Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Chi chi on September 01, 2015, 01:28:32 PM
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Hi ladies,
Firstly I just want to apologise as I seem to be asking the same questions over and over again :-\ I just don't understand and at the moment I feel like I'm free falling :-\
As some may know I was originally put on HRT (privately) mainly for mild depression and anxiety that just wasn't shifting despite being on 2 AD's and already trying loads of others, GP was adamant that it was nothing to do with hormones ::) hence why we went private. It was discovered that my oestrogen was on the low side and my testosterone was very very low, one of my hips was also oestioporatic ( sp )
I had been off the pill for 6 weeks prior to these tests, but had been on cerazette for approx 3 years before. I was taken off the combined pill in my mid 30's because of age and smoking, never really had any problems on the combined. I was given the mirena but could only cope with it for a year as I seemed to bleed constantly and was then on the cerazette. After approx a year on the cerazette I had a nervous breakdown, wether this had anything to do with it I don't know?
I also had PND with my first child but not so much with my 2nd??
I was put on oestrogel, testim and utrogestan (5-7 days each month) couldn't tolerate the utrogestan so haven't been using it regularly :-\ after 3 months of starting treatment I finally felt better but then it was time for my first lot of utro, I haven't really felt that good since then :-\, been on different amounts of gel, even had implants (big mistake)! At the moment I'm on 3 pumps of oestrogel, tube of testim per week but I still have the implants (estrogen and testosterone) it'll be 6 months at the end of September and I believe this is how long they last?
I feel really low, anxious, on edge, bloated and fat and feeling like nothing's working :'(
I was thinking of coming off the gels and trying something else but what?? I thought about going back on the pill, am I allowed? Can I insist even though I still smoke and am 41?? When I was on the combined pill I don't remember feeling any of this, I wasn't over the moon ecstatic but I wasn't nowhere near this low and miserable and didn't have the horrible anxiety :-\ it's all since I had the breakdown but just before I remember feeling so on edge, snappy, irritable and like I was running on empty but going at the speed of light! If that makes sense? So I'm wondering if it's all since coming off the combined pill and going into the progesterone only??
Can I ask everyone's thoughts on this and sorry if this post doesn't quite read well I'm just typing as things come to mind ???
Thank you :hug:
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I can understand you wanting to find solutions. At a time when you feel vulnerable, it's hard getting answers.
I am sure that someone will be along. Lots of ladies don't do 'well' on utrogestan phase …….
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Thanks CLKD I wish it was just the utro stage I felt rubbish on, I hardly ever take it ??? Over the last year I've probably taken it about 4 or 5 times ( usually 5-7 days each time) it just seems that things have gone downhill and the HRT isn't doing anything
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Hi Estelle - I don't know all of the in's and outs of your regime but is it right that you are taking double the amount of oestrogen if you have both implants and gel?
Also, it is really important that you take a progesterone regularly to prevent your womb lining building up which can put you at risk of endometrial cancer. Have you had any periods? Sorry if I've misunderstood.
Taz x :)
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Thanks Taz2, yes I've been having periods /bleeds. The reason I'm using the oestrogel as well as the implant is because I felt no better and my estrogen level actually halved after the implant was inserted ???
Since topping up with the gel I've had a regular bleed for the last 2 months without the utro, this month the day that I should have come on came and went so I've just finished 7 days of the utro and am now waiting for the bleed.
The specialist I see was happy for me to not take the utro each month but maybe every other month or every 3rd month
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Ah thanks for the explanation. I suppose it must be your own cycle breaking through then?
I'm sorry you are feeling so awful still. Not sure what to suggest but I'm sure others will be along soon who can come up with something more useful!
Taz x :)
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The hormones are working in that you get a bleed ……… maybe your own hormones are joining in ? how do you spend your time?
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Hi Estelle
You sound so stressed and at your wits end - sometimes you do need to stand back and try to look at things more objectively - I know from experience that when you feel really rough, objectivity goes out the window but this is the time to really take stock and focus on what you are trying to achieve.
