Coming off HRT ............can we help each other?

Thank you so much for sending such a detailed reply. I have heard about bio-identicals but there doesn't seem to be so much info about them. I do take Vitamin D for mood and bone protection. The patches are driving me crazy as they catch and I worry about them coming off and not having the dose. I still have my uterus so need the progesterone, yes. Actually although I sleep because I don't have sweats, my sleep is disturbed as I worry about lying on the patch and this makes me anxious and restless. Also since being on the HRT patches I am having frequent bad dreams...has anyone else had this? i didn't have this on oral HRT tablets. They are quite bad and in one dream, I tried to scream but no sound came out...I thought......I woke my husband up and he had to reassure me everything was ok. I haven't had reoccurring bad dreams since my childhood, although I get the odd one from cheese. I find this whole menopause thing exhausting. I'm going to look into bio-identical but I'm nervous of trying something new. I may try going off HRT to see if I can stick it, but I dread the sweats etc. Thanks again for your reply, I'm pleased for you the bio-identical work.

I have heard of women having vivid dreams or nightmares while going through menopause b/c of the fluctuating hormone levels. In addition to the anxiety and restlessness you experience because of the patches getting stuck or whatever, the fact that the patches are not adhering correctly (partially come off) may contribute to further hormonal fluctations bc they are inconsistently absorbing due to the lack of adhesion...so I think it's very possible that you may be having nightmares or sleep disturbances as a result. Speaking for myself, I am much more comfortable using bioidentical hormones over synthetic ones. It's not clear to me if you've been taking progesterone in some form since you still have your uterus??? (if you've just been on estrogen I'd be asking the doctor why he/she has not prescribed progesterone to oppose the estrogen and to protect your uterus!) Progesterone can greatly help with sleep .As far as completely going off hormones and if it were me, I would be exploring a different hormone option (bioidenticals and perhaps a different brand) or even try a different route--this may make all the difference in the world for you. Have you had a bone density study yet? If there are changes in your bones (more porous), even more the reason to stay on hormones to keep your bones from developing osteoporosis. Take care and be your own best advocate! You sound like you feel SO miserable and it doesn't need to be that way.

Sorry, a double negative - I have found that any over the counter support does not work for me.

Thanks so much for your message sheryl, that is interesting about the pellets, I didn't know about them. I am nearly out of patches so will get more for now while I look into the pellets and other options.

Hi sheryl

what symptoms did you find earlier on post meno that led you to do the pellets?

I hear so many conflicting stories but think that it could be an option.

For me this menopause has been all about the super low mood, like im not able to function without estrogen I hear the hrt does nothing for mood and then other women say its what saved them. I have yet to visit the pellet for fear of it not working and im stuck with something that is making me worse which i cant afford.

But even with estrogen patch (0.5 mg climara) it still really doesnt provide the relief and i have been on it over a month now still giving it a try.. 1 1/2 yrs of trial and error and no relief.

Do the pellets have prog/estrog/testosterone or is it just the estradiol alone and you take prog separately?

Thanks for sharing

x0x

Hi Mauiblue, First, I was 'lucky' to have to have a hysterectomy and oopherectomy. I did not think I was lucky at the time, but after reading about all the problems that women that still have their uterus have, I now understand how much better it is.

I don't have to have progesterone which seems to be the most problem maker. In fact, recently my dr insisted I also have progesterone in the form of Ralovera. It is an oestrogen antagonist, and boy, did I suffer.

My gyne surgeon implanted an oestradiol straight away so I did not know what menopause symptoms were at the time. As they only lasted 9 months for me, I would start to feel some of the symptoms until I was given patches to fill in till next implant. Except another dr said I could start a new one straight away instead of waiting.

When my oestrogen supply has been interrupted (e.g. I was found to have a pituitary gland tumour (excess prolactin) 9 years after onset, and during those dreadful years, my head and face severely sweated - like pouring out. It sounds trivial but it was very debilitating, demoralising, fatiguingdepressive, smelly hair all the time (I would often stick my head under the shower in the middle of the night because I could not stand the smell), makeup difficult to apply and would run off anyway. Sweat would drip from my eyelashes. I was about to jump off a cliff. The prolactin was making my oestrogen totally ineffective. Obviously, I was having menopause symptoms but it was not recognised because I still using oestradiol. I went to a botox dr to see what she could do and she sent me to an endocrinologist instead. That was when the pituitary gland tumour was discovered. Medication for this problem reduced the prolactin and my oestradiol became effective again. Bliss!

