Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Blue Kingfisher on May 17, 2020, 10:05:24 AM
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Hello everyone,
I've come on again for some friendly advice. I feel dreadful because I only ever come on here for help and rarely offer help and support to others because I spend so much time feeling dreadful! I can only apologise but say how deeply grateful I am for the support and advice on here.
I'm 51, been on Oestrogel daily & Utrogestan (200mg taken vaginally) 7 days a month. I have no idea if i'm post menopausal, i've been on this regime for about 4 years, my periods were very irregular before commencing HRT. I have Hashimoto's which is an autoimmune disease which results in thyroid hormone issues.
I don't tolerate hormonal changes very well and after a visit to the Newson Clinic back in Dec, I've finally plucked up the courage to try what the doctor recommended - the Mirena coil with Oestrogel to start with & then perhaps Mirena with Oestrogen patch if that didn't work well. Obviously we are now in lockdown and i'm unable to get a coil fitting but as time goes by my symptoms are getting worse.
The doctor thinks that I might be better on a continuous regime to minimise fluctuations. I don't feel terrible on Utrogestan, I feel terrible from when I stop it right through until about 14 days after the bleed. I wonder if I suffer very badly from progesterone withdrawal and the continually change with the sequi routine plays havoc with my thyroid & I go through a dreadful hormone roller coaster every month.
I've tried being on 100mg Utrogestan (taken vaginally) for a longer period of time & this was a disaster.
As I can't go for a coil fitting (& God help me if it makes me feel even worse!) i'm wondering if there's a combi patch I could/should try in the meantime? Is it Evorel Conti? Does anyone think this is worth a go? Will my local GP likely agree to prescribing it? Can I even get this during lock down?!?
Thanks for any responses in advance - I knew it would be hard with a hormone condition but it has to be better than this or I can't see the point of existence sometimes!
:)
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Hello, I don't have much advice to offer other than to say I understand you when you say you feel dreadful everyday. That has been me for the last 5 years. I am hoping to get HRT tomorrow. A friend of mine has been prescribed the Evra Patch. She hasn't started it yet. Is this the same thing I wonder?
I hope you feel better when you start your new regime. Take care.
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Blue Kingfisher, I'm sorry you are feeling so unwell.
I think the Newson Clinic have the right idea with the continuous combined regime and to be honest, I doubt you will feel worse with a Mirena coil. However, I would strongly urge you to ask for a Jaydess coil because the dose is lower meaning you have a greater chance of tolerating it. Having had two a Mirena coils myself, I can say that I think the progesterone dose is too high at first so a Jaydess coil would be a far better option. Having used both Utrogestan and the Mirena in the past, on reflection, I think Utrogestan symptoms are worse and it took me two weeks to get over the Utrogestan phase.
I don't tolerate hormone fluctuations at all now for various reasons which is why I have switched to a continued combined regime myself. I found the bleeds and the progesterone phase far more difficult to deal with as I got further into menopause.
It's a pity that Femseven conti is out of production because it has the same progesterone as the Mirena and Jaydess coil - you could have had a trial to see how you get on with levonorgestrel and also a continuous combined HRT regime.
It's worth trying Evorel conti to rule it out if nothing else but it does contain norethisterone which is not the easiest progesterone to tolerate. If your GP doesn't play ball you can get it from an online pharmacy.
I hope that helps.
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Hi Peri-wrecked, I'm sorry you are also feeling rubbish day after day. I do have some reasonable patches (about one week a month) but the rest of the time my quality of life is pretty low. it's definitely ?existing? rather than ?living? that's for sure! I do hope you get somewhere soon, I can totally identify with you and have everything crossed that the HRT you try tomorrow leads to better things!
Mary G, thanks so much for your thoughts & advice. Very helpful about the Jaydess coil and the logic makes a lot of sense to me. I can't find the letter the doctor sent me after the consultation (I feel too unwell to search for it!) but I think she mentioned the Kyleena as an option or maybe even the Jaydess. I wonder what her logic was to try me on the Mirena first?.....
I will email the clinic to ask for another copy/email of the letter & see what it says. It might be worth forking out for an online consultation to establish which would be the best one for me to start off with but there goes another couple of hundred pounds no doubt.....all in my quest to live a normal life and hold onto my job by the skin of my teeth! You have to laugh!
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:foryou: nothing is worth feeling so ill for ............. I always worried about medication making me feel worse :'(
Let us know how you get on? It really is worth while paying for an update, after all we can't go far right now and if you feel ill you won't feel like travelling when we are allowed to! Peace of mind and Quality of Life are important.
