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Author Topic: Not sure which way to turn!  (Read 2582 times)

Mary G

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Re: Not sure which way to turn!
« Reply #15 on: May 25, 2020, 11:59:08 AM »

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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Blue Kingfisher

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Re: Not sure which way to turn!
« Reply #16 on: May 25, 2020, 03:28:05 PM »

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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Blue Kingfisher

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Re: Not sure which way to turn!
« Reply #17 on: May 26, 2020, 08:17:01 PM »

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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Kathleen

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Re: Not sure which way to turn!
« Reply #18 on: May 27, 2020, 09:12:28 AM »

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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Mary G

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Re: Not sure which way to turn!
« Reply #19 on: May 27, 2020, 10:23:14 AM »

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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Blue Kingfisher

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Re: Not sure which way to turn!
« Reply #20 on: May 27, 2020, 10:55:26 AM »

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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Blue Kingfisher

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Re: Not sure which way to turn!
« Reply #21 on: May 28, 2020, 11:48:20 AM »

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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Mary G

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Re: Not sure which way to turn!
« Reply #22 on: May 28, 2020, 05:56:30 PM »

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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Blue Kingfisher

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Re: Not sure which way to turn!
« Reply #23 on: May 29, 2020, 11:07:36 AM »

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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Mary G

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Re: Not sure which way to turn!
« Reply #24 on: May 29, 2020, 07:58:40 PM »

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!
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