Menopause Matters Forum
General Discussion => New Members => Topic started by: ValerieG on January 04, 2021, 09:49:25 PM
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Hello, I am having a difficult start with HRT and hopping to get some help.
I am in peri-menopause and need to start HRT due to vaginal anthropology, joint pain, fatigue, and minor night sweats. I had never had PMS in my life, but apparently I can not tolerate even a little of micronized progesterone, even vaginally. As a result, I was fitted with Jaydess/Skyla IUD 2 weeks ago. My cramps are mostly gone, there is still some light spotting, which is expected and not an issue. A few days after getting IUD fitted I have got massive night sweats, some acne, and swollen fingers and ankles despite using 0.75mg of Divigel/Sandrena and a little of Testosterone cream. I increased Divigel to 2mg and night sweats and acne mostly stopped, but swollen fingers and ankles presisted and my breasts became painful. I reduced Divigel to 1.5mg and my night sweats are back, but I still have painful breasts and swollen fingers and ankles.
How do I fix it?
Thank you so much in advance!
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Oh sweetie, that sounds painful, are swollen fingers and ankles a side effect of oestrogen, levonorgestrel or testosterone? Sorry I can't help! Someone knowledgeable will come along soon. Hang in there :-*
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Sage, thank you so much! I have no idea why my fingers and ankles are swollen. That have never happened to me before, even during pregnancy. I am very scared, I hope somebody here will help me to figure it out.
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ValerieG I would say it is most definitely a reaction to the continuous progesterone. I swell up if I take any prog at all. I had the mirena for 6 months and was very swollen during that time, it resolved itself as soon as I had it removed.
Hopefully as your coil is lower dose it may settle given time. Keep us posted x
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Perinowpost, thank you so much for your response. Is there a way to counteract this seelling? This IUD is literally my last reserve as progesterone (even vaginal) sedates me and mini-pill makes me supper nauseous. Without HRT I have severe joint pain and athtopic vaginitis 🥲🥲🥲.
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ValerieG I’m in exactly the same boat as you. I have tried every progesterone going and have been unable to tolerate any. I currently use utrogestan vaginally for 7 days (under supervision and with regular scans), and only just manage.
I don’t have any answers for you I’m afraid, except to give it time and hope your body gets used to it and it settles down. I remember trying water tablets when I had the mirena but they didn’t work.
My advice would be to give it 6 months if you can bear it. I persevere as I prefer to be on hrt rather than off it for all the benefits it gives me, and so I put up with the short dose of prog x
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I have tried vaginal progesterone and it gives me urogenital symptoms in addition to complete sedation. It is so confusing as in addition to swelling I also have breast tenderness and severe night sweats. Night sweats were always symptom of low estrogen for me, but I am reading that swelling and breast tenderness are the symptoms of too high estrogen. I am completely puzzled and super scared.
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I think the breast tenderness and swelling are the levonorgestrel, probably the night sweats too. At least you’ve not suffering from depression, it gave me terrible low/flat mood. You can only give it time, let us know what you decide x
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Perinowpost, you mentioned that you tried a water-pill... which one that was and why is did not work? What are your thoughts about Spironolactone?
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I tried Aquaban but there was no discernible difference that I could see anyway. I’m not familiar with spironolactone but after googling it it looks like a pretty heavy duty drug, I wouldn’t take it unless your doctor recommended it x
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I had a call with my doctor today and she ordered some blood tests. She thinks my estrogen may be too high. I do not understand how I can have the night sweats if the estrogen is too high. Will update you once labs come back.
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I have got my blood tests back:
Estradiol 195 pmol/L
TSH 3.20 mIU/L
Free T4 0.9 ng/dL
Since I wrote last time I have got my period and swelling substantially subsided, but still a bit remaining. My night sweats became worse and I am getting some hot flashes during the day. My doctor said that my estradiol is normal (is it?) and offered me to try 0.03 patch. That sounds confusing to me as 0.03 patch sounds less then 2mg of Divigel.
What are your thoughts?
