't been working for you eg re your oestrogen level and absorption. Then you can refer to it calmly. Sleep well :)
Hurdity xx
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Thank you so much cupid and hurdity for your reassurance and good wishes It means a lot. .I I will be sure to let you know.
The annovulation has surpassed the doc who said you're not post meno until 12 months after ovary removal!!!
Hope you all have a good nights sleep too. Xxxx
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:rofl: (you have to - otherwise you would :'( !!!
Hurdity x
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Just wanted to let you know I have my fingers crossed for you too! X
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Thanks Alice xxx
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Tc - how are you?
Hope your appointment went well.
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Hiya ladies.
So, my appointment with c and w. ...this might be a loooong post!! Much to report so Are you sitting comfortably?
I Saw a doc who has worked in the Panay clinic for 7 years. She was lovely and spent an hour with me.
She is making an appt for the implant clinic. As I am a good candidate for it. Yay!!!
But progesterone is an issue.
She is realy unhappy with me taking any oral HRT whatsoever. I'm overweight and have smoking history but the main issue by far is migraine. She said migraine increases the risk of clot/ stroke on oral HRT. She wants me off utrogestan as aside from risk it makes me feel unwell and is not likely to improve after all this time so not a long term solution. And a long term solution is required with the implant.
The implant stays active for 6 to 8 months but E levels can remain raised even after that and it cannot be removed. It can be unpredictable in that it can give high levels especially in the first few months and as there is no quick fix in lowering E levels with it in situ , then protecting the womb adequately is paramount. She said we dont want lining getting much thicker than current 4.2.
So having the mirena fitted is a bit of a condition for the implant for me. . It made sense and I want the implant so I agreed.
She did an osteoporosis risk assessment and due to my previous eating disorders, family history and oopherectomy I came out high risk. So shes ordered a dexa scan. It will determine whether I get the lower or higher dose implant
The mirena has to be fitted first and it has to be done in their clinic so In order to give time for this and scan (which also has to be done there) she is looking at February implant fitting. She did mention the implant has been hit by shortages. Eeeek!!! But she said they are hopefull will be sorted by then. Let's hope so, not just for implant but for all of us.
Regarding absorption. She said my E levels might be even lower without HRT possibly zero!!! So it's not that I've absorbed nothing. I've just absorbed very little. So in the interim , whilst waiting for implant she suggested no harm in trying something different.
Interestingly, she said they find poor absorbers often fare better on Everol than other patches.
We looked at my levels historically and it seemed that although levels didnt increase on eastrogel, they fell but didnt fall as much or as rapidly as on patches so she suggested Sandrena gel. She reckons its stronger than eastrogel. She's given me High dose 2 sachets but shes writing GP to say I can increase even further if I need to and shes sending doc chart of all HRT products and dose levels so that the doc understands I need high dose if I have to be changed to anything else in next four months.
Utrogestan continual (conti IS better for migraine) so 100mg but she stressed I must take it vaginally. But hopefully wont be long til I get mirena fitted and can ditch it.
Testosterone. Shes given me enough testogel to last me 6 months and said it's fine that I get through a sachet a week as my levels are well within range. And could stand to be a bit higher. We will discuss T implant at implant clinic. As with all T for women it's off license.
She couldnt readily explain the FSH but is writing to my doc for more blood tests. She did say that post BSO the endocrine system can go a bit haywire and may take even longer than a year to settle.
She said Gilbert's disease is unlikely to affect absorption of HRT but that the symptoms of Gilbert's itself can increase post meno. I didnt know that.
Since i recently found out some of the Gilbert's symptoms are digestive issues, fatigue and poor clearance of toxins, including those in some drugs, then I guess it might have come into play. Hard to tell as some of the Gilbert's symptoms are also post meno symptoms. But the poor clearance of drugs and toxins is unique to Gilbert's so I am thinking could possibly have thrown another spanner in the works.
She is also writing to GP to say they need to prescribe enough topical E for me to use as often as I feel necessary for VA symptom control. Even if that's every night.! Couldnt help feeling a sense of victory in that. Felt like all of you were behind me punching the air and going "Yes!!!"
All in all. A very good appt. She hugged me on way out and said "we will have you feeling a lot better".
For some reason I couldnt stop crying when I came out. Proper showed myself up on the district line :) snotty mess!! so many emotions just hit me.
