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[Blue Kingfisher]

Hello ladies,

My Kyleena coil was fitted 9th June. Yes, I haven't given it time to settle but when you feel suicidal, I find it helps to have a plan B in your pocket. How long is reasonable to feel terrible? Three months, six? If my current symptoms continue, I'm not sure I could retain my job or marriage whilst feeling like this. When you feel terrible, six months is a big block of time.

Presumably, I could call the clinic where I had it fitted and warn them I may need it removed and see what they say?

If anyone wants to come along with their coil success story I'd also be pleased to hear it.

Blue x

[Nik2502]

Hi Blue

I had one fitted last Thursday and taken out last Saturday. My body didn’t like it at all and it felt like I was giving birth to a cactus! Hospital wanted me to keep it in but I wasn’t having any of it - it’s your body and your choice.

Nik xx

[Blue Kingfisher]

Gosh, respect to you Nik2502 - I think I would have had it removed too if it felt like a cactus! What coil was it btw? Mirena/other?

My symptoms are nausea, fatigue, headaches and depression. I know its the HRT as normally I'm annoyingly upbeat.

I guess I just need to decide whether to see the 3 months trial through or not (6 months is NOT doable unless symptoms improve). I think I will call the clinic next week to discuss my symptoms but I presume they will say these are normal settling in symptoms...I will have to decide where to draw a line in the sand I guess as its only ourselves who know how bad it feels.

Blue x

[Wrensong]

BK, so sorry to hear this.  Yes, I would definitely call the clinic & see what they say.  Have you tried all the progesterone variants now or are there other options available to you if you have the coil out?  Sorry, I can't remember from when we talked about it before.  Still struggling with progesterone myself.
Wx

[Blue Kingfisher]

Hello Wrensong

I tried Utrogestan 200mg vaginally and could just manage 7 days a month but would feel horrendous post bleed. I tried 100mg Utrogestan vaginally but that was even worse, I’m talking no point of living worse & like the time I tried the POP in my early 40s which left me suicidal.

I can only deduce that I need a constant level and specific type of progesterone as my hormones feel constantly unbalanced. I was hoping I would get this stability with the coil. I am getting stability of feeling rubbish all the time if that counts! I don't think the type of hormone (i think its synthetic progestin?) is suiting me.

I will clearly need to look at other options but might need to go back to 200mg Utrogestan 7 days a month as a holding pattern as although the fluctuations were debilitating, at least I got a few days a month of feeling normal. Sorry to hear you are also struggling with progesterone options!

Blue xx

[Nik2502]

The doctor thinks I was allergic to it as I had some itching and swelling. It was the mirena.
If you can cope then keep it but if you feel you can’t get it out. No need to suffer xx

Gosh, respect to you Nik2502 - I think I would have had it removed too if it felt like a cactus! What coil was it btw? Mirena/other?

My symptoms are nausea, fatigue, headaches and depression. I know its the HRT as normally I'm annoyingly upbeat.

I guess I just need to decide whether to see the 3 months trial through or not (6 months is NOT doable unless symptoms improve). I think I will call the clinic next week to discuss my symptoms but I presume they will say these are normal settling in symptoms...I will have to decide where to draw a line in the sand I guess as its only ourselves who know how bad it feels.

Blue x

[Wrensong]

BK if you've only tried Utrogestan & the Levonorgestrel in Kyleena that leaves 2 different prog variants in tablet form: MPA & Norethisterone, plus transdermal Norethisterone in Evorel Sequi/Conti depending on where you are in the transition.  MPA is flexible in that it comes in a range of doses, so you might find there's some leeway dependent on how much oestrogen you are taking.  There's Dydrogesterone in Femoston too but that means oral oestradiol which would probably mess with your thyroid meds initially (increasing TBG), though that should be tweakable if you felt OK on it.  Not sure which progestogen was in your POP though.

I can only deduce that I need a constant level and specific type of progesterone as my hormones feel constantly unbalanced.

Same with me - I was steadier on a conti regimen & have really struggled with sequential.  As we've said before, I think our being hypothyroid complicates the situation.  Homoeostasis is already compromised by the dodgy thyroid being replaced with medication that can never exactly reproduce the way the healthy gland functions.  Add exogenous sex hormones to the mix that again can't quite replicate the way the endocrine system fine tunes things in our optimal fertile years & it can be like rocket science trying to get it all to work together.  Don't give up hope though.

Are you still on T3 & do you know where you are in the transition?   I mean is conti an option for overall stability, if you could find the right form of progesterone?

