Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Tc on March 06, 2020, 09:36:14 AM
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Hiya ladies. 5 weeks since mirena and implant.
I stopped topping up with sandrena gel a week ago as I was getting very nauseas Also breast pain /swelling so I assumed I was going into excess with the gel on top.
Since stopping the nausea has gone but.breasts are still the same and .I've started having hot flushes.. Last 2 nights I've been like a furnace from the inside out all night long, and my heating is broken!
The severity of it has shocked me as even when my E was low on patches and gel, hot flushes were few. And mild. And I havent had this all night thing since straight after ovary removal before I went on HRT.
I'm confused. I'm thinking if I didnt get this when my E was at its lowest of 150pmol how low must it be now be to cause this.? That might mean the implant has failed. Although I wasnt told there is a possibility of that.
If the implant has failed or is giving me less E than I had before, then how can I explain the nasusea , and my still very sore swollen breasts. Could that be mirena?
This is the problem with changing 2 things,at once. I'm back to trying to unravel symptoms and cause.
Any thoughts or ideas much appreciated. Thank you. X
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Hi Tc. Don't know if this will help you , but nausea was one of my worst symptoms caused by low oestrogen . The nausea only went when I got the hrt right x
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I'm 4 weeks into the Jaydess and I am flushing like mad . Flushing was never one off my symptoms so it has to be something to do with the coil for me. My oestrogen levels are not low and it is too much of a coincidence it happened within days of the coil insertion. I have not had nausea but my appetite has increased as well with swollen breasts.
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Meant to add my implant did fail. Apparently it is rare and I have been very unlucky with my hrt. But after 3 weeks it had not kicked in and never did had to go on patches.
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hi ladies
progesterone does temporarily increase flushing as it's settling into the body as the body starts off by kind of recognizing this as estrogen so awakens estrogen receptors if it has been going on for a while more then 3 months then this could be an indication you are getting to much estrogen i know from experience this was the side effect i suffered when starting estrogen and took 6 months to stop i couldn't touch my boobs brush up against anything i was in agony and wearing a bra was a no no x
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Thank you ladies.
Kballinger. May I ask, did they do a blood test to know it had failed or was it based more on symptoms.
Xx
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TC They did blood tests.
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Thank you kb
Stella. Yes thats exactly it. No sweating just hot from inside out all over. And it lasts for hours.
I think I might need blood test . As i dont have ovaries my own hormones dont muddy the picture as much as if i had them intact.
Xx
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Hi Tc - so sorry to hear you are still suffering.
Yes I agree, only blood tests will tell you whether your oestrogen levels have risen as a result of the implant or whether they have done the opposite ie gone too high. I presume you have heard of the phenomenon called tachyphylaxis (sp?) - which we night have discussed before. John Studd refers to it in the context of implants, but not sure whether it would be less likely if you have no ovaries. Here is the info: https://www.studd.co.uk/implants.php Not wanting to alarm you because I can;t think it would be likely but just so you know. Definitely ask for a blood test so you will have some idea!
Hurdity x
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Thank you hurdity. Very useful to see that information from studd .
Particularly that "The mean plasma levels for 50mg (which is,what I have) at one year is 360 pmol. "
This concurs with a paper I found yesterday written by panay himself. Although he found this level at month 2.
MY level was exactly that on sandrena with no flushes. The fact that I didnt even have significant flushes when my level was as low as 150 pmol on patches suggests to me that in theory my level must be lower than that now which would indicate failure .
Im upset because Before I had it I asked if there was a chance. It would only give the same or a lower level than i already had on the gel and was told it would definitely give more and may even double that's obviously not accurate info going by the studd and panay papers. . I wouldn't have had it fitted if I'd known that. There would be no point.
Studd says it improves symptoms,within 2 weeks. I was told to use sandrena on top for the first four and i now fear that actually confused things. As I decreased the gel I was getting worse especially nausea and I thought that my symptoms were excess as the implant must be kicking in . But as soon as I stopped the gel the climactic symptoms are back to what they were after surgery with no HRT. . So it maybe wasnt excess after all but just getting lower all the time as I decreased gel. In the scenario that the implant is giving me zero then I have effectively now come off eastrogen altogether. .
although the flushes seem to indicate insufficiency Is it o.k to take that factor alone to rule out excess?
With the opposite scenario,
I feel (maybe wrongly) thst tachyphylaxis is a less likely option than failure as if 360pmol is the mean level implant then even adding the 358 the gel gave me doesnt take it to superiphic levels but..in the event that it hasnt failed, i dont know whether using the gel on top might have lead to tachyphylaxis by giving a double dose for nearly 4 weeks and then dropping to just the implant. As tachyphylaxis seems to be about hoiking the level up so that a subsequent fall to a previously effective level becomes ineffective I guess it's a possibility.
. So it's either failure (or at least that its giving me a far lower level than I was promised ) or excess and possible tachyphylaxis.
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I now have increasingly excruciatingly and constant painful breasts and pelvic and leg pain and I'm bleeding every day.
