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[elle]

Hello, I'd like to get a hormone imbalance blood test due to my hypermobility/suspected EDS, however most consultants/GP etc feel they are not worth doing because hormones fluctuate so much. I've had a long 4 years since menopause with chronic pain and bones subluxating due to a connective tissue disorder (GP has referred me to a geneticist for EDS screening) and would like to know whether this is down to estrogen/progesterone etc so I can make decisions about my treatment. If the test really can't tell me much due to fluctuations I'd rather not spend money on it, but if something was wildly out it may help me in my research! For others who have had this done privately, did you have to take regular tests to build up a picture and could I ask how many of them have to be done?  I'd love to hear if anyone has any thoughts or experience. I've been down many other routes of treatments, eg pain clinic, scans, ESWT, physio etc. Thanks, elle

[CLKD]

Morning.  Is this a recent referral and why has your GP waited so long !  U could ring the Dept and ask the question then form a list of your worries ready for the appt., any idea how long U will have to wait?  R U able to take a cancellation appt.?  If so tell the Dept your details, it may get you seen faster.

[elle]

Hi, thanks for the response. It's taken so long due to having to wait months for various appointments to rule out other causes. Getting a referral for EDS is almost impossible and I doubt it will actually go ahead. I suspect they will say there's no point as no treatment. I have a long list of investigations and treatments tried so far and still some more to go but it's exhausting as I'm trying to work it all out myself! It's a similar story with many women unfortunately who have hypermobility /eds pain after menopause due to ligaments becoming looser. I suspect the waiting list is months/years.  I can pay for a home blood test kit for  hormone imbalnces, but not sure how many I need to do over what time frame to get an accurate picture and can only afford so many. That's a good idea to contact the dept and tell them I can do cancellations, I will try and find out where I've been referred. Thanks  

[bombsh3ll]

I have had a lot of contact with people with EDS as I have dysautonomia (due to a brain injury in my case) however a lot of people with hypermobility syndromes develop it spontaneously.

What I do know about joint laxity is it is improved by estrogen and testosterone, and worsened by progestogens, particularly the non-androgenic ones.

This is something to consider if looking into menopause treatment.

However as you say you are 4 years from menopause there is no point testing ovarian hormones if you aren't on any treatment, as these will be close to zero. You can be confident of this without wasting your money, as testing a postmenopausal woman for ovarian hormone deficiency is like testing the woods for bear faeces.

[elle]

Thank you! I'm sorry to hear of your injury and dysautonomia, I've also heard it in association with hEDS etc so that's good to know to look out for possible sudden onset. I'm currently on continuous HRT (estrogen 100mg/progesterone 200mg) and have looked at lots of research as to which one or combination of hormones contributes to ligament laxity. Like you, I  think it's most likely progesterone that's the rogue hormone. However, some research points to high levels of estrogen being associated with increased ligament laxity, Relaxin meant I ended up with split pubis symphisis during my pregancies but there's no way to reduce that. I'd just love to know if one of them is out of whack so I can address it and reduce the pain. Years in with daily pain i'm getting fed up.Thanks for responding x

[bombsh3ll]

Then it makes more sense testing your estradiol level to check if you are absorbing it at a therapeutic level.

However there is no value in testing progesterone levels as there are no normative values for patients on progesterone within MHT, and if taken orally most of it is converted to other metabolites.

Adequate dosing can be inferred by lack of unexpected bleeding and/or a thin endometrium on pelvic ultrasound.

[elle]

Ah, that's interesting thank you. I've been bleeding almost every day for 2 years since going on HRT, currently under gynae investigation and recent scan showed hyperplasia of 6.3mm. I'm assuming from that my estrogen levels are actually too high (?)  If progesterone is the rogue hormone it seems like my only options are to reduce or stop hrt and see if pain levels return to the highs they were pre hrt, I'm not able to use a miren coil. I only take HRT because of ligament laxity pain, not other typical symptoms. I think I saw desogestrel mentioned as an alternative to progesterone but I've not done well on synthetic progesterones previously or looked into risks for me. Thanks so much for your time and the info, that's very useful.

[bombsh3ll]

A slightly thickened endometrium doesn't necessarily mean your estrogen is too high. How you feel plus a blood level if on patches are the best guide of estrogen treatment.

However you are under treated with progestogen if your lining is building up, and may be better on a synthetic progestin, or alternatively you could consider tibolone.

In terms of ovarian hormone replacement the one thing that would probably help you the most is androgen replacement.

Men have a lot less problems with hypermobility, and women with it can really improve with physiological testosterone.

Tibolone is also androgenic - it's a three in one.

Alternatively if you can't access testosterone you could take DHEA like me - I take this rather than testosterone due to both cost and the fact I'm on a combined pill.

[Bungo]

Following this with interest. Pain has been the biggest thing to hit me with menopause. A physio told me I've overly mobile, I asked if she meant just for my age but she said compared to any age and told me not to stretch as would be likely to overstretch. I never had any issues until perimenopause. So maybe I always had looser than usual connective tissue and menopause makes ligaments etc even looser so thats why now having these issues..Pains in knees, wrist..my ankles are the latest issue, can be fine and next minute the ankle gives way and I can't put any weight on it for 15 minutes or so. I do weightlifting and have straps around most of my joints for support! Interesting re testosterone..I also have spotting most days and my lining was 5mm at last scan.. Thinking of doubling my progesterone for that.
Elle, what makes you think you have hyper mobility? Are you double jointed? I'm not so that's why I was surprised at the physio's theory

[Pixie]

I have EDS. Its always the progesterone that causes issues. Even my own 5 days before a period. I can only take the everol sequi patches. If I increase the progesterone any more, I'm in a really bad way.
I couldn't tolerate the everol conti either with the same amount of progesterone as the sequi but every day.