Thank you all for your good wishes. Please feel free to ask me any questions. The doc said my case is more complicated than some but that is what they deal in at the panay clinic So I'm hoping my experience might help other ladies too.
Much love TC xxxx
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Tc, that sounds like an excellent appointment! And I'm not surprised you cried afterwards, you've been through so much!
Fingers crossed everything works out for you. :)
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Aww wow TC sounds like a good plan...
Just to say, I loved that sandrena gel, when I was on it...it is strong stuff. Hopefully you'll be great on it...
She was really thorough weren't she, and a hug afterwards too,😆 I'm praying this works out for you...you deserve some happier times, and I'm hoping this is the way to go for you..
Just a bit of a bugger you've to wait til February, but, at least your booked in.
Hope the dexa scan goes well too, let us know...
Good luck with it all TC , and here's a 👊🏻 Punch in-the air for you....😉 xx
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Fantastic news TC. Now, why aren't all meno docs like that???
You must be so relieved that someone ‘gets' you and what you've endured. The only way is up!!!
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I'm over the moon to read this TC, it sounds like she really listened to you and looked at the whole picture. Brilliant news 💐x
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Oh that's such good news Tc, makes one feel all pink inside just reading about it! So very pleased for you, that you are now in such good hands.
Much love,
JP xx
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Thanks ladies. Realised today I've been on forum a year now. Dont know what I'd have done without you all.
:foryou:
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Forgot to add. In case it helps anyone else.
Although my gp and nurse at c and w told me on the phone I didnt need blood tests as these would be done at appt. I didnt listen. I cheekily went to GP and told a fib. Said c and w had phoned and they needed them. So took them with me Also got last 2 scan copies.
The doc said the fact i was well prepared had saved time. As c and w is not in my own health trust they dont have access to records. Plus my previous bloods would have been out of date so wouldve had to be done again.and possibly so would scan. So she had a good picture to start from and it helped moving things along.
Xxxx
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Well done! A little fib in a good cause :D
JP x
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Good news TC . Glad it went well. X
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Fabulous news Tc! So glad to hear that you are finally on the right path. Xx
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Hi Tc
SO pleased to hear your appointment at the C and W went well, you had plenty of time there with an experienced medic, were listened to and have a plan of action!!!
You must be feeling so positive about knowing you are in good hands and able to try out new regimes. Please please don't be disheartened if you have some disappointment and side effects along the way and concnetrate on the fact that you are going to feel better and better overall!!!
Yes Sandrena is more concentrated than Oestrogel - which means you get more estradiol for a given blob of gel so less to spread out. I used it for a while - it's a bit sticky but as long as you rub it in well and do somethong else while it's drying before dressing - then you should be fine!
All the best and of course keep us updated!
Hurdity xx
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Thank you ladies. Thanks for all your support.
My supply of estradot ran out today so I am starting the sandrena hurdity. I've got an estradot script which I couldnt get filled at the time but might be able to now if I feel worse on the sandrena. But doc said she doesnt want me messing around too much. To stay on gel until next blood test. Thanks for the tips. Xxxx
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So pleased your appointment well, Tc, and you now have a plan going forward which is very positive.
Please do keep us updated on how things progress.
Rosie63xx
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Thanks rosie. Iwill do. Xxx
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Thank you ladies. Thanks for all your support.
My supply of estradot ran out today so I am starting the sandrena hurdity. I've got an estradot script which I couldnt get filled at the time but might be able to now if I feel worse on the sandrena. But doc said she doesnt want me messing around too much. To stay on gel until next blood test. Thanks for the tips. Xxxx
Hi Tc,
Are you feeling better? I hope you can get hold of Estradot, because AAH is out of stock of Sandrena as well. It's a bloody nightmare.
BeaR.
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Good luck with the Sandrena Tc - hopefully there will still be plenty left somewhere in the supply chain to keep us going for a while... do let us know!
Hurdity x
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I'm o.k thanks BeaR I'm always better when on eastrogen only. I've .got to start conti utro tonight.
C and w only gave me 56 sachets so at 2 a day not going to get me far. I checked estradot a week or so ago and pharmasist said still "red". I will have a ring round tommorow.