If this could be a symptom of high E then I wonder why I didnt have these symptoms on the level the gel gave me which seems to be equivalent to expected implant level. Going by that, the implant would have to be giving me more than the expected level in order to cause symptoms of excess.
But it's not even clear whether these particular symptoms are excess E. . Possibly its the mirena causing them.either with an imbalance if E is low and not countering the continual P. Or maybe over sensitivity to the progesterone in the mirena. I only had the blinking thing in order to get the implant.
Sorry if this reads convoluted and rambling. . I'm trying to work through what feels like a totally confusing mess.
Obviously blood test Monday morning is imperative but it will then be maybe 2 weeks til I know for sure. And... I feel so dejected. Just when I had my level up for the first time, .now I feel totally messed up again. Who knows how long it's going to take to sort this out
I know it has happened to KB as well so its self pitying of me but I'm thinking "why does everything go wrong for me 😪
Do you think I need to ask for SHBG and T too, I'm still using a sachet of testogel a week. ?
Thank you ladies for trying to help me work through this.
Xx
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TC it's not self pitying at all. I completely get it. X
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Kb :thankyou:
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Hi Tc,
I feel sad for you. It's defenitly not selfpity, you've been through the wringer. To me your symptoms sound like estrogen deficiency, I recognize them.
Feeling hot aka hyperthermia can be a symptom of high progesterone ( unopposed by estrogen)
You would only know if it's tachyphylaxis if your levels have been tested.
Did C&W advice you to stay on Testogel? I' ve tried Testogel but it made my symptoms worse and I suspect because my estrogen levels are to low. Levonorgestrel has some androgenic properties and can lower SHBG if unopposed by (enough) estrogen but I don't know if it acts the same way when inserted as a coil. Do you know what your SHBG level is?
Do you have the possibilty to consult with C&W? You could ask them if it's ok to stop Testogel for a while to see what happens? After you have your bloodtest done, so you don't muddy the waters.
Don't want to confuse you though.
Alicess 🌷
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Thank you Alice. .good thinking.
I've got a blood test form for estradiol and total T that gp accidentally duplicated so I will use it Monday and I can add what I like (cheeky but I've done it before) so I will add SHBG , maybe I should even add P.
My last SHBG test was 6 months ago so probs not relevant now.
Yes. C and w said continue testogel. They offered me a T implant being as I'm oopherectomised but I didnt want to change so much in one go. Glad now I didnt.
When I get results I will email clinic requesting a phone call( that's the only way to speak to someone).
Thanks again. Xxx
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Hi Tc
I can understand your frustration - it's all so difficult to fathom out especially in your situation.
Thing is, some of your side effects eg large painful boobs, could be down to the progestogen in the Mirena, so i think you won't be able to tell until you get a (or two) blood test for oestrogen. That is the only way to knowwhether the side effects and flushes are due to low oestrogen or not. Are there instances of the implant failing? I can understand gel and patches sometimes not working due to lack of absorption but an implant is right there in the skin? I only put the point about tachyphylaxis as a remote possibility but just because it has been mentioned in the context of implants.
You don't need a test for P. Your SHBG and T tests will be illuminating too, since as Alicess says, levonorgestrel decreases the production of SHBG and also displaces T from it and therefore can increase free T in circulation - even without adding testosterone.
The Mirena gives out a much higher dose of progestogen earlier on so hopefully any side effects will settle with time. I think you have been on Femseven before and were OK with this? Apols if I've remembered wrongly.
I do really think you are in the best hands though through the Chelsea and Westminster who are amongst the highest regarded (English) menopause providers in the field I believe and Nick Panay is one of the top people. It just sounds like you have to keep trying different regimes but there will be one for you out there and they have years of experience I presume with women in your position, using tried and tested products, but are able to individualise and tweak regimes (off-licence) accordingly.
Hang in there :)
:bighug:
Hurdity x
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Hurdity thank you so much for your reassurance and advice.
I had thought I was o.k on the 3 months I used femseven 50 (well remembered) but I cant be 100% sure as it was my first try at HRT and I didnt know enough then to figure which hormone might be causing which side effects. . But As you say its early days with the mirena and (touch wood) I'm not getting worse and worse depression wise yet which I did on utrogestan. So if it stays like that it's a huge improvement. Maybe for the moment I need to take mirena out the picture and give it more time. Clarifying the implant situation is a priority.
After another bad night . I realy now think its low E symptoms. The implant should have kicked in by now and it can fail. KBs did. I believe that is a more easily solvable scenario, of the two and I would be happy to go back on sandrena as I know I absorb it.
But tachyphylaxis presents as the very same low e symptoms too. And it's a lot more of a concerning scenario. But don't worry hurdity, you didnt scare me by mentioning it I already knew about it as it is mentioned on c and w website. .
Thanks for the advice on bloods. . Once I get results I can contact the clinic. If my E is low It may be that they tell me to lower Tedtogel i guess until its sorted. Tbh I dont think I would miss it at all it seems to have no benefits for me after nearly a year. .
