Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Blue Kingfisher on September 02, 2020, 05:55:34 AM
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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
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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?
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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.....
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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
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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
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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 😪
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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
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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
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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
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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
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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
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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
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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.
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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
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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
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Thanks so much Wrensong, you’ve helped me enormously, again x
It makes me feel less worried if you would also get flushing if you increased your oestrogel so I think I will stick with this for a while to see if it helps. I will also try using the T in the mornings, one hour after Levo but will try that from Friday.
I wasn’t great on Utro either as the whole sequi cycle thing was causing me issues but I wasn’t spacing my thyroid meds away from my oestrogel so that might explain some of the upset. My thyroid meds wen in fine when I was on the Utro days but not when on oestrogen only but also suffered I think from the pg withdrawal.
I haven’t written off the Kyleena just yet.....but I might do. I probably need to give it one last attempt on higher oestrogen & taking T at the right time. Whether I can stand this approach will depend on how bad/desperate I feel over the next week or so.
I will try and call the clinic tomorrow & ask them how quickly I could get a physical follow up appointment if I kept my Tuesday one virtual. I’m pretty sure the gyne will say to give it longer but obviously I will need to make a call on that ultimately.
Will let you know how I get on xx
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It's a pleasure BK. I hope something useful comes out of it, but it can be pretty complex juggling thyroid & HRT, so I think the best we can do is compare notes & pass on what we've learned.
The flushing sensitivity - I think we hypothyroid women may just be less able to accommodate other medications as smoothly as someone with a self-regulating thyroid. A healthy thyroid fine tunes our metabolism exquisitely according to whatever else is affecting us, in conjunction with complex feedback mechanisms, to keep things running smoothly. When we have to take one big dose of thyroid meds a day my feeling is there are bound to be differences in the way our bodies cope compared with someone with a healthy thyroid.
The T - I wouldn't worry too much about precise timing, as long as it's in the morning. Presumably you'll want to get it out of the way before work anyway. I only apply mine roughly an hour after my thyroid meds because I always shower first thing & then put on the Testogel (alternate thighs) so it dries while I'm sitting on the bed blow drying my hair. Testogel dries really quickly (I think you said yours is Testim?) but that way I worry less about it getting rubbed off while still tacky as I don't dress till after my hair's dry which takes about 20 mins.
Like you, I find my body doesn't cope well with a cycle. It's not the bleed as such, but my body really, really hates the prog phase then takes an age to readjust afterwards, so that I end up with only 7-10 days out of each cycle feeling my best. I'm just about to trial long cycle to minimise the prog, but in theory that should be less risky for me because my E is low dose & we know from scanning what dose of MPA keeps my lining very thin on that amount of E.
Anyway, good luck with the tweaking. :)
Wx
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Hi Wrensong I just wondered if your sensitivity and vasomotor symptoms began to decrease once your body adjusted to the change in oestrogen?
I ask because I increased my oestrogen by a pump and began flushing and skin sensitivity and burny skin on my chest. Just wondered if your body adjusted? Thanks x
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Hi Scampidoodle, have had quite a few changes of regimen over the years & whether up or down in dose there has been a temporary upsurge in vasomotor symptoms - I think my body still doesn't cope well with fluctuations & suspect the thyroid issue doesn't help in that respect. I have not yet found my perfect HRT fit (too long a story) so still experiencing some vasomotor symptoms, but the increase in severity following changes of regimen has usually declined after a few weeks, except on those that were very unsuitable for me, which have been various combinations with Utrogestan. I think some of us maybe need to give our bodies a bit more time than others to adjust, but the standard advice is stick with any new regimen for 3 months unless it's intolerable or your gut feeling is that it's really wrong for you. A long time to persevere when we're feeling rubbish I know & only you can decide what's right for you, but if it's tolerable it's probably worth waiting to see how you adjust. You don't mean by skin sensitivity that there's a local reaction in the skin at the site of gel application do you?
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Thanks for replying. That’s really helpful. No, the reaction isn’t on my arms where I put the gel. It’s my chest and upper back that feel internally hot and light burning and my chest gets flushed red. My cheeks are a little stingy too and a bit re flushy. My eyes were also stinging but that’s improved a little!!
I think you’re right that some bodies take a lot longer to adjust. I feel like mine flips out with any adjustments.
I crept up slowly on oestrogel but in doing so I’ve had lots of symptoms I wasn’t even getting before like heart palpitations in the night and hair loss and insomnia! and they’ve finally subsided.
So I live in hope the flushing will as I didn’t get these symptoms pre 3 pumps and I generally feel better emotionally since increasing.
It’s a frustrating journey I’m only just embarking on so I do hope you find your perfect fit soon. Many thanks for replying and I’ll persevere and see if this subsides. It’s not intolerable if it’s short term. I just couldn’t understand why it was happening!! X
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Scampidoodle, I vividly remember my Mum's neck & chest flushing badly well into her 60s & possibly 70s (no HRT) though she was postmenopause in her mid 40s. She especially flushed in the evenings when she was sitting quietly & in peri & the early years of postmenopause (pre-HRT for me) evenings & night time were always my worst for vasomotor symptoms. Though I feel incredibly hot all over when they strike at night, the flushing mainly shows in my face. I get up looking like a tomato :o ::). Not a good look!
Distinct from the overwhelming feeling of heat from head to toe, I also get an uncomfortable intermittent burning sensation in the skin of my arms & legs, like being scrubbed with a wire brush. There's something called formication in menopause that gives a variety of neuro type symptoms & burning is listed as one of them, though I think more commonly women describe feelings of insects crawling on the skin (the word formication refers to the formic acid ants produce). Wondering whether you feel your burning fits this?
With the stinging eyes - are they dry do you think? As that's common in menopause too. I have to use artificial tears for it.
Just a thought, if both cheeks & eyes sting, you haven't started a new facial product you're reacting to, have you?
I feel like mine flips out with any adjustments.
I feel your pain!
If most of the adjustment symptoms have now settled & you feel better emotionally, it does seem worth persevering doesn't it? Do post to ask about anything you're unsure about though - it's such an uncertain time when you're just starting out & there's a wealth of experience on this forum. I wish you luck with it.
Wx
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Thanks for your info and reply. My chest feels like it’s burning now and I’m just sitting on the sofa! It’s weird as it’s not hot to touch but feels like it’s burning inside. My neck too. Your description of the wire brush rings true!
No new products being used. Started the three pumps last Tuesday and this all started last Thursday!
You’re right, if I wasn’t feeling more steady in myself I would be more reluctant to drop back to 2. But feels like I should give it a bit more time and hope it’s another thing that will stop like my hair (started falling out when I started one pump and stopped after 10 weeks phew) and the palpitations that I had this weekend!
Thanks for being so welcoming it really helps to have people who have knowledge about all this x
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It's a pleasure Scampidoodle. We are all learning from each other & there are some lovely women here who are generously open about their experiences :)
Started the three pumps last Tuesday and this all started last Thursday!
Really seems like reaction to the increase doesn't it? It can be so unnerving when it's all new. I remember that so well. What am I saying - it still gets to me now! Palpitations were the worst for me as they just went on & on, but the thyroid complication has a lot to answer for. Bizarre & weird don't begin to cover what can happen at menopause :o ::)! But that's the beauty of this forum. Whatever's going on with us someone else will almost certainly have had the same. Keep posting, don't be alone with any worries.
Wx