Other times I experienced symptoms was after I had to go to patches when they stopped making the pellets. If I forgot to apply a new patch on time, a couple of hours later, a sudden wave of anxiety or depression would come over me. I was thinking "what the!" as there was no reason for it. I finally realised I had forgotten to replace the patch. That is how quick a lack of sufficient oestrogen affects me.

I know when my pellet starts to run out, I start the sweating again. Horrid - sweat dripping off my hair, styling a mess. With that comes reduced tolerance (crankiness), depression, loss of libido, dryness, etc.

The patch I use when necessary is Estraderm MX 100 (it provides a gradual absorption) which is 100 ug/day, each patch containing oestradiol 3 mg.

As explained I don't need progesterone (despite what my gp thought), and testosterone doesn't seem to be necessary and I never hear of any female here being prescribed it. I don't think the oestradiol pellet would cause you any problems and if you really thought it was, it is only a few millimetres under the skin - you can feel it - and your gp could remove it. It is more likely to be your progesterone dose that would cause you problems. Start low with the progesterone.

Prof Farook Al-Azzawi of University Hospitals of Leicester NHS Trust reports that there is no true optimal levels of oestradiol - 'levels of up to 1200pmol/l are sometimes required to maintain symptom free state. As to progesterone, levels are generally not helpful but if the withdrawal bleeding occurs at the end of the progesterone phase without intermenstrual bleeding and in the absence of adverse effect then the dose is adequate for endometrial protection.' (I have no experience in this so I am not sure what he means, but it sounds like a little is adequate). "Adequate oestrogen levels preceed the introduction of testosterone. "

His report about oestradiol suits me, and you might want to google this Dr to get more info regarding the progesterone if you want more confirmation.

I hope this helps.

Sheryl,

Why would your GP think you needed progesterone when your uterus was removed? A menopausal intact uterus is the ONLY reason progesterone would be needed in order to oppose the estrogen effects on the endometrial lining. I had my ovaries removed (had a mass) but still have my uterus. I woldn't let the doctor remove my uterus because it supports the pelvic floor along with the ligaments that hold the uterus up. You mentioned that you never heard of a woman being prescribed testosterone but I'm on testosterone because of very low testosterone levels, no libido and a recent diagnosis of osteoporosis (testosterone too, is important for bone health, even in women).

The first reason I was put on progesterone was because I had had very bad endometriosis right up to my diaphragm which was removed when I had a hysterectomy. Medical studies report that oestrogen support encourages any small bits left behind to grow again.

However, my 2nd gp upped the dose with the belief that hormones had to be 'balanced' and 'fix' oestrogen dominance. Reluctantly I gave it a try but it reduced the effectiveness of my oestrogen giving me menopause symptoms again. When I went back to her, I produced medical reports that revealed that. Obviously she was getting natural menopause mixed up with surgical menopause. Drs are so scared about having high oestrogen because of the myths surrounding it. I found a medical study wherein a research gynecologist reported that surgical menopause requires whatever amount to suppress menopause symptoms. I have to keep reminding her of that as her learning is still fixated. Sometimes she is good, then other times she defaults.

Not in Australia does it seem that women are prescribed testosterone for libido, etc. I find that when my oestrogen is sufficient, my libido is high. Sufficient oestrogen protects bone health. We are also advised to take calcium, Vit D and other bone and muscle mineral supplements. From these posts, testosterone support seems common in the UK. In fact I have taken an anti-androgen for many years (from pre hysterectomy) because for me the naturally occurring androgen hormones caused serious acne, greasy scalp and hairloss on head (male pattern), hair growth on face, deep voice, anger, etc. Hormone blood tests that I have had since, do not ever include testosterone. Out of curiosity, I will have to ask my gp if she prescribes testosterone to other patients.

It is interesting that in Australia, male body builders can only get testosterone illegally and if they try to import it by ordering online, Customs Officers generally find it. Fairly recently it requires an Urologist's permission for men to be given testosterone for medical reasons. My husband is one of them. He has an injection every 3 months. After having chemo and radium therapy as treatment for Hodgkin's Lymphoma, plus Haemochromatosis which is a hormone thief, he started growing boobs, and his testosterone was found to be extremely low.

I guess that means that Australian health authorities consider bad for us unless absolutely necessary for health reasons.

I have been on oestradiol for 28 years, and just in the last few months I have been suffering from bloating - it seemed to sneak up on me and the clincher came when I saw a photo someone took of me and I looked 8 months pregnant!

For me it would not be oestradiol causing it (taking into account the length of time I have been on HRT), although my good run was terribly upset when my gp insisted I take Provera too. After a while I worked out it was that which was making my oestrogen to be ineffective. But that should have been out of my system now.

