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[Blue Kingfisher]

That is the question, & it’s a question I’m now facing after having the Kyleena fitted 3 months ago. I’m on 4 pumps oestrogel (I absorb poorly) just had my bloods done & hoping the results will be back by tomorrow so can update on those.

My symptoms are very low mood, no interest in anything, permanent exhaustion, groggy head & headaches, difficulty concentrating & working, nausea, short tempered, zero libido, poor sleep quality and legs feel like lead - feeling like I’m 90 not 51!

Not sure how much longer to give this a try? I have a gyne appointment next Tuesday which is currently virtual but thinking of changing it back to a physical visit so I have the option to get it removed. Need to make a decision on the appointment type fairly quickly though....

Any advice anyone?

My gut feel is that my body doesn’t like synthetic progesterone. I tried Utrogestan but having the ups & downs of a cycle with the withdrawal bleed left me feeling dreadful for most of the month with a one week window of feeling OK. My big concern about trying the Kyleena or any coil was the risk of feeling really bad all the time rather than totally dreadful some of the time and my fears seem to have come true.

I know it’s common sense to give these things a good try but how long is enough? My symptoms have got worse over time, not better.

Id go back to Utrogestan but I have some learnings now to do with another medical condition I have, (timing of thyroid medication when I’m on the oestrogen only phase) I could try which might make the dreadful times less dreadful. I’m grateful to the Kyleena for teaching me that but I’m not benefiting from it in any other way at the moment.

Blue x

[Brit66]

Sorry you're having such a difficult time. You say that you dont absorb estrogen well, do you think that it's possible that this is the issue, that you aren't getting a high enough dose of it? I've read so many stories of women finding that when they had a higher dose they felt much better almost immediately. Is there any better method of delivering the estrogen that you could use, eg vaginally?

[Blue Kingfisher]

Hi Brit66,

Yes I’ve considered that this might be the case. I will see what my bloods say when I get them with regards to my oestrogen levels but I’m mindful that no matter what the blood test results say.....different women need to be on different amounts to feel well so I will only use it as a guide.

If my levels have gone down however (I was on 5 pumps when on Utro but gyne reduced It down to 4 pumps due to Kyleena giving off a lower dose of progesterone) yes, I’ve considered I might feel less unwell on more oestrogen.

I will see what my blood test comes back as.....

[Perinowpost]

So sorry to hear you’re struggling with the Kyleena Blue, I had a failed attempt at having one fitted and have always wondered if it would have been the solution.  You’re symptoms sound identical to mine when I had the mirena.  You may remember I stuck with it for 6 months (as recommended) but then had it removed as symptoms were not improving.  Interestingly I felt better within 48 hours of having it out - low mood disappeared, and massive rebound of libido which had been completely quashed whilst on the mirena. From what you say I feel your issue is progesterone sensitivity like mine, my specialist told me my receptors are particularly sensitive.

You have 2 options as I see it: 1) continue with the Kyleena and it may settle - although when this may be is anyone’s guess. A friend of mine had a mirena and it took 10 months before it settled, so based on this maybe it could be less as the Kyleena has a lower dose.

OR 2) go back to the cycle of utrogestan. There’s nothing else better on the market (and I know I’ve tried everything). I’m currently nearing the end of my 7 days and it doesn’t get any easier I can tell you. I would say I lose a week per month feeling rough on it, but at least I then have 3 good weeks.

Sorry I can’t give you any more promising solutions. Let us know what you decide x

[Blue Kingfisher]

Thanks Perinowpost,

Yes, I fully identify with your scenario! My gut feel is to get it taken out, the synthetic progesterone just feels wrong in my body, there’s no other way to describe it. I actually felt Ok whilst on my Utro application days, a bit coma ish on say day 5 of application but i only used 200mg 7 days a month so it was totally copable. My problem came post bleed, kicking in about day 8 of bleeding cycle when progesterone had plummeted out of my body and I was on oestrogen only. This would last for a good 2 weeks or so until a few days before being due to re-start Utro again.