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Thanks CLKD! :)
I will see what the letter says, as can't remember, then email the clinic on which they think would be the most suitable for me to start with and like you say, I may as well have the consultation soon if there's any doubt. At least I?ll be set for what the plan is as soon as I'm allowed to have the fitting.
Then it will just be a matter of waiting but it might make me feel better just knowing there's a potential solution in the months to come.
Thanks for cheering me up everyone, I feel shockingly bad but quietly smiling to myself now :-)
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Blue Kingfisher, if the clinic have offered you a Kyleena coil then I would grab that opportunity with both hands. The dose is much lower than the Mirena coil and only slightly higher than the Jaydess coil. I really would push hard for this because it really could be the difference between tolerating it or not because the difference in the dose is significant.
I don't think you should pay for another consultation, it's best to stand your ground and say you want to try a lower dose coil, it's fair enough.
Good luck and keep us posted.
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You are not alone! Trial and Error can be so tiring for many medications, not simply HRT. Good Luck!
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Update on coil choice situation......
So I've had a response from the Newson clinic nurse and she states they can only offer the Mirena coil as the Jaydess and Kyleena are unlicensed for HRT. Hmmm....so I've been on 200mg Ultrogestan pessaires for a couple of years and that isn't licensed for HRT either as far as I know.....
I guess I could either push the issue with the Newson clinic (since it was discussed with the doctor) or I wonder if the Studd clinic will offer it. The doctor at the Newson clinic did mention something about unlicensed come to think of it & I think her approach was to try the Mirena first and then think of other coil options if this didn't work out.
Has anyone got any advice I wonder on successful fittings of Jaydess or Kyleena?
I think I will call the Studd clinic next week just to see if they offer it in the meantime & if I don't get anywhere....then I guess it's Mirena or nothing coil wise, at least to start with!
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I have no experience of coils but have recenly changed to a conti regime. I seem to tolerate the progesterone fine but had problems with sequi due to the changing levels, which increased headaches and imsomnia. So far it has been good (2 months) apart from bleeding every couple of weeks (which hopefully settle). I'm on evore conti and I picked up a prescription 10 days ago and they had supplies then.
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I have no experience of coils but have recenly changed to a conti regime. I seem to tolerate the progesterone fine but had problems with sequi due to the changing levels, which increased headaches and imsomnia. So far it has been good (2 months) apart from bleeding every couple of weeks (which hopefully settle). I'm on evore conti and I picked up a prescription 10 days ago and they had supplies then.
I am on Evorel conti patches and haven't had any problems other than the continued bleeding which is now much reduced. No side effect symptoms at all. I was recently offered a Mirena coil but said no because I don't like the idea of having something like that put into me. I would feel that I wasn't in control. If it caused problems, I couldn't remove it.
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That's interesting Katejo and Shropshirelass & thank you for you replies. Mary G also suggested it was worth considering trying Evorel Conti to rule it out if nothing else. I wonder what strength I would need to be on to migrate from 5 pumps Oestrogel daily (I have absorption problems) onto Evorel Conti? I presume the progesterone is set at a low level within each patch......does the progesterone dose increase in higher dose patches of oestrogen I wonder?
Perhaps I should start a new thread to establish what dose I would be on for Evorel Conti, how I would transition etc....
Thanks again, I'm still going to scope my coil options a bit more but I can see the logic you Lovely ladies are suggesting (patch is less invasive than a coil, I can try it in lockdown & it might suit me better although I'm worried I won't tolerate the progesterone!). I guess there's only one way to find out!
x
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Bluekingfisher i have also got an under active thyroid which could explain why I've been feeling so bad. I'm in an quandary at the moment. I first started on femoston 1/10 and felt amazing for a couple of years, but then developed quite bad PMT. I then got put on femoston conti 0.5/2.5. I was ok on that but just felt I needed a little bit more oestrogen. I had my bloods done whilst on that and my orstradiol levels was only 111. I then decided to try oestrogel and utrogestan vaginally every other night. I'm post menopause... well this made me feel horrible 😢 so I'm thinking like u the hormone changes affect me more because of my thyroid! I think as a last resort I?ll go onto femoston Conti again. I've just took a week off them all because I was so sick of feeling rubbish. I wonder if I could go back on the 0.5/2.5 and just add a tiny blob of oestrogel🤔 failing that it'd have to be the 1/5 femoston Conti but I don't know if that progesterone would be too much. it's all so confusing. I hope you find one that suits you. it's all so hard to deal with when we feel so rubbish 😐
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Blue Kingfisher, I think evorel conti is equivalent to 2 pumps of estrogel and there's no way of increasing the levels because of the progesterone. I asked about adding gel to evorel sequi in the past but was told it was not advised because of endometrium build up. It may be that you absorb the patch better than the gel, but that may not be the case.