Wx

[Blue Kingfisher]

Hi Wrensong,

Yes, my gut feel is something conti & stable would be best. I've no idea where I am in the transition, I'm 51, been on HRT for about 3 years I think?! I did try to get hold of Evorel Conti but due to supply issues I couldn't get hold of any and opted to try the coil instead. I will have to way up my options like you say & continue looking for this elusive 'right fit' progesterone/progestin.

I will see how i feel over the coming days/weeks and continue to review my options so I don't lose hope entirely! I haven't discounted the fact that I might be back on the forum spouting on about how glad I was I stuck with it.....doesn't feel plausible with the nausea currently......but time will tell!

x

[Wrensong]

Our posts crossed BK - I was adding to my earlier one while you were posting  !  Struck me while I was ironing I might have suggested progestogens you'd tried already in the POP  .

Yes, Evorel Conti is supposed to be back in the supply chain now isn't it, but theory & reality often seem to differ when it comes to HRT availability  !

Nausea is a horrendous feeling I absolutely hate, so you have my sympathy.  If you can manage to sip some lemon & ginger tea or get a ginger biscuit down that might help settle it, though I know eating may be the last thing you feel capable of right now.  I do hope you soon feel better & can find a way forward.  It can feel never ending trying to get HRT sorted, but don't give up.  You deserve to feel so much better than this & to be able to get on with your life.
Wx

[Blue Kingfisher]

Thanks Wrensong,

Ive decided to try split dosing my oestrogel to 2 pumps am and 2 pumps pm (currently using 4 pumps am) so that might help to keep me more even. If this works, I might be able to trial the Kyleena for longer but if it doesn’t or makes things worse.....I will need to look at removal options.

Here’s hoping split dosing goes ok and doesn’t mess up my thyroid!

Blue xx

[Wrensong]

I take it the oestradiol patches didn't help with stability, or am I misremembering that you'd swapped from gel to those?

[Blue Kingfisher]

Morning Wrensong,

Yes, that’s right. I tried the patches but I didn’t get on with them & I think I’m beginning to realise I might know why. There’s a chance that the Keleena might not be the real villain here. When I had the Kyleena fitted I was on 5 pumps oestrogel (this would put my oestrogen around 400 - I was on 200mg Utrogestan vaginally, 7 days per month, prior to the Kyleena). The gynaecologist suggested I might need to drop the oestrogel to 4 pumps at time of fitting. I thought I’d try continuing with 5 pumps in the first instance to see what happened and a few days in I was having chronic insomnia, night sweats and feeling rough. I assumed (wrongly) that this was because I applied my oestrogel in the morning and there wasn’t enough in my body to counteract the continual progesterone that I was now getting with the Kyleena. So I thought patches would give me a more even flow.

I started at Evorel 100 (equivalent to 4 pumps gel) and that gave me no improvement and in fact made things worse. I reduced the patch down to 75 (equivalent to 3 pumps) and that gave some relief but after one week on this regime I started to feel very hypothyroid.

The long and short of it is, I think I need to be on the gel, apply it as far away as possible from my thyroid medication and also gradually reduce the oestrogel itself.

Yesterday I tried split dosing (2 pumps am, 2 pumps pm) but that had consequences with my thyroid hormone utilisation this morning. I find my thyroid meds never works as well for me when I’ve applied the gel within say 12 hours prior. I might be able to entertain split dosing with the gel when my oestrogen levels have come down though.

For now, I think my plan will be to take my thyroid medication on rising, eat one hour later (this has always suited me best) and apply the gel early afternoon (rather than morning or evening). Hopefully the bulk of the oestrogen will have worn off by then & I won’t have insomnia. I think until my levels are down it’s going to be a balancing act of finding the best time to apply the gel. If I apply it too soon after Levothyroxine...I crash badly....if I apply it in the evening....insomnia.

The nausea, headaches, exhaustion & depression could be a result of too much oestrogen and the low thyroid hormone uptake as a result. I think the HRT clinic I attend have been encouraging me for so long that I need to get my oestrogen levels up however ...I can see how I’ve ended up where I am.

This could all be a red herring and it’s the progestin in the Kyleena that’s giving me the side effects. This might be partly true but I think the oestrogen volume intake is causing thyroid havoc & plausibly more so now I’m on a lower dose of progesterone...

I think ultimately it could be the Kyleena is a good thing for me and will help to get my oestrogen levels down which will fill my thyroid with joy. I think I will need to stop listening for a while to gynaecologists that say my oestrogen levels should be higher and focus on listening to my body....if only it wasn’t so confusing!