However, I now know what that dreadful reoccurring patch was all about......to cut a long story short, the oestrogen was blocking my thyroid medication. I could take it fine alongside oestrogen when I had enough progesterone in my body (Utro/natural) but not otherwise. Having the Kyleena has helped me to realise I have to apply the oestrogen as far away from my thyroid meds as possible which I’m now doing.

This did improve things but I have all the symptoms I listed in my last post...when I was taking my thyroid meds close to oestrogel application whilst having the Kyleena.....well, let’s just say I felt extremely ill & leave it at that! Unable to work basically & struggling to get out of bed.

I will see what my bloods say but airing on the side of having a physical appointment next Tuesday (if they’ll let me switch) & having it removed to re-try Utro.

You say you’ve tried everything.......so have you tried the Gluck clinic approach for example? This might be a last chance option for me if Utro fails long term.

Blue x

[Perinowpost]

Hi Blue

The prog withdrawal is the worst part for me also, but doesn’t last as long as yours - you have my sympathy - and of course I don’t have thyroid issues which must complicate everything.

No I haven’t tried the Gluck method but have thought about it and spoke to someone who has had very good results with it.  I went private and tried another form of prog - natural progesterone 50mg - unfortunately, after good results initially I developed other symptoms which were worse than the utrogestan and concluded it’s continuous prog that my body dislikes (I could never tolerate the pill).

I don’t know I may try again, but how many options do you try/and how much money do you throw at this dam infuriating problem!

It’s not easy is it 😪

[Blue Kingfisher]

Hi Perinowpost,

Gosh we sound quite similar, I couldn’t tolerate the pill either and also remember trying the progesterone only pill about 10 years ago and I felt genuinely suicidal. I never want to feel that bad again & it’s a concern I raised about using either Mirena or Kyleena but was assured it was likely to be very different as it’s delivered directly into your body and most women don’t experience side effects after they have settled.

The feeling is similar to me as far as I am concerned to the POP only not as intense but enough to give off all the symptoms I’ve listed.

So you tried 50mg natural progesterone? Was that in tablet form taken orally? How does that differ to what the Gluck regime would offer? Any ideas?

Glad you get some time feeling OK each month - hang onto that!

I’ve just called the doctors and my blood tests are actually back so will pick them up later....will be interesting to see what my oestrogen levels are at after dropping from 5 pumps to 4.

I wonder if it’s worth asking my GP if the Kyleena could be removed at my local surgery or best to have it done by the gyne......?

Can’t say we don’t try these things?! Onto the next guinea pig trial at the expense of our quality of life eh!

Big hug.

Blue x

[Wrensong]

Hi BK, so sorry to hear the Kyleena-Oestrogel combo hasn't done what you were hoping.  You must be so fed up - been a long time trying to sort it.  I know the Levonorgestrel in Kyleena is androgen derived so what I'm going to suggest now may not be the answer for you, but if you're thinking of going back to Utro did you ever try adding a little Testosterone to your regimen when you were on Utro before with whatever form of oestrogen?  Or have your T & SHBG levels tested?

I'm thinking of what you said here, the italicised bits especially:-

My symptoms are very low mood, no interest in anything, permanent exhaustion, groggy head & headaches, difficulty concentrating & working, nausea, short tempered, zero libido, poor sleep quality and legs feel like lead - feeling like I’m 90 not 51!

I added T to my HRT a few months ago (postmeno with no ovaries so deficient in T, also on thyroid replacement) & have felt improvement in focus, mood, energy, libido & to some extent sleep. 

Sorry if you already know this - I know you're pretty clued up, but hypothyroid women on replacement thyroid meds & oestrogen may struggle to maintain decent T levels because both exogenous oestrogen & exogenous thyroid hormones increase SHBG, effectively lowering Testosterone.  You are on quite high E & thyroid replacement so I just wondered what you think?