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Tinacros, 111 oestrogen is low and I know how bad that feels, my levels at one point came back at <19. When they were at level I was extremely ill and couldn't get out of bed. It seems you need to have a certain level of oestrogen to make the thyroid hormone work. I only feel human when my oestrogen levels are at least around the 400 mark but everyone is different. If I were you, I look at going back onto Femoston Conti and adding in some oestrogel. It might not be popular advice on here, I've no idea from a health and safety standpoint, but I do know what it feels like when your body is hardly working due to low oestrogen and low thyroid - it's extremely bad.
Shropshirelass, thank you for the heads up on the oestrogen dose in Evorel Conti, this definitely won't be enough oestrogen compared to what I currently need but like you say, I might absorb it through the patches better. If I don't, & I?ll know because my thyroid will barely work and I?ll struggle to function & get out of bed, then I?ll know I need to top up with oestrogel.
I think I?ll start a new thread on changing over etc as haven't 100% decided whether or not to try Evorel Conti or wait for the coil but coming down on the side of trying the patch with the back up of oestrogel if I need it.
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Blue Kingfisher, perhaps you could ask for the low dose coil off licence and agree to have regular uterine scans. You could offer to take responsibility for it yourself and sign a disclaimer. I would not want to start with the high dose and then have to face getting it removed if it didn't work out. I had a Mirena coil with a 50mcg patch and had over thinning of the womb lining and endless infections. I think the dose is too high for a lot of women.
In the meantime, have you tried to get hold of the Evorel patches?
Tinacros, like Blue Kingfisher said, go for it and just add the gel. That oestrogen level of 111 (pmol I assume) is way too low to do anything meaningful.
I was topping up my Angeliq oral HRT with a 50mcg patch for ages it worked very well as far as womb protection was concerned. The Angeliq ratio was 2mg progesterone and 1 mg oestrogen so no wonder it didn't work and I had to top up the oestrogen. Interestingly, the US brand of Angeliq is 0.5mg progesterone and 1mg oestrogen so it probably works much better because it's not overloaded with progesterone.
My gynaecologist and menopause doctor both agreed, if you take progesterone every day/have a progesterone coil but the dose is too low for the amount of oestrogen you are taking, you will bleed and probably a lot. This will be a sign that your ratios are wrong and obviously you will need to take action. If you don't take progesterone every day, do not have a progesterone coil and you take too much oestrogen then you may get womb lining build up.
The best way around all of this is to have a yearly scan and then you will know exactly how much progesterone you need (or establish how little you can get away with?) and you will not have to keep guessing.
Flexibility is the key to success.
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Hi Mary G, thank you for the excellent advice on taking responsibility for scans to get the Jaydess unlicensed - I will explore this prospect next week. Meanwhile, as were in lockdown, it makes sense to try Evorel Conti but I'm unsure about dosing etc so will start a new thread on this now.
x
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Hi all,
Update on the HR switcharoo situation. My GP has agreed to prescribe Evorel Conti so that will be winging its way to me soon via Pharmacy2u. Very worried about trying it, naturally, but hopefully it won't be worse than Utrogestan because i'll be on some progesterone every day with this regime - I just hope I can function & don't feel dreadful! I asked my GP if he thought it would be OK to top up with Oestrogel as the patch contains the equivalent to 2 pumps & i'm on 5. He didn't see any harm in this but said to be obviously cautious. Does anyone else think this is OK as I know some ladies quite rightly have questioned this on another thread?
I've also sent an email to the Newson Clinic stating my case for the Jaydess or Kyleena coil once were out of lockdown but I'm not sure they will play ball. If this is a dead end, I will try the Studd clinic.
It might be that I get on famously with Evorel Conti but experience has taught me always to have a plan B, & oh C & D........ :-\
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Hello ladies.
I am post meno and came off HRT in July last year and in December I was diagnosed with low thyroid and prescribed Levothyroxine.
I thought that once medication raised your circulating levels of thyroxine your condition should be stable. I understand this is because you have created a reservoir of T4 for the body to use and the fluctuations from a diseased Thyroid gland do not have an impact. It is a bit like HRT replacing the output of failing ovaries.
Due to Lockdown I haven't been able to see my GP so I could be completely wrong! I am due to get some blood test results soon and then I will know if my Thyroid hormones are in the normal range.
Take care ladies
K.
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Well done Kingfisher! Evovel conti contains norethisterone which is a powerful, synthetic progesterone so if you top up with gel and start to get womb lining build up, you will bleed. I imagine that was your GP's thinking too.
Good luck, hope it works out for you but if not, there is still the low dose coil option.