I will try to offer some objectivity:
I think you are seeing Professor Studd? Whilst he is one of the foremost experts on treating hormonal issues, having read posts from people who are seeing him, he doesn't seem to be good at listening and responding to his patient's concerns and explaining why he is recommending the treatment he has prescribed.
You are not alone in having problems with maintaining a good level of oestrogen - I have seen a few posts on MM from women who seem to have the same problem??!! I find this baffling. To use such high levels of oestrogen and still not get a good absorption seems very strange to me. Do ask Studd to explain why you are not getting good oestrogen levels? Are you actually in peri meno?
Next time you see Studd, do write down your questions and concerns and give them to him - I find if I do this the doctors I see have to respond and it helps the appointment go more smoothly. I am seeing a gynae privately and he is very good at explaining things to me and discusses my options so I go away with a clear idea of what to expect. I have learned a lot from MM and this has helped me to ask the right questions and understand what is involved.
You may not like what I am about to say to you but I hope these suggestions may help:
It is known that smoking can effect the absorption and effectiveness of oestrogen so I do think you need to find a way to stop or at least reduce your smoking. If you need ongoing hormone treatment giving up smoking will be essential and could make a big difference to your mood and wellbeing in the long term.
What about 'e cigarettes'?
Are you still on an AD/SRRI? If not maybe you still need this alongside your hormone treatment - many women need both.
What other lifestyle changes could you do to help improve your health and general welling e.g. CBT/Mindful Meditation/yoga/diet etc. Sometimes adopting a good routine of regular meals and exercise can help enormously.
What about seeing a dietician/nutritianist who could help you find some positive strategies to improve your lifestyle? Sometimes lack of vitamin D can be the cause of fatigue and low mood!
I also think that chopping and changing hormonal treatments seems to be non productive in trying to find a solution - your body simply doesn't know where it stands. Maybe stick with the Oestrogel which is easy to control and put up with feeling a bit rough for those few days each month on Utro? You will know what to expect and maybe by getting into a good routine your body will respond better. I actually feel pretty rough when I have my bleed but I know I have to put up with it to protect my womb lining. It is unrealistic to expect to feel good every day of the month.
I hope that helps DG xxx
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HORMONES >:( ::)
Good advice DG - sometimes we put too many chemicals into our bodies and when our own hormones join in, it is too much for the body to deal with. Keeping a food/mood diary can help too.
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Is that correct a tube of testim gel a week and testosterone implant,surely that is too much ratio to estrogen for a woman :-\
But I'm not an expert it just seems very high.
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Thanks for all the replies,
I really don't think I could give up smoking at the moment, I've got loads of different e-cigs but they just don't hit the spot :-\ Proff Studd isn't very approachable, when I've questioned things in our appts he kind of skirts around the issue and basically it's "here take that and you'll feel better" he doesn't go into any real detail about why we feel like we do with hormones ::) he hasn't confirmed I'm actually in peri or not, another unanswered question ::)
I'm still on 2 AD's which prof studd said I shouldn't need but there's no way I could think about coming off them at the moment ??? Even though I'm not sure what exactly they are doing, I realise I could be worse without them but I also feel I should be better than I am.
I was deficient in Vit D and have been taking supplements since June last year, again no difference really. I still ache everywhere, daily headaches, fuzzy head, constantly going to wee, even through the night and now I keep getting water infections :-\ lately I feel very wired but tired, I normally have no problem getting to sleep but for the last few weeks it's taking me ages to drift off and then I'm awake again going to wee ::)
I've put weight on especially on my tummy and I just want to eat all the time :-\
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Is that correct a tube of testim gel a week and testosterone implant,surely that is too much ratio to estrogen for a woman :-\
But I'm not an expert it just seems very high.
This does seem too much testosterone. Were you told to discontinue the Testim once you had the implant inserted Estelle. Sometimes these things get missed.