Thanks again. Much appreciated. I will report back on my results.
Xxxx
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Update.
E has tested at 266pmol. So it's a drop from what I was getting on the sandrena.( 358) Quite a big drop realy proportionately.
So Very disappointing. And a bit confusing. I assume it hasnt failed completely as with no ovaries my E would be lower than that surely?. but its still lower than the implant is supposed to give (300 to 600) which I dont think anyone certainly not my gynae expected.
Xxx
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Hi Tc,
Do you know what your SHBG is? Do you feel a bit better despite lower E?
Alicess X
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Tc, I can't remember how old you are but broadly speaking 300-400 pmol is the ideal level for post menopause women on a maintenence dose of HRT for symptom relief and bone protection etc.
My oestrogen levels are always between 270 and 300 pmol and I don't have any symptoms but I am 58 now very post menopause. Ten years ago that level would not have been anything like enough so it depends on your particular needs and what stage you are at.
Can you top it up until the implant is due to be renewed? Perhaps you can have a higher dose implant after that.
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Update.
E has tested at 266pmol. So it's a drop from what I was getting on the sandrena.( 358) Quite a big drop realy proportionately.
So Very disappointing. And a bit confusing. I assume it hasnt failed completely as with no ovaries my E would be lower than that surely?. but its still lower than the implant is supposed to give (300 to 600) which I dont think anyone certainly not my gynae expected.
Xxx
Hi tc - levels per se above a certain level for bone protection ( which is much lower) are not important (unless too high) but of course symptoms are, so if your symptoms have returned since the implant compared with the Sandrena then that is disappointing. I don't know what the stabilisation period for pellets is as they are unlicensed so the product info is not available on EMC unless you know the brand name and I can look it up?
Don't forget the Sandrena levels will vary according to time since gel application and to some extent where the blood was taken relative to where you applied the gel. I presume you could be offered a top-up if necessary like you did when you first had the implant?
Absolutely - you would have nowhere this level without the implant. Post-menopausal levels are variable for different women but low. I wold be very happy with an estradiol level like this - but like I said it is your symptoms which are indicative.
Hurdity x
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Alice's. SHBG and T not back yet.
Mary g . I'm 55 but I was still reg periods at 53 when I had ovary removal so in a way it wasnt a slow decline being eased or balanced by HRT it was a,sudden drop . So I guess my body has to get used to going from early peri to post overnight and atop craving the previous level and learn to live on lower amounts.without such severe symptoms. I'm hoping with time that will happen as it would have naturally in my mid late 50s.
Hurdity. My low e symptoms are all still there. Flushes returned compared to sandrena too.
But. There is some good news. Finally. !!!
I havent wanted to speak too soon but .depression and even anxiety have eased for the first time in 18 months. which is a biggie. Its huge actually. It has made so much difference to me. It's not down to any outside factors or changes in my life. Given as I always thought it was hormonal then maybe it's down to the consistency of dosing the implant gives compared to gel and the mirena does the same. Maybe less fluctuation was the key to that. In which case it's an advantage of my new regime over the gel.and utro. But it's just obviously not high enough to combat the other symptoms.
I dont know the name of the implant just that it was 50.
I could try topping up with sandrena. Just a bit at first and see if it helps flushes etc. Its a plan.
Thank you all stay safe. Xxxx
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So glad to hear this Tc. I'm sure you're right about the consistency of dosage. Let us know how you get on with the Sandrena top up.
JP x
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Thanks jp I will do. X
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That sounds really promising Tc, I'm so pleased to read this x
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Please to hear this too., Tc. Maybe topping it up with Sandrena will get rid off other symptoms too. Take care Xx
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Tc, great news the reduction in depression and anxiety, this is very likely to be because of the hormone stability.
How are your migraines? If you have noticed a reduction in them, I think you are on to a winner with your new regime.
I've been reading up on oestrogen implants and they like the most stable delivery system for oestrogen and testosterone.
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Thank you ladies.
Mary I have had headaches but I havent had a bad migraine (the sick ones I call a "bonzer) for a few weeks :)
I was due to get the testosterone one in may but not sure what will happen with that now. But just to be feeling better mentally is huge.
Xx
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Hi Tc,
So happy for you, we do need good news :-*
BeaR.
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Thanks beaR xxx
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Tc, the fact that your migraines have subsided would suggest you have achieved hormone stability which is great. As you probably know, migraines and mood are closely linked.
Fluctuating hormones are bad news for migraine sufferers and according to my migraine specialist, migraines with aura are caused by oestrogen spikes (sometimes referred to as oestrogen dominance) and migraines without aura (often the painful, sickly variety) are caused by sudden drops in oestrogen. Obviously hormone stability is a must for both types of migraine.
The headaches could be a sign of low (low for you that is) oestrogen levels so it might be worth topping up if you can and see if the headaches and other symptoms subside.
Like BeaR says, it's so nice to hear some good news for a change!
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Thanks Mary. Keep.safe. xx