I’ll probably be back on here in a day or so saying I’m demanding to have the Kyleena removed but I’m trying to keep logic in the decision making process where I can bear it.

So, I’ve been on the equivalent of 4 pumps now for some time (firstly patches then gel) and was thinking of dropping to 3 pumps from tomorrow. I presume general advice would be to stay on this amount for say 2 weeks then review?

Blue xx

[Wrensong]

Crikey BK, your post goes to show how complicated it can be trying to balance thyroid replacement & HRT.  I'm sorry the steadier oestrogen release in the patches doesn't seem to have been at least part of the answer.  If there's any chance the patches were the wrong dose though, that certainly won't have helped.  Interesting that like me you find even transdermal oestrogen messes with thyroid hormone.  Bloods have just confirmed my suspicion I needed to increase my thyroid meds after my oestradiol patch dose went up a few months ago. 

I wonder whether given homoeostasis is compromised in women on thyroid replacement, we perhaps need to allow longer for our bodies to accommodate any change in HRT?  I find mine throws a wobbly with a worsening of meno symptoms in response to any hormonal fluctuations whether I'm increasing or decreasing HRT & unfortunately also in relation to the cyclical starting & stopping of progesterone. 

If our thyroid meds need tweaking there can also be a knock on effect on the rate at which we metabolise HRT.  So if we are temporarily clearing HRT faster/more slowly because our thyroid replacement is not optimal &/or we have increased/reduced our dose of thyroid meds, in my experience that can cause the body to react with an upsurge in meno symptoms, as though the HRT dose had been changed.

All I can say with any certainty is that I agree how confusing our responses can be & I really hope you manage to get to the bottom of it soon. 

[SueLW]

My symptoms are nausea, fatigue, headaches and depression. I know its the HRT as normally I'm annoyingly upbeat.

I guess I just need to decide whether to see the 3 months trial through or not (6 months is NOT doable unless symptoms improve).

My first Mirena coil for birth control in my 40's made me very low mood, tired, bloated, depressed, anxious and miserable.  I stuck it for 3 months and went to the GP for a review. I told her I wanted it out.  She said I had got this far, to give it another 3 months because she didn't know any that hadn't settled in that time.  I reluctantly agreed.  At some point in the following 4-5 weeks everything cleared, I went back to normal and forgot I had a coil for 5 years.  It was wonderful.  I'm so glad I put up with it. 

I had another fitted a year ago for HRT and was fine from day 1.  My theory is that it depends where you are in the hormonal process as to how it will behave when fitted.  Try to stick with it.  I think we give up too soon because we feel bad, but then we just feel bad for longer in different ways.

I am currently going through the process of increasing my oestrogen levels and that's really tough on me too. But my menopause doctor told me to expect that, and told me to give it at least 6 weeks to settle before I changed anything.  She said it's often easier to cope with it if you have been told to expect it and that it will end.  If she hadn't said that I would have stopped the increase in week one.  Then again at the end of week two and most definitely now, half way through the third week.  But no, I'm keeping going.  I can cope with this and just keep myself quiet and go to bed early and get more sleep when it gets too much. 

I also have atrial fibrillation and the increase is making that more noticeable at bed time which stresses me, and I have a rubbish thyroid that's not responding to medication.  But I'm sure as heck not giving up on any of those things and right now the oestrogen raise is important for both of the other two things so I'm carrying on.

Good luck.  Except the worst and then just ticks the days off.

[Blue Kingfisher]

Thanks Wrensong & Sue for your words of support 

I think it’s definitely more complex and tricky with thyroid issues in the mix! Decreasing the oestrogel feels the right thing to do as does spacing it apart from thyroid meds and bedtime at the moment. At least in lockdown I can apply the gel when needed at home....I’m hoping I’ll be able to process the dose less spikily in the evenings by the time I’m back in the office!

Sue, your experience gives me great hope - thank you so much for taking the time to share it. I’m sure it will be a beacon of hope to many.

I will keep plugging away for the time being and see how I get on. However, I personally can cope much better if I have a plan B (particularly on the really bad days) even if I never use it. So I will also continue to research alternatives in the background in case the Kyleena doesn’t work out/things become unbearable.

I feel a bit more hopeful now I’ve lowered the oestrogel to 3 pumps and applied it early afternoon but I’m under no illusion that this could change fairly quickly.

Fingers crossed I don’t have chronic insomnia, crashing after my thyroid meds tomorrow morning or start breaking out in sweats from the drop in oestrogen. This HRT pursuit is an absolute marathon but I’m determined to keep searching for the best fit for me.

XX