Taz x
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I was unable to get testosterone treatment :-\
Two different Anti-depressants :-\ ………..
Your body won't know if it's flying a bike or riding a kite ;)
How's your diet?
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;D CLKD I do kinda feel like that! Diets not bad, we eat quite a bit of chicken, fish, rice, pasta and veg, I also eat quite a bit of salad too.
I did stop the testim when the implants were originally inserted, but as I wasn't feeling any better a couple of months in he said to top up with the oestrogel he said I could also start the testim again to see if that would lift my mood a bit
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We eat well too. I don't exercise enough though :-X :-\ ……… gardening is my main hobby = exercise. My brain gets plenty of activity though, planning the borders ;)
Do you think you are in general though, kind of stable? but wanting more improvement?
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Yeah I don't really do a lot of exercise although constantly running around after 4 dogs that aren't housetrained!! :o well 1 of them is Charlie our King Charles but the other 3 are chihuahuas ::)
I know I could feel a lot worse, I'm nowhere near as bad as when I had the breakdown but I know I could also feel a lot better too
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I agree a 100 test implant plus testim on top is too much. High testosterone can cause anxiety. From recollection your levels were high before the implant.
I only have a 50 test implant my last level was 2.1. I wouldnt want to be higher
High testosterone levels can cause anxiety, depression, fatigue, hypoglycemia, salt and sugar cravings, agitation and anger, facial hair and acne, insulin re
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Ditto re the testosterone - and also the two different ADs - no wonder your body doesn't know if it's coming or going as CLKD says! I'm supposed to make a tube of T last 10 days but it lasts longer than that. We are supposed to replace a physiological amount. Testing for T is difficult I gather due to the range being for men so our readings will always be at the bottom end so (the test for T) not so sensitive to small differences whereas our bodies are if you see what I mean? Have you noticed any side effects from T ie androgenous ones (male type)?
I agree with Dancinggirl re the smoking - if you do one thing to help yourself - concentrate on this - it will pay dividends re your future health.
You should not ache everywhere, have headaches and fuzzy head! How difficult that must be! Also as Taz said earlier - I am surprised about the progesterone ( not taking it some months) with such a high dose of extra oestrogen. Of course you will have a bleed every month (if you are ovulating - unless this has been suppressed?) but the progesterone from your own body may not be enough for the amount of oestrogen you're having. Still if you are seeing Prof Studd presumably he recommends a scan now and again to check your lining is OK?
Is it worth letting the implants fade away and starting again on a different regime eg Qlaira contraceptive pill (with bio-identical oestrogen) - along with a small amount of T - but maybe you wouldn't tolerate the progestogen?
Oh dear - sorry that none of us can really help you - if only you can find a regime that works!
Hurdity x
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Estelle, sorry to hear about the difficult time you are having but I can relate to it. Do you mind me asking how the Utrogestan affects you?
I went to Studd and was given the same prescription i.e. 3 pumps of gel, 7 days of Utrogestan and testosterone and no, he does not like to be asked too many questions. You obviously have the same problem with the Utrogestan that I do and it would appear you are intolerant to it. I can't stand the stuff, I can now only take two before I get a silent migraine - this consists of migraine aura for about 25 minutes but no headache. I have no idea why but there is something in artificial progesterones that does not agree with me which is very strange because I never had any problems with the pill and I never had PMT or any other problems. The artificial stuff seems to have a very long half life and stays in your system for a long time. For me, it all started when I stopped producing enough of my own oestrogen and progesterone.
When I had the first migraine, I was on the Mirena coil which contains artificial progesterone and although I did not know it at the time, I was peri menopausal. I have asked countless medics over the years why this has happened but none of them have any idea. I have had to draw my own conclusions and that is the artificial progesterones are too strong and push my oestrogen levels too low and that sets off the silent migraines. Therefore, I only take 2 Utrogestan capsules vaginally every 5 weeks (sometimes I skip it altogether) and when I start to get the migraine aura, I take an additional pump of oestrogen gel and that aborts the rest of the attack and makes it go away more quickly - the actual aura becomes milder too. Before I started the oestrogen top up, I used to get a 72 hour post drome but that has stopped now.