Thanks hurdity. She wanted to give me more but that's all the c and w pharmacy had How are you getting on with your patch change? Xx
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All good so far thanks Tc - fingers crossed it stays that way. It's ridiculous all this ringing round but hopefully it's only temporary... also hopefully there won't be too much of a run on Sandrena 1 mg with oestrogel still being readily available according to the BMS September info... on the Orion info at the end it said: "If difficulty obtaining supplies, the company has suggested contacting their customer care on 01635520300 to guide them to the wholesale suppliers." so that's one avenue to explore re Sandrena at least?
Oh and good luck with the utro! I'm on day 3 of my course at the mo' (but only 100 mg vag right now...).
Hurdity x
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Good to hear you're doing o.k on the eastraderm hurdity.
Thanks for that number. Its handy to know that.
Hope you get away without any migraines on the utro this time.
And yes, what a wonderful way to spend a day, phoning round pharmasists!!!!!!
Much love xxx
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Hi Tc,
Good to hear from you, fingers crossed you'll be OK on Utrogestan. :-*
BeaR.
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Thanks BeaR xx
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Just wanted to add something which came out of the appt. In case anyone is following my story because they have similar issues. I want to give the whole picture.and forgot something. Important and maybe interesting.
Testosterone ...I had thought I wasnt absorbing it (no benefits whatsoever after 6 months) but doc said it could well be contributing to my meagre E levels. So whilst I'm not getting much estradiol from the patch the testogel may be converting., possiblyeven responsible for the lions share. My FAI numbers bear this out as not much T available. I know this conversion thing in the precense of low E will not be news to any of you ladies but....
Heres the thing. She doesnt see this as a problem at the moment and certainly not a reason for holding off on T until E levels rise. Quite the opposite
It's not the ideal situation obviously as I'm not getting any help for low T symptoms due to conversion but , the fact that I absorb so little transdermal E means any E I'm getting from conversion is not a bad thing in my current situation.and stopping could potentially cause E to drop further
It's a different take on the "only using T once E is replete" theory.. it seems T may be benefiting me after all just not in the way it's intended.
I should also add that having had BSO there is less likelihood of becoming overly testotrogonised. Although it could still happen. Miirena has potential to raise T and if E levels rise from implant some T from testogel should be free'd up. So great for hopefully finally seeing some benefits from T but a bit unpredictable in terms of how much and how quickly available T may rise so I will need to be closely monitored with bloods and dose adjusted accordingly to ensure it doesnt go too high..
Xxxxx
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Thanks for that interesting update Tc. I was a C&W patient too and nobody was bothered about my oestrogen level when I was prescribed T. I think we knew it was still low.
JP x
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Thanks for reporting on this Tc - it's an interesting question which has been raised before. I know that theoretically this should be possible - after all testosterone is one precursor of estradiol to which it is converted via the enzyme aromoatse, in certain tissues. The question is - does it?
The last time I looked up the only study I could find where a lot of these things were measured - is the product information for the previously licesned "Intrinsa" patches. I can't remember all the details except one important one that estradiol and i think estrone levels were unchanged after ( can't remember the time period) Intrinsa application - maybe 3 months maybe a year - soz forget! The trials were done in women on HRt and they compared transdermal and oral - which itself comprised estradiol or equine oestrogens. It is all very complex and invloves all sorts of interconversions as well as SHBG which plays a role. For example testosterone binds to SHBG with higher affinity than estradiol so if you add testosterone then theoretically it could displace some estradiol bound to SHBG into the bloodstream so it becomes bio-available? Maybe? Therefore levels could be increased without T being converted to E. However I don';t think the trials were done on women with low oestrogen - but already taking HRT and can't remember the doses. Just about to sign off so won't look up now but it is an interesting area - yet again more research is needed.
Thanks for sharing Tc and just adding a few rambling thoughts of my own :)
Hurdity x
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Thanks joaniepat .
Hurdity. The higher T binding may lead to less available E., I've read that too. It would seem whilst conversion of T to E is an issue, , there is a potential opposing effect too as you describe. It realy does seem like there are differing views on this doesnt it?
From myself and joaniepat experience c and w would appear to fall on the side of E levels not being an indicator in prescribing T.
With my results it is clear that not all the T I'm taking is available. It's going somewhere else, in my laywoman's terms, but then my low E on high dose patch is a puzzle not yet solved. Is it simply non absorption or is something else happening to within my body to make it unavailable.