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I’m no expert but last time I had my levels checked estradiol was 388 and I was told that was average. It’s certainly where I feel good. Going on this yours seems low to me x
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What are you using to achieve these estradiol levels? I am using 2ml of Divigel/Sandrena and I feel like on rollercoaster - I can totally feel my levels going up after applying the gel (and I start to feel better by noon) and then falling down by 4pm (where I start feeling hot flashes)
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I have got my blood tests back:
Estradiol 195 pmol/L
TSH 3.20 mIU/L
Free T4 0.9 ng/dL
Since I wrote last time I have got my period and swelling substantially subsided, but still a bit remaining. My night sweats became worse and I am getting some hot flashes during the day. My doctor said that my estradiol is normal (is it?) and offered me to try 0.03 patch. That sounds confusing to me as 0.03 patch sounds less then 2mg of Divigel.
What are your thoughts?
Hi ValerieG, your FT4 blood test result is on the low end of normal range. Maybe you are having oestrogen fluctuations (probably caused by your own erratic ovarian function, rather than the gel) and this in turn can decrease thyroxine levels and cause fluid retention.
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Yeah, I saw that T4 is at the very low end of what is considered to be normal and I feel that estrogen part needs to be figured out first. The think is that I have been suffering from VA, migraines, and joint pain mostly with very minor night sweats (I would not even pay attention if that would be my only symptom) before going to IUD and Divigel. Now it is hot flashes and night sweats are my predominant symptoms. So probably I do have higher levels of estrogen sometime in the middle of the day after morning application and these intermittent higher levels improve my VA and joints a little, but then my levels crash and all these flashes start. So I do think 2mg Divigel is not working well for me, but I am afraid that 0.03 patch will make my levels just low across the board
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Is this a generic estradiol patch? It all depends on absorption, really. If you're not absorbing the gel on a constant basis, maybe the patch is a good idea even if it's a low dose one. Have you ever been on levonorgestrel before?
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I’ve got to say I have much better absorption on patches than gel x
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Yes, I have tried a generic Mylan 0.05mg patch as my insurance does not cove a brand name. I have never been on levonorgestrel before, i am intolerant of vaginal, oral, and even topical progesterone even-though I never had a PMS in my life from my own progesterone.
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Same here, couldn't tolerate vaginal Utrogestan and never had PMS, but I suppose it's the high or continuous dose that is the problem. Haven't tried topical, not available on the NHS. Try the patch, if it doesn't control symptoms your doctor might prescribe a higher dose.
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Hi Valerie G
Sorry to hear about your problems. Although one-off hormone tests are not particularly accurate, that oestrogen level may not be sufficient to control you night sweats but also some women do get increased night sweats when having high progestogen so even though the Jaydess is lower dose it will still be giving out more prog initially. I did look up the data once and posted on here but no idea where that thread would be!
I didnt even know there was a 0.03 patch!!! This is far too low if its equivalent to 30 mcg. If you meant 50 mcg or 0.05 then that would be the minimum really. Some women do absorb better from patches than gel, although that estradiol reading is not very low but a bit lower than some docs like and if not controlling symptms then you definitely need to increase.
The other thing is your TSH level. Although you are within the reference range (what was the lab range?), it is higher than some docs like to see and in US I think this would be classed as too high? Well perhaps used to be? Do you have any other symptoms of underactive thyroid eg feeling cold, being overweight and fatigued?
Maybe post a separate thread on this if you think thyroid might be a problem because there are others who are very knowledgeable about this - Wrensong for one - and I know she was on here recently.
Hope this helps :)
Hurdity x
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Hurdity, thank you so much for your reply. I know my TSH and T4 do not look good at all, while are still in the range. In US only “functional” and “anti-adging” doctors look at thyroid tests the right way, for all others if you are able to work - you are good. My daughter has Hashimoto and I did a very detail research to bring her to health. So yeah, my thyroid kinda sucks, but if one needs to use a medication to balance thyroid, estrogen levels need to be stabilized first. So I am trying to figure that part now before starting thyroid medications.
As for my estrogen levels, I did not apply the gel the morning of the blood test, so 195 was my lowest level of the day. The problem is that I literally felt how my levels rise during the day after I apply my 2mg of Divigel and then fall and by 4pm I start having all the flashing. So I am thinking that were mostly the fluctuations that caused my problems.
So somehow, I convinced my doctor to prescribe me 75mcg a day patch and I put it on yesterday morning. I felt fine during the day and evening with no flashes. Bleeding from my IUD (fitted 4 weeks ago) almost stopped. I had the best night sleep possible during the night with no night sweats, but in the morning, right before waking up I got something like adrenaline rush and Restless leg at the same time. I woke up, took my blood pressure 129/82 (could be lower, but nothing to worry), but I still do not fell quite myself and still have a bit of that restless leg/arm feeling.