The bottom line is this, I feel great on the oestrogen gel but the Utrogestan ruins everything because it is too strong. Like you, I get periods whether I take the Utrogestan or not but the down side is they last for two weeks because my own progesterone levels are too low. I have started taking DHEA tablets and they have made my periods lighter so that helps. I'm afraid there is only one option for people in our position who are severely intolerant to artificial progesterone and that is to have a hysterectomy. It is not something to be entered into lightly but I sometimes wonder if it would be best in the long run.
I hope that helps.
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Hi again Estelle - as you are still so young (compared with me!) I wondered what menopausal symptoms you were experiencing before you began HRT?
Taz x
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Isn't utrogeston bio identical :-\
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As for 4 dogs not house-trained :o ………..
I would also be very concerned if I saw a Consultant either on the NHS or privately who wasn't interested in discussion. It's a bit 'my way works; take it or leave it' - I expect better from the Medical Profession! After all, they are altering our bodies without being explicit! Would you under-go surgery with such lack of info. :-\
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Hi estelle, sorry to read about your problem. I totally sympathise with you, it is an awful way to feel. I too went to prof studd as i was so desperate to feel ok again! I was given script 4 pumps of estrogel and testogel pea sized amount daily...no prog as i had a hyster. Previous to this i was on 100mcg patch which is virtually identical but mr studd seemed to ignore this.....and i dont think he wanted any questions which werent straight forward! One of my diff symptoms was headaches almost daily and these were along with mood swings, nausea, palps etc.
Cutting a long story short Prof studd's treatment was not any more beneficial to me than the 100mcg patch which i was already on. I am among the women who are extremely sensitive to any hormonal fluctuations. PMT/PND and nightmare meno..... It is all down to BALANCE and how that effects us.
It does sound Estelle that your levels are too high (wired feeling) problem is because hormones fluctuate so much in peri, its impossible to get it right! I wonder estelle if you would be better to reduce your hormones but give all time to settle. Sorry but did u say why u are using 2 diff ADs? X
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sensible advice sweettooth
Estelle - I really think you need a review of all the things you are taking. To be taking 2 different ADs plus high doses of various hormones with no real benefit seems wrong. Perhaps it's time to go back to your GP or a different gynae to get a second opinion about everything that is going on. Lifestyle changes maybe important as well.
DGx
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Thanks for all the replies :hug:
The 2 AD's I'm on are escitalopram and lamotrigine, the 2nd is more of a mood stabiliser, my GP said they work alongside each other?? I've tried most if not all AD's in the last 3/4 years with no success (this is why I thought it could be hormonal ) so I decided I wanted to go back onto the AD I was on before the breakdown then GP suggested I take the mood stabiliser too.
Sweettooth can I ask, did you stop seeing studd and go somewhere else? Did they help? and how are things now?
CLKD that is exactly what he's like! :-\
Taz2 my main symptoms were/are low mood, anxiety, no enthusiasm for anything, tired all the time, aches and pains, headaches, no libido, pains in joints, constantly needing to wee day and night, problems with my teeth and gum recession, dizziness, always feeling cold, now I'm always hot! I don't know what my periods are like as I was on the cerazette which stopped them completely but mum was my age when she started with meno symptoms.
Mary G your post is very interesting, might take me a while to get my head around it ??? Meno brain! But the aura? Can I ask how exactly it feels? Maybe that's what I call my fuzzy head??
Hurdity, no he hasn't mentioned having scans >:( I have e-mailed him saying that I'm concerned that my treatment just isn't working and have mentioned maybe trying Qlaira? Again I'm waiting for a reply from him!