In some senses we are all Guinea pigs when it comes to T, replacement I feel. possibly it's not been in clinical use for long enough . To gain a clear enough picture, certainly of long term effects
Thank you for your thoughts. Xxxx
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afternoon ladies
need some advice
currently using estrogel 3 pumps and ovestin x2 week
i started hrt for dampness down below and went through a period of where i thought it was improving but last few weeks and i think since increasing to 3 pumps of gel the dampness is back in my knickers the minute i sit down my knickers are wet i don't think it's wee as smells sweet but is getting worse i also have developed increased sweating in groin and around my vulva is really wet moist . when i lay down and straight my legs it feels like i'm going to leak wee so i don't relax and have to keep my knees bent . i wasn't aware but my mri scan showed a batholomew cyst ! could this be the cause , there is no significant prolapse whatever that means but it feels not right ?
my other question is due to raise in estrogen could this be causing more fluids to produce ? i'm sick of wet underwear and to be honest everything feels lower down
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Sammie. I think you mean bartholins cyst. Here is some info
https://www.nhs.uk/conditions/bartholins-cyst/
You may be producing some more lubrication but if you've been checked for infection and it's clear and you feel like you're weeing yourself it could be a bladder issue. Maybe see doc again xxx
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Hey TC - I have been off the forum for quite a while just popping in but not reading as much. I missed all your stuff about the C&W appointment and have only just read so some belated :spin: :jiggy: :cancan: celebrations from me! Wow, someone who listens...can we all go or can she train everyone else??
I really hope things start to come right but at least you can go and ask questions as you go along and I'm really pleased to hear that she has written everything down so your GP keeps on the straight and narrow as well. I am still ok, doing my own thing (long cycle yahda... yahda!) but its been a complete year and no one has checked on me at all, so I asked my GP about bloods, a scan and why I hadn't had a follow up from my one appointment at the Meno clinic. I have written on a another post that a letter came back saying "as I was ok, then they didn't need to see me or test anything"! I now as I put it "officially have it in writing that I am not entitled to see anyone about anything, and nor do they care"!
I despair.....my fingers and toes and just about everything else is crossed for you. Let us know how you are getting on though!
much love xx
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Hiya lady. Good to hear from you. Thank you.
Saying they dont need to see you.. I thought anyone on HRT was supposed to be monitored yearly. It says that in the NICE guidelines. Ignore that letter lady. If you want a review then ask for one. After a year I dont think it's too much to ask. What a bloody cheek . >:(
Thanks for crossing everything for me. Much love x❤
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I did ask for one Tc, I asked my GP, the GP thought there should have been one and wrote to the meno clinc and that's what they wrote back! >:( - so what to do now?
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Soz. I thought you meant the gp had sent it. Sounds,like the meno clinic are thinking gp can do it. Is there another meno clinic in your area GP could refer you to?
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Well they know fine rightly that the GP can't do a scan of my womb and the GP asked for that in her letter? No they were adamant that they didn't need to test anything, scan anything or see me in the letter because, "I wasn't having any issues".
and no there is only one Meno clinic in the whole of NI :(
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Oh crikey. So sorry lady. Maybe it's different there but my scan was ordered by my GP. I thought maybe they were passing the buck back to gp but if the gp cant order a scan then that's blinking ridiculous of the meno clinicaaarggghh!!!
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aaarrrgh! is about right. I suppose I either wait till I have issues, or pay privately but the thing that is going to really stick in the craw is that the meno consultant that I will see privately is the one at the meno clinic - we only have one! or just try and forget about the whole thing! I mean why should I think I need checking??? ::)
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Wow. Bad Breast pain. I went to bed early and have had to get up and take painkillers. 3 days on sandrena. My breasts look huge and feel lumpy worse on left side than right as it was when I upped patch from 200 to 250. It went away at that time when I lowered back to 200.
But this pain is worse left side going under armpit so I cant put my arm by my side. I can now feel with my fingers the cysts I had there in my early 40s which were not removed at the time as they were deemed to be hormonal after scan. But those cysts are painfull as heck right now. Oh dear. Not going to get comfortable tonight and only day 3 on the gel. I hope its temporary.
X
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Hi TC
Sorry to hear you were feeling so rough last night, I hope you eventually managed to get some sleep? Hopefully the pain and lumpiness will settle down. I had the same thing when I upped my oestrogel, so much so, that my meno Dr sent me for a breast scan, convinced I had cysts, but it was just healthy breast tissue! It did settle down eventually, without me lowering back down (I think without that scan I would have gone back down out of fear!).