It's common to get stiffer and unfortunately more pain with EDS as you get older. Norethisterone is supposed to be the only one that *may* be better tolerated but even a small amount past the everol sequi amount and I can't stand the intense pain.

Desogesterol is one of the worst ones for EDS apparently but your mileage may vary. I couldn't tolerate that at any dose.

[elle]

A slightly thickened endometrium doesn't necessarily mean your estrogen is too high. How you feel plus a blood level if on patches are the best guide of estrogen treatment.

However you are under treated with progestogen if your lining is building up, and may be better on a synthetic progestin, or alternatively you could consider tibolone.

In terms of ovarian hormone replacement the one thing that would probably help you the most is androgen replacement.

Men have a lot less problems with hypermobility, and women with it can really improve with physiological testosterone.

Tibolone is also androgenic - it's a three in one.

Alternatively if you can't access testosterone you could take DHEA like me - I take this rather than testosterone due to both cost and the fact I'm on a combined pill.

That's really helpful, thank you! Yes, I feel my symptoms suggest I'm being undertreated with Progesterone but I'm caught in a loop as taking it makes my ligaments so loose that my bones are subluxating and I've been in pain throughout the day for years now. I'll certainly look into Tibolone, testosterone and DHEA and discuss with my gynecologist. Though I'm guessing I may have to try some of those privately. I do remember seeing Davina talk about how testosterone had saved her life. I'm glad you've found something that worked for you, I imagine it was a long journey. Thanks again.

[elle]

Following this with interest. Pain has been the biggest thing to hit me with menopause. A physio told me I've overly mobile, I asked if she meant just for my age but she said compared to any age and told me not to stretch as would be likely to overstretch. I never had any issues until perimenopause. So maybe I always had looser than usual connective tissue and menopause makes ligaments etc even looser so thats why now having these issues..Pains in knees, wrist..my ankles are the latest issue, can be fine and next minute the ankle gives way and I can't put any weight on it for 15 minutes or so. I do weightlifting and have straps around most of my joints for support! Interesting re testosterone..I also have spotting most days and my lining was 5mm at last scan.. Thinking of doubling my progesterone for that.
Elle, what makes you think you have hyper mobility? Are you double jointed? I'm not so that's why I was surprised at the physio's theory

Hi Bungo, thanks for commenting and I empathise with the menopause pain, sorry you're having to deal with it. I've always been hypermobile but during pregnancy and menopause got hit really hard with pain because ligament laxity increases due to hormones. The ligaments that normally hold our bones in place become loose so they allow the joints to move around.  Like you I'm strapped in so I can function physically! Incase it's any use, some things I've tried with varying success are ESWT for ankles and waiting for it on my hip too. Methylfolate (see research from Tulane university on google), Physio, pain pharma and pain management clinic, opioids, orthotics and support straps. Joint pain programme focusing on strength, mobility, etc with rehabilitation specialist, I exercise a lot, slowly and in pain but movement really helps me. I do circuits most days and take protein powder and creatine hoping to build up muscles given they do all the compensating for my crappy ligaments! Do you have a Nuffield gym/centre near you? They are running a good programme, free for joint pain. You can get referral from GP or maybe even self refer.They will have details on their website. You get 12 weeks on the first part of the programme then 12 weeks to work independently, altogether it's 6 months free membership and access to all their classes free as well. Good luck with everything and if you get anywhere with testosterone let me know! x

[elle]

I have EDS. Its always the progesterone that causes issues. Even my own 5 days before a period. I can only take the everol sequi patches. If I increase the progesterone any more, I'm in a really bad way.
I couldn't tolerate the everol conti either with the same amount of progesterone as the sequi but every day.

It's common to get stiffer and unfortunately more pain with EDS as you get older. Norethisterone is supposed to be the only one that *may* be better tolerated but even a small amount past the everol sequi amount and I can't stand the intense pain.

Desogesterol is one of the worst ones for EDS apparently but your mileage may vary. I couldn't tolerate that at any dose.

Hi Pixie, thanks for sharing, that's really helpful for me to hear your experience. Sorry you're dealing with the pain of EDS. I had been thinking about trying sequi just to see if it made a difference to the pain on the days I wasn't taking progesterone. I'm not sure how happy they will be prescribing it given I have hyperplasia but I'm going to raise it with my GP/gynecologist when I next see them and discuss trying it. Do you find a difference with your pain on the days you're not taking progesterone? Thanks for the suggestions x

[Pixie]

Yes I'm more stable on the oestrogen phase. 3 days after the progesterone part kicks in and I start to notice, the second week is not good at all. Three days into oestrogen again and much better.

[elle]

Oh that's really interesting, thanks for letting me know. I'll raise it with my GP. Good luck with everything, I hope things stay as stable as possible for you x