It's just that I don't remember feeling any of this until they took me off the combined pill, I just want to go back and try again. I thought that being on what I'm on now was the best out there and if anything was going to help then this was so I'm wondering if that's it for me? :(
My last test showed my Testosterone was 8.5 he said he wasn't concerned by this as I'm using the gel??
My free thyroxine was also flagged as low but in the letter to my GP he said he would discuss this with me at our next appt ???
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Hello, I cannot comment on your issues because I have no experience to share about HRT, until I came to your final comment in your last post.
If your Free T4 is low this will not help how you feel. You could ask what your level actually was, (Free T4 and TSH) put the request in writing to your GP practice, they have to tell you, better still ask for a copy of the results even if they make a nominal charge for this then go and talk to your GP about it. I often go for a chat with my GP in between appointments with my endocrinologist, they work together for me.
Low thyroid and meno hormone turmoil is an awful combination to be struggling with and if one could be addressed properly it could go part way to helping with the others.
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It was 11.9 range is 12-22
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yes, borderline, but numbers do not always give a true picture and the way you feel gives a better idea. Do you feel cold, dry skin, hair loss, weight gain despite low appetite. these are some of the symptoms of low thyroid but I would advise asking your doctor to retest in 3 months time.
Otherwise it could be the general hormonal turmoil you describe and the other ladies with experience of HRT are better to help support you. Good luck.
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Thanks, I used to feel cold all the time but lately I've been feeling hot, I have put weight on but I've also had a massive appetite, my skin has felt itchy of late and my hair has gone limp and lifeless, I do lose a bit when it's washed but wouldn't say it was handfuls :-\
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Keep an eye on it, get your GPs support in this. Good luck :)
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Estelle as some others have suggested if I were you I would strip back all the hormones for a while and 're assess the situation. You really seem to be on high doses yet still feeling rubbish ! :-\
I really would be going back to basics ,clean slate and seeking a new start else where. Your poor body can't know which way is up.
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You may find too that your body has evened a bit despite all the intervention ;)
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Estelle, i had no improvement really so prof studd suggested my GP try an injection to shut down my ovaries (still had ovaries as hyster only for prolapse). I had an injection every month (approx 6) and added estrogel, i suppose this was to stop fluctuations which were causing headaches, mood swings etc., and if successful i would then have ovaries removed. Symptoms improved or so i thought! so i went for removal of ovaries. I recovered very quickly but my symptoms returned albeit not as severe. I am not blaming prof studd as i think he tried all possible.
I did not go to anyone else, it was impossible for me to find balance. For me it has been time.....fluctuating hormones settle the more we age plus our bodies require less estrogen. I was beginning to think there was light at the end of the tunnel last year using 50mcg estradot patch....improvement in headaches etc WHEN after routine mamogram, i was diagnosed with bc. I now have to take arimidex to STOP estrogen production from anywhere in the body......the very hormone i needed to stay sane! So headaches back and tearful bouts, the usual hormonal c..p. giving me full on meno but i am confident it will get there... perhaps quicker!
Sorry for long post estelle and perhaps not the most positive at times, hasnt been all bad, im still here, upbeat and hormones have made me the person i am.......the person i wouldnt change!
As i said perhaps reduce your hormones, take a good vit B complex and magnesium. The recomendation is to start with low dose of hormone, stick with that for 3 months and review with your gp or clinic, increasing if needed. Some people find accupunture a great help also.
Best wishes estelle keep us posted xx
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8.5 test is high. My chap would not be happy with that level and i have no ovaries. I would cut the testim. Out
You need to be care.with zoladex/prostap it is only a shot term measure due to the bone thinning risk and it can cause problems with blood pressure as i found out.
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Aww sweettooth you poor thing :( that must have been awful for you? How are things now?
So the injections did help? How come you had to go to your GP wouldn't studd do that procedure? I'm not sure if my GP would as he doesn't believe my problems are due to hormones ::)
I presume the injections don't shut ovaries down permanently and if nothing improves things are reversible?