Jeepers xx
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Thanks jeeps. I feel realy pre menstrual. Must be the change over fo gel. Reassuring to hear you didnt have to Lower and it went away.
Much love xxxx
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Hi Tc,
So sorry to hear you're having bad side effects. I guess you have tried all HRT range by now? So unfair. I hate bras but I had to wear them non stop when I had breast and armpit pain during perimenopause, it helped a bit. Borage seed oil has helped as well. I hope the pain will go as your body adjusts to the gel.
BeaR.
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Thanks BearR. The pain has eased quite a bit in the last couple days. Given that I had painful breast cysts which the breast clinic said were hormonal. I dont suppose it's a surprise that a change in HRT could cause it to flare. On the plus side I certainly havent felt any sort of dip on the sandrena.as yet which is good considering I went from 2 x 100 patches.
Thanks for the tip about the borage seed oil. I will check it out.
Xxxxx
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Sorry to hear about the breast pain Tc - I get this often on the prog part of my cycle ( although not so much now I have reduced to 100 mg for a trial period ::) ). I have lumpy breasts too and have had milk lumps and mastitis ( when breast-feeding) and also a fibroAdenoma. However could this be a good sign actually (the sore boobs)- meaning that finally you are absorbing more oestrogen?
I do hope so - and especially now the pain has eased!
There is some information about starflower oil ( which is what borage see oil is) and evening primrose oil (EPO) - and breast pain here:
https://www.ruh.nhs.uk/patients/services/breast_unit/common_problems/mastalgia.asp?menu_id=12
It (EPO) used to be prescribed on NHS for breast pain (and I was given this too many years ago) but then NHS removed authorisation due to lack of clinical evidence proving efficacy. Nevertheless as it says on here: "Clinical studies have failed to prove its effectiveness conclusively and some experts feel that it is no more effective than a placebo. However, it is a harmless and well tolerated drug and has few side effects so that it is a quite reasonable step to take in the first instance to see if benefit can be achieved." so if the pain persists there is no harm in giving it a try. Good luck! :)
Hurdity x
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TC - I found Sandrena more potent than oestrogel and patches. Hopefully this will work in your favour and the breast pain will ease when you settle into the new regime.
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Thanks kiltedcupid.
Thanks for the tips and for the link hurdity. I'm going to look into it.
Have you gone to 100 utrogestan whilst still on the cycle? I know you were having some problems with it. Hope you find it works better for you.
I started the utro 100 vaginally 3 nights ago. I've already had a migraine and my mood has taken a dip. I'm going to be on it conti now. So I'm hoping the migraines will settle as they did last time on conti.
I still havent got a date for mirena fitting. It's in my wardrobe!! They gave it to me at my appt . It mustve shown on my face when I saw the size of the box. The pharmasist said "dont panic, it's not that big" :)
They insisted its fitted at C and W. so my mirena will have done a full circuit of the district line by the time its fitted.
Xxxx
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I'm a bit confused... doesnt take much though. You mentioned 100 utrogestan on a cycle? Is that approved now?
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Only with supervision really KitedCupid. Regular scans required. Some consultants will recommend if women are having problems.
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I was on 200mg when on a cycle. I'm on 100 conti now.
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Thank you Ladybt28, that was my understanding. Perhaps there needs to be a change in the details as listed on the treatments section of the forum in order that ladies are fully informed and can consult their docs accordingly, particularly if they're struggling with Utro.
TC - thank-you too.
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Thanks kiltedcupid.
Thanks for the tips and for the link hurdity. I'm going to look into it.
Have you gone to 100 utrogestan whilst still on the cycle? I know you were having some problems with it. Hope you find it works better for you.
I started the utro 100 vaginally 3 nights ago. I've already had a migraine and my mood has taken a dip. I'm going to be on it conti now. So I'm hoping the migraines will settle as they did last time on conti.
I still havent got a date for mirena fitting. It's in my wardrobe!! They gave it to me at my appt . It mustve shown on my face when I saw the size of the box. The pharmasist said "dont panic, it's not that big" :)
They insisted its fitted at C and W. so my mirena will have done a full circuit of the district line by the time its fitted.
