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[Tc]

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

[Dotty]

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

[KBallinger]

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. 

[KBallinger]

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.

[Sammiejane]

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

[Tc]

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

[KBallinger]

TC They did blood tests.

[Tc]

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

[Hurdity]

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

[Tc]

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.
. 
 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

[KBallinger]

TC it's not self pitying at all. I completely get it.  X

[Tc]

Kb 

[Alicess]

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 🌷

[Tc]

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

[Hurdity]

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

 

Hurdity x