I do not know why nothing works for me the way it should!??? 😭😭😭 Does somebody know what it is and what to do about it? This forum is wonderful and I so much appreciate your help! Thank you in advance!
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While 75mcg patch instantly took care of all my swelling and flashes - it just stopped them in 4-5 hours, but I turned out to be allergic to it as adrenaline rushes and restless leg followed by itching all over the body. I had to pill the the patch off and adrenaline rushes and itching went away by evening, but hot flashes returned 😭. I had very similar reaction for Estrogel. So I did learn that I need a higher estrogen to get rid of swelling and hot flashes, but I do not know what to use as I am allergic to Estrogel and twice a week patch (i have got Mylan). Divigel/Sandrena either does not provide high enough levels (at 2mg a day my estrogen at 195) or maybe levels fluctuate too much. I tried to split the dose of Divigel and use it twice a day, but it made it even worse. What are my other options?
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What is the right way to split Sandrena dose for more even levels? Do I go 50/50 or apply more in the morning? I feel that it wears off at around 4AM when I start having restless leg and night sweats.
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Hi ValerieG
Apologies for not getting back to you (and your posts also got missed by others too - all conversations are public and can be answered by anyone on the forum even if it sounds like a convo betwee two people!) - I'm a bit sporadic on the forum and can never remember which posts I have commented on and maybe only look at a few when I visit....
Some would say that you should actually stabilise your thyroid function first as this can affect how your body responds to oestrogen - after all it (thyroid) is responsible for basic metabolic functions. Also many docs do not go by oestrogen levels but more on symptoms - so an oestrogen level is deemed sufficient if it is controlling your flushes and sweats - although there is an approximate minimum absolute level needed to help prevent osteoporosis - but from what I recall that isn't very high.
Your sweats could be caused by adverse thyroid function and also if you are peri-menopausal it is also difficult sometimes to work out what's what, and certainly oestrogen levels will vary greatly during peri-menopause depending where you are in the cycle. Ovulation is not necessarily suppressed with the coil.
In terms of splitting the dose - there has been discussion on another thread about this recently. It could be your night time sweats are not due to the estradiol levels falling but other factors eg thyroid or even your body adjusting to the coil. However you could try 50-50 split. It won't do any harm is the main thing. If this doesnt work then try increasing the dose if your doc is agreeable to your tweaking it in this way - but I would look at thyroid function though and not wait to sort this out.
Do start a new thread on the thyroid problem if you haven't done so already and you may get more responses.
Hurdity x
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Hirdity,
Thank you so much for the detailed response! I am peri menopausal, but I do not ever get high estrogen levels ever - mine are fluctuate between 60pmol and 550pmol at the highest. I will start the thyroid thread for sure. Do you or anybody else know if Sandrena or Estrogel provides more even levels? And also if I will try to increase, the dose, do I just add a whole pump in case of Estrogel, is not it too much of a jump? How do you splut pumps?
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Hello Everybody, I am posting an update as I have an unexpected resolution to my issues and I hope it may help others with similar issues. So it was not the Jaydess/Skyla that made me swell and have a restless leg at night. It was actually Estrogel and Sandrena/ Divigel. Let me explain what happened. I was using Divigel before getting Jaydess, but only 0.75mg a day and it was fine. Once I had Jaydess fitted, this dose of Divigel was not enough anymore as I started to hot flash like crazy. This was expected and I doubled the Divigel and swelling and restless leg started. I did not contribute it to increase in Divigel dose as Jadydess was the new medication, not the Divigel. Then I switched to Estrogel, then patch, but my symptoms would not go away. As a last resort, I switched to custom compounded Estradiol cream in Versabase base. In 2 days restless leg was gone, in a week I lost all water weight and started to feel normal. Since the switch I have been feeling good and do not have any nasty side effects. I am also using some topical testosterone that I started a yeat ago. I still have some minor night sweats so I should probably raise the dose of the Estradiol cream a bit. I am currently using 2.5mg a day and my Estradiol level is 139pmol/L.
Thank you for the help and support!
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Hi Valerie
Did you go to a compounding pharmacy for your oestrogen?
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Yes, I did go to compounding pharmacy. It is Estradiol in Versabase cream base.