Xxxx
Thanks Tc yes I have. I had shortened my cycle to 5-ish weeks so only a bit longer than the normal 4 week one - so figured that 12 days vag at 100 mg might be plenty. I have recently had a scan after all my varied cycles ( before changing to 100 mg) due to occasional spotting before time - but it was very low approx 4.7 mm so I figured reducing the prog would probably be fine if I shortened my cycle. My GP is very good in referring me for scan if ever I get spotting., and I have had a couple of private ones through Ultrasound direct. She pretty much gives me free rein to do what I like within reason as she knows I know my body (over years of experimentation and results from scans).
How are you feeling on the conti utro now? Hopefully no migrainea?
I can definitely say I don't feel as bad on it (100 mg) as with 200 mg - well not this cycle anyway. The foggy head just wasn't so intense. I had a day of headache on the 12th day which I thought was going to be a migraine but took a Sumatriptan and it didn't come back. However I have never taken it longer than 12 days so no idea how I would feel after this point.
Thank you Ladybt28, that was my understanding. Perhaps there needs to be a change in the details as listed on the treatments section of the forum in order that ladies are fully informed and can consult their docs accordingly, particularly if they're struggling with Utro.
TC - thank-you too.
No change in details are needed because there has been no change in UK licensing for utrogestan and this is what is put into the treatments section. I don't think MM recommends off-licence treatments. Often there are enquiries about vag utro on here so that's where women get their info from - posts on here and other forums referring either to their gynaes' recommendations or the studies which investigate efficacy of some of these off-licence regimes.
Hurdity x
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So it's do as I say, not as I do if you can't afford a private gynae/consultant/scans or don't have an enlightened gp?
Seems unfair and terribly undemocratic.
My point was that on the treatments section a note could be added to explain that off licence use can be discussed with your gp if you find the licensed dose onerous. Not all women read all posts.
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So it's do as I say, not as I do if you can't afford a private gynae/consultant/scans or don't have an enlightened gp?
Seems unfair and terribly undemocratic.
My point was that on the treatments section a note could be added to explain that off licence use can be discussed with your gp if you find the licensed dose onerous. Not all women read all posts.
I don't really understand what you're saying kilted cupid? Do as who says? I was just reporting what I understand happens on here having been a member for nearly 10 years. It is run by an NHS gynaecologist. I presume this is why off-lceince regimes are not usually recommended because these need supervision which NHS GPs may not be able to provide. Websites run by private GPs may well say different things and advise off-licence regimes. That's not to say that this site can't provide such info. Why don't you write to Emma and suggest it and she could pass on to Dr Currie. Of course more info should be available but I'm not sure it would be provided on this site - but worth a try definitely! We might be surprised. That is the great value of this forum so that we can educate ourselves and each other and be empowered to go to our GPs and challenge them if necessary. Unfortunately we can't make GPs prescribe off-licence regimes although with Utrogestan for example since it's the same product, if it is used vaginally rather than orally – how would they know?
What's undemocratic and unfair? For me it is unfair that the best possible treatment using the most up to date information, and tailored treatment with regular monitoring and scans - is only available to the few who can afford it (ie private treatment)! if this is what you're saying then I agree and have always said so!!
Tc - apologies for going off tack here but sometimes other posts stimulate a response and go off on a bit of a tangent!
Hurdity x
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Apologies too TC.
I'll respond to hurdily on another thread.
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No worries at all ladies. No apologies needed.conversations take twists and turns and that's fine by me. It's all relevant to HRT. Xxxx
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It's not going well. 2 weeks on sandrena. Depression and anxiety just dropped on my like a big black blanket over last couple of days. I ve been on utro 100mg for 9 days but I dont think it's that. The last couple of months my mood and anxiety was so much better even during the P.
My levels werent good on the patch but maybe that aspect had settled as I felt I was coming out of the woods in that respect. 2 x 100 patch is far more than 2mg sandrena. I'm thinking it's a drop in E which in could I'll afford as I'm brain foggy, crying, Va is bad hot flushes , dry all over and my energy level is on the floor. I've got that horrible not comfortable in my own body feeling.
Doc said I could increase after 4 to 6 weeks. I know it's a knee jerk reaction but I cant afford for this to set back in. And I'm panicking wanting to increase. I dont know if things might settle if I wait but they havent before. When I felt like this it just got worse and worse. It's happened so suddenly and the drop in mood is severe. I havent been out all weekend and today I was walking round in a daze
I'm scared it will get as bad as it did before xxx