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[Blue Kingfisher]

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! 

 

 

[Peri-wrecked]

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.

[Mary G]

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.

[Blue Kingfisher]

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!

[CLKD]

   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.

[Blue Kingfisher]

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 :-)

[Mary G]

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.

[CLKD]

You are not alone!  Trial and Error can be so tiring for many medications, not simply HRT.  Good Luck!

[Blue Kingfisher]

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!

[shrosphirelass]

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.

[Katejo]

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.

[Blue Kingfisher]

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

[Tinacros]

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 😐

[shrosphirelass]

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.

[Blue Kingfisher]

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.