I found the following link a bit technical but the relevant bit is:-

"Endogenous or exogenous thyroid hormones or estrogens increase SHBG levels. . .  This process can result in bioavailable testosterone levels that are much lower than would be expected based on total testosterone measurements alone."

https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/9285

Please disregard it if you've tried T already.  I couldn't read & not post tho, just in case.
Wx

[Perinowpost]

Hi Blue

Yes it was tablet form taken orally last thing at night. I think the Gluck regime is a lozenge which dissolves under the tongue.

Good luck with whatever you decide, maybe one day one of us will crack this x

[Blue Kingfisher]

Hi Wrensong,

Yes, I tried Testim whilst on Utro for many months unfortunately but I had such a hard time trying to get my oestrogen intake sorted whilst on Kyleena balanced with the thyroid meds that I confess I left the testosterone out of the picture (stopped applying it) as I felt I had too much to deal with at the time.

So good call & ive just started to reapply it for the past week or so. No noticeable difference as of yet but no idea how long it takes to feel any benefit.

I’ve picked up my latest bloods by the way & they show my oestrogen at 399 (77 - 2400) and that’s after being on 4 pumps for 3 months. The highest my oestrogen levels have been is 464 and that was when I was on 5 pumps.

I don’t know if it’s the Kyleena that needs to come out or my oestrogen that needs to go up or both! I tried 4.5 pumps yesterday & wondering if I should do the same today to see if it helps. Might be good to know this before my Tuesday appointment but I find when I increase it, it makes my insomnia worse?! I’m not bleeding at all on the Kyleena which presumably means it would be fairly safe to try increasing the oestrogel?

My thyroid bloods look pretty stable: Free T4 - 17 (9-19), Free T3 - 4.9 (2.60 - 5.70).....but will ask on a thyroid forum but thrown this one in since I know you will understand them Wrensong! 

Blue x

[Wrensong]

I think it was entirely reasonable to leave off the T if you were changing to Kyleena, given Levonorgestrel is androgenic.  But with IUDs I guess it depends how much of it gets into the system & we hypothyroid women seem to be a law unto ourselves & can end up having to do a lot of detective work to get sorted  .

What level of E are your meno clinic aiming for or does it depend on how you feel?  Did you feel better when your E tested higher?  Your current level looks pretty decent but you're younger than me & may need more.  Maybe wait & see what the clinic says next week before raising E again if you feel there's a chance it's lowering your T too much & it worsens your insomnia? 

Your thyroid bloods look good  .  If you are still not taking T3 you seem to be converting really well.

I hope the meno clinic can help with the Kyleena dilemma & that you soon feel much better whatever you decide to do.
Wx

[Blue Kingfisher]

Ah i see what you mean with the Klyleena being androgenic, I didn’t actually realise this.....So my insomnia has got worse since I’ve started re-applying the testosterone & also feeling worse.....do you think this could be related? Or is insomnia more related to lower testosterone levels which would also make sense I’ve only just starting applying it for just over one week.

I don’t know what number the meno clinic are aiming for but they say my levels are fairly low despite being on 4/5 pumps ostrogel daily.

I felt better when my oestrogen was higher in my better patches on Utro.

Yes, I’m on T4 only....at least that looks to be going in the right direction! I’m very tired all the time though so it just proves how test results can tell you something & nothing at the same time!

Blue x

[Wrensong]

So my insomnia has got worse since I’ve started re-applying the testosterone & also feeling worse.....do you think this could be related? Or is insomnia more related to lower testosterone levels which would also make sense I’ve only just starting applying it for just over one week.

I wish I could answer that definitively but all I can say is I think T has improved my sleep to some extent.  When I am actually asleep I think it's better quality, deeper sleep for T, but I still get far too little sleep overall.  Insomnia is a very long term problem for me & still very much a work in progress, in fact the main reason I've persevered with HRT.  A very well respected menopause specialist (since retired) told me years ago at my first HRT consultation that T can help reduce night sweats & is important for sleep.  But concentrating on trying to solve the ongoing progesterone problem, then having a long break from HRT, we only just got around to adding T to my HRT.