The bloating I am told is all excess gas, so I am currently looking for remedies. OTC stuff just does not work effectively enough so I googled for prescription strength which lead me to a packet of Motillium which had been given to me by a pharmacist in Singapore airport after I started vomiting and nausea after a flight (airline food?). On the box it also states that it works on the stomach to relieve a sense of fullness, abdominal distension, stomach pain, bloating, belching, heartburn and nausea. So I am at the end of day 2 now (it is hard to remember to take a tablet 1/2 hour before meals) and I have noticed some reduction of the distension. According to a google search, It improves the motility (movement) of food out of the stomach and through the intestines, taking the small bubbles of gas with it and forming a larger bubble which is easier to expel.

It is only available by prescription in Australia and I have not been to my dr since before I started trying the Motilium. Disappointingly, I think it says somewhere that it should only be used on a short term basis (like 2 weeks).

The mystery is what is causing it. I have not changed my diet although I did try to add more raw vegetables to my lunch time salad at one time which did cause excruciatingly painful gas accumulation, so I quickly stopped that. I have long ago eliminated sugars, starchy carbs, e.g. potatoes, pasta, rice, pastries, grains, etc. from my diet (well, I cheat a bit when I share cheese cake with my husband when we have coffee out), I don't eat dairy except for Greek yoghurt which is supposed to be good for us, and some cheese which I have eaten after dinner for years. When I check what I should not eat (gas forming foods), there is not much left which is ridiculous because we need those vitamins and anti-oxidents and they also feed the good bacteria in our gut. I have always eaten meat. I have tried a digestive in tablet form with no relief.

I take a course of probiotics now and then, but maybe my gut flora has changed in some way to cause this. Perhaps I have to take pre-biotics. Maybe I should take a deworming tablet!

So, long story short, I don't think stopping oestrogen support or waiting for it to go away by itself will work. There are heaps of tips on the internet which would be trial and error to find what works for you/me.

Maybe there is a forum on this website which is for this particular issue.

Sheryl,

Sorry to hear you are suffering from bloating as well. Thanks for mentioning Motilium. I had not heard of that and will check it out.

I was on estrogen as well as progesterone, and according to my Ob-Gyn, the progesterone is the thing that causes bloating.

But now that I'm off of both, I have no idea what's causing it.

My only other theory was that switching from Calcium Carbonate to Calcium Citrate caused the problem, but I went off all calcium supplements soon after the bloating started, months ago, and I still have the problem.

Jeannecatlover, both estrogen and progesterone can cause bloating, is my understanding. If either are out of balance with each other, bloating will result. I started having issues with bloating and weight gain after 7 months on bioidentical HRT. My diet and activity levels have always been healthy and there were no changes in these areas that would be the cause of the bloating and weight gain. The weight gain is causing fat to deposit on my abdomen and thighs--my abdomen is normally pretty flat (not anymore:( I've continued to steadily gain weight even after adding boxing and race-rowing to my routine and these workouts are robust. My conclusion is that it is the hormones that are causing this, yet my doctor insists that it's NOT the hormones ! How can this be? I used to have miserable PMS and would bloat and gain weight around the middle and thighs and then would slim down again after my period started. Although I've gained some benefits from being on HRT (and hopefully its strengthening my bones once again), I find the bloating and weight gain unacceptable (and horrifying) and my doctor seems a bit too apathetic about these disturbing changes and has offered no options to what I'm taking. I asked if I could reduce the dosages of the estrogel and progesterone but he reiterated that these were not the cause of the bloating and weight gain. I feel like I've entered the Twilight Zone!

I am now wondering if something in progesterone does upset our gut flora and my current problem is the result of my gp insisting I take progesterone for 'balance', even though it has been many months since I refused to take it anymore. I had a hysterectomy and it just was not necessary. She must have been thinking surgical menopause is the same as natural menopause.

I am going to try to investigate progesterone more.

Catbee, it has been a long time ago now for me, but when a woman is having PMS, bloating and fluid retention - isn't that when her progesterone is higher than her oestrogen?

Catbee,

I feel the same as you about the horrifying bloating. It's a horrible thing to feel this big belly where one shouldn't be. I haven't gained that much weight--only about 3 pounds--but the belly looks like I'm 5 months pregnant. My doctors don't seem to care much either. Ob-Gyn says it will go away in a few more weeks, probably, unless there's another cause . . . And my gastro shrugs and says she has no idea what's causing it . I'm hoping to get a referral to a better gastro in Boston.