Acupuncture was brilliant for me when I had sciatica, I was seeing a chiropractor which wasn't helping at all but just one session of acupuncture and it went!
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Estelle, I think you would know if you were having a migraine/silent migraine, it is very distinctive. The migraine aura that I get is called scintillating scotoma.
Basically, it starts with a blind spot then a shimmering jagged line or C shape in the middle vision field which disappears to the upper outer edge of the eye after about 25 minutes. Most people get a headache afterwards but I don't for some reason so mine are called silent or ocular migraines. I used to get 72 hours of postdrome (feeling run down) afterwards but now I immediately rub some oestrogen gel into my arm and this sort of aborts the attack.
I wonder if you are reacting badly to Utrogestan but getting different symptoms? I can well believe it would give you a fussy head.
It is horrible and I have absolutely no idea why I get it and even more worrying, not a single doctor knows either. I have had to do everything myself and work out the best way to deal with it by running several trials.
Conclusion: It only happens when I use artificial progesterone (I never had it when I was producing my own) and it would appear my body is asking for more oestrogen which is why the pump of gel aborts the attack. Artificial progesterone/bio identical progesterone is obviously far too strong (apparently more than 10 times stronger than the stuff you produce yourself) and it pushes my oestrogen levels too low which causes the attack. The one question I cannot answer is why this only kicked off in peri menopause and why the pill, which is loaded with artificial progesterone, did not affect me in this way.
Apart from that, I get on brilliantly with the gel and it would be perfect if only I didn't get this problem. The only real solution for me is to have a hysterectomy.
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I don't get a headache with mine either. I used to get classic migraines when I was younger though and I would just have to go to bed. Couldn't see to walk about or read and the pain was excrutiating. There is info here on Retinal (ocular) migraines http://www.nhs.uk/conditions/retinal-migraine/Pages/Introduction.aspx
Taz x
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Estelle i am doing well tk u, still going through meno so some days are better than others. Re injections i would not like to have been paying for them! plus i live a long way from London and yes the injections arent permanent.
St xx
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Just to add re the problem of progesterone being too strong - because the molecule is unstable we have to take a large amount in order that sufficient gets to the uterus where it is needed to oppose the oestrogen. This is why for example we have to take 200 mg on average - it breaks down very quickly. Our own ovaries of course are producing it at a constant rate all the time so unless we are very intolerant - we can cope with it. Replacing it exogenously (ie from outside our bodies) is another matter. This is why the artificial progestogens are so helpful because they can be taken in much smaller doses - because the molecules are more stable. However they can have negative effects (which some women are more sensitive to) outside the area intended ( ie the uterus)!
Hope you manage to sort something out Estelle eventually. Try not to lose heart which I know is easier said than done.
Hurdity :) x
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Thanks again for all the replies, I'm just so confused and really don't know what to do for the best :-\
I emailed Studd again today explaining that I've sent a couple of emails in the last 2 weeks (which he hasn't replied to )! Saying that I don't think things are working as I feel so low at the moment, possibility of trying Qlaira or maybe even the injection to shut my ovaries down to see if there's any improvement :-\
Again still no reply from him today >:(
Im now panicking as its my daughters first day back at school tomorrow, why I'm panicking and anxious I have no idea? :-\
Thanks again everyone :hug:
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Taz2, thanks for the link, mine affect both eyes.
Estelle, Studd doesn't always answer emails but I hope you get it sorted out.
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Thanks Mary G, he finally replied! See my other post 'here's hoping' ::)
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Glad you heard from him in the end Estelle!
Hurdity :) x
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Well kind of Hurdity ???
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DD OK in school?
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Thanks for asking CLKD, she was reasonably ok although she had a few tears when she got there apparently but managed to get through it without having to phone me :)
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Sorry Estelle- I'm getting muddled with the different threads - I do remember and I did answer on your other one!
Hurdity :) x
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Yes thank you Hurdity :)