If you google there's quite a lot of info about T's importance for sleep but unfortunately much of it in relation to men.  I reason that I never met a man who couldn't sleep anywhere, indefinitely & at the drop of a hat, but so many women struggle to sleep well & I've long wondered whether testosterone is a factor in that difference.

There's some interesting stuff on T's importance for women here if you have time & inclination:-

https://thebms.org.uk/publications/tools-for-clinicians/testosterone-replacement-in-menopause/

https://www.sciencedirect.com/science/article/pii/S0378512213000121

https://www.menopausedoctor.co.uk/menopause/sleep-and-hormones

If it's some time since you used T, I think one of the articles mentions 8-12 weeks for effects to build.

I don’t know what number the meno clinic are aiming for but they say my levels are fairly low despite being on 4/5 pumps ostrogel daily.

Do they mean low considering the dose of gel you're on (poor absorption) or low for what they think you need to feel well?  If you felt better on more E then I suspect that's significant.

Yes, I’m on T4 only....at least that looks to be going in the right direction!  I’m very tired all the time though so it just proves how test results can tell you something & nothing at the same time!

Yes, so frustrating to have thyroid results that look on paper as though you should be running around like a spring chicken if you feel nothing like that.  I feel for you.
Wx

P.S. forgot to say - I'm sure you know this but just in case - advice is usually to apply T in the morning - not at night.

[Blue Kingfisher]

Hi Wrensong, they mean my oestrogen level is low in relation to dose & also on the low side generally. I’m showing beginning signs of osteoporosis & they would like my levels to be at least 500 but reaching towards 600.

I didn’t know I was supposed to apply the T in the morning! That might explain the insomnia as I’ve been applying it with my oestrogel late afternoon/early evening. Do I not need to keep my T application away from taking my thyroid meds then? I take Levothyroxine every morning on rising. I’ve tried taking Levo in the evenings but this hasn’t worked well for me on any previous trials. Pity because then I could more easily space the oestrogen & T doses....

I decided to try upping the oestrogen yesterday and today by half a pump yesterday and full pump today but so far all it’s done is increase my body heat and now starting to bring on flushing....

Thanks for the T info & links x

Looking at my latest oestrogen levels, they aren’t drastically off what they were when I was on a higher dose. That makes me think the symptoms I am experiencing are either: in relation to the introduction of T late afternoon/early evening or the synthetic progesterone from the Kyleena. I think to be honest it could be both as I’ve felt very flat since having it fitted but things have also got worse since starting T.

Will start using T in the mornings from Friday, might skip a dose tomorrow as I’m not sure if it’s helping of making things worse....

Blue x

[Wrensong]

Yes, I see it's low in relation to dose.  Gosh they want it quite high don't they, but if you have osteoporosis & feel better with higher blood levels that makes perfect sense.  I have osteopenia so another reason for persevering with HRT but my Endo wants my E kept as low as poss.

No I don't think applying T as gel in the morning should affect your thyroid meds.  I take my thyroid replacement as soon as I get up & apply T about an hour later.  Not noticed any interaction.  From memory, our T is naturally higher in the morning so we're trying to replicate what the body does.

Yes, I also get the increase in vasomotor symptoms with every HRT dose change, whether up or down.  Also an upsurge in flushing etc when my thyroid meds change either way, I suspect because when that alters our metabolic rate it affects the rate of clearance of HRT.  Quite the rollercoaster ride this HRT with thyroid meds isn't it?!

If adding T has definitely made things worse & you were better on Utro than Kyleena I wonder whether androgens are not right for you?  Maybe you already produce enough of your own.  Yes, I agree you need to be vigilant if there's any chance T's making things worse.  But perhaps just worth trying in the morning if you want to experiment. 

I really struggle with progesterone.  My body seems to absolutely hate it.  So I sympathise with your Kyleena/Utro situation.  But Utro is definitely the worst for me.  If it were the only option I wouldn't be able to take HRT.  End of.

Do let us know how you get on with the meno clinic?  Are you going in person or keeping the teleconsult?
Wx