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Thanks Mary G - no go on the Evorel Conti trial as can't get any via Pharmacy2u or my local chemist. I can't help thinking I might have dodged a bullet anyway & i'm focusing my efforts of pushing on different doors to get commitment from someone to fit me with a Jaydess or Kyleena ....I've written to two clinics, waiting to hear back....
Hi Kathleen, if you are feeling good on Levothryoxine then I'd imagine your T4 levels will be in the normal range. Yes, in theory if your T4 levels are in the 'normal' range you will be stable but for many it unfortunately isn't that simple. For example, some people have T3 conversion issues and if you can't make enough T3 then you'll have too much T4 build up and feel pretty awful on Levothyroxine (thyrotoxic). Some unlucky folk can't tolerate synthetic T3 as a top up which leads to all sorts of hurt. BUT! Let's not even go there as this type of detail is probably for a different forum and I'm pleased to hear that you seem to be tolerating Levothyroxine well? You have also managed to be off HRT entirely so if you are feeling well this a great achievement :)
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Hello ladies, update on this situation is that one clinic is refusing to fit either a Jaydess or Kyleena on safety grounds stating it isn't enough endometrial protection. Still awaiting a response from the other clinic.
So if I can't get conti patches due to supply issues & im bickering about which type of coil I could have fitted in an era which I can't get one fitted anyway due to lockdown....that leaves me with the dreaded Utrogestan!
it's accountable for a lot of side effects that take at LEAST 2 weeks to recover from! I'm now contemplating trying to come off HRT entirely as a result! I'm due to start Utrogestan on the 1st June & I REALLY don't want to go near the stuff! I'm toying with the idea of not taking it (I use it vaginally) & easing myself off the oestrogel instead. The problem with that approach is I will be on oestrogen only whilst weaning off HRT. Not sure how quickly or slowly I should do this - I'm on 5 pumps. I might feel shocking off HRT but the withdrawal I get from Utrogestan is definitely shocking so it's a rock and a hard place type situation!
Has anyone got any guidance on how quickly I could try coming off oestrogel? Down by half a pump every week for example? I'd then be on oestrogen only for 12 weeks (including the 2 weeks I've just had on no progesterone). I'm sure this will be a disaster & I?ll be reaching for the oestrogel like water in a desert but it's all I can think of trying at the moment that's within my control!
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Blue Kingfisher, sorry to hear you have drawn a blank re the low dose coil fitting. I am surprised the clinics you contacted are not prepared to let you try it if you take responsibility for it and have regular scans.
Before giving up on HRT completely, is it worth trying the Mirena? You might feel better if you give it a try and (once again) rule it in or out. Chances are you will get on well with it but I would suggest you increase your oestrogen dose to compensate for the progesterone compenent and minimise possible side effects.
I completely understand how you feel about Utrogestan, I can't go anywhere near it now. Have you tried Provera? Quite a few women tolerate it well. How about trying to get the Evorel conti patches from a different pharmacy?
I think it is worth trying everything before deciding HRT is not for you.
It is dreadful that so many women are forced to give up on HRT because of the lack of a decent, tolerable form of progesterone.
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Thank you Mary G & everyone for your ongoing support. Today is a good day as I've called the other clinic & they've agreed to fit either the Kyleena or Jaydess. They aren't sure which one yet due to availability but they know my case well with regards to progesterone intolerance so I think they will go for the Jaydess if they can get it. I've also got an appointment to have it fitted on Tues 9th June which is much sooner than I hoped for! This means I won't be taking the dreaded Utrogestan on 1st June as I think having oestrogen only for an extra 7 days than usual is no doubt fine & will be good to give my body an extra oestrogen buffer before the progesterone starts to seep in.
So, after throwing my toys out of the pram completely yesterday, I'm suddenly delighted & full of anxious hope! Probably a bit too early to pop the champers in the fridge but Prosecco at the very least surely.
Now I only have the pain of the actual fitting to stress about oh & going on the train & tubes to London with Coronavirus still at large & I guess if it doesn't suit me.....Is paranoia a meno symptom? My husband would drive me if I asked but I'm so fiercely independent I'm not sure I?ll ask.
So I feel very lucky today, because I don't have to take Utrogestan but mostly because of this forum and the suggestions & encouragement I never would have found alone. I'm getting a bit Gwyneth Paltrow now so better stop there....perhaps Gwyneth had just discovered she was allowed the Jaydess before her speech....worth a thought 😁
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Blue Kingfisher, that's great news! Not long to wait either. I really hope it works out for you and please let us know how it goes on 9 June.
A new thread on your experience with the low dose coil would be really helpful. There are so many women who are desperate to find workable form of progesterone.
Good luck!