Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Kathleen on April 29, 2022, 09:09:24 AM
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Hello ladies.
My experiment with reducing my HRT to two sachets daily isn't going so well unfortunately. My anxiety has been intense and constant whereas before it would last a few hours but then fade away for a while . My crying episodes have increased as well.
I decided this morning that I need to speak to my GP and hopefully be referred to the NHS consultant who first advised me to lower my dose. It is impossible to get a face to face appointment but my surgery has an Ask My GP messaging service. I worked out exactly what I wanted to say but the service is closed from today until Tuesday due to the bank holiday on Monday and high demand. I suppose I should not be surprised but just my luck to pick a time when no one is around!
I am probably also being selfish because I still have my Newson Health appointment in June but I feel so rubbish atm I wanted to speak to someone today if possible.
Oh well I have survived this far so another few days won't matter,
Thanks for reading this ladies and letting me get it off my chest, your support is much appreciated as always.
Take care.
K.
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Anxiety is so horrible and I can understand how desperate you feel to treat it immediately. Anxiety prevents us from sleeping and functioning so you are not selfish to want to speak to your GP. I am sorry you are feeling this way. I am sending you a virtual hug.
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I totally hear you Kathleen. Its so frustrating when you are trialling something new or a new dose... And noone seems to be there to help.
Rant away!!!
I've had to get myself inyo a new mindset with it too. I've been shocked at the lack of after care from my bhrt private clinic. So, I'm just trialling away on my own. I'm only on prog, and I've not gone over the max they prescribed. I just go up and down, chop my troches up etc... And try and find something to work.
No one gives a damn. That's why this forum is so invaluable. Keep reaching out to the ladies. You'll get there. Xxx
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Hello again ladies.
Thank you do much for responding.
Flossieteacake - I hate the anxiety most of all. The other day the horrible internal shaking wouldn't stop no matter what I did. It's exhausting. Thank you for the hug.
CrispyChick - I had high hopes for Newson Health and I am sure that they help many women but the actual treatment is still trial and error it seems to me. I was told a long time ago that HRT wasn't so good at treating the psychological effects of the menopause and that has certainly been the case for me. Some of my physical symptoms like muscle pain and headaches came and went before I started HRT and even when the internal shaking started I put up with it for six months hoping that it too would resolve. When however it showed no sign of abating I asked for HRT and have been fiddling with it ever since. When I remembered the advice of the NHS consultant about how too much Oestrogen can be as problematic as too little I thought I would try reducing my HRT to see if that helped.
Like you I have been left to my own devices to try and find a way to feel better. I am even wondering if I have developed a mental health problem as a result of years of being on this emotional roller-coaster . It would have been good to talk to a doctor about it all!
Sorry to go on ladies but your support is much appreciated!
Wishing you all well.
K.
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Can you recall what levels of oestrogen you felt your best at, in terms of anxiety? For me I would put up with all sorts of symptoms rather than having to cope with anxiety as I think it's the worse symptom of all.
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Hi Kathleen I’m sorry to hear that you’re suffering still. I’ve had the internal shaking and it’s awful. I used to grit my teeth to try and make it go away.
I also know what you mean about about having a mental health problems due to your situation. Many doctors said I was depressed but I argued with them that I was only depressed because I felt so ill. The recent shortages and constant hrt being on telly has brought lots of things back to me which I don’t want to think about . I was misdiagnosed for years and lost years of my life because of this. I think we live with an element of PTSD because of what we’ve been through.
I wish I had an answer for you . I think you definitely need more oestrogen ….maybe more than you’ve been prescribed . xxx
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Kathleen - i want to give you the biggest hug ever.....i know exactly how you feel. Its horrid.
Have you tried any antidepressants too? Could be a help?
Love and hugs to you my honey xxxxxxx
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I’m sorry you’re feeling like this Kathleen, I so get it. It is just sometimes it feels endless and incredibly unfair! How is this how our bodies are meant to be?! Makes no sense!! I am with Newson also and although I love my doctor there, it’s the in-between care I don’t think is up to scratch either. If this was able to all be through your GP from the start, you could call up and ask to get a call back at least within days and discuss concerns like this as while it’s part of changing doses etc it’s still very worrying and hard to cope on your own. I don’t get why we pay over £200 for half an hour and the in-between 3 or 4 months you don’t seem to be able to really get contact with them. Not as I would like anyway. I lowered my dose at my last appointment in March, which I know was needed and it’s been marvellous in the last 6 weeks but this latest Utrogestan phase I’m getting pounding fast heartbeat that’s so horrible when it happens, although it’s irregular and passes. It’s apparently a common thing but at the same time, if we get these types of heart symptoms normally it would be an emergency. So we are meant to decide ourselves, is it a heart issue or just lower estrogen or the damn Utrogestan. Why can’t we have 24/7 menopause clinics all over the country at our constant beck and call ;D well maybe that’s too much but something other than constantly freaking out on our own and getting together here to try and help each other as we panic our way through years of this!!! Argh!!! Sorry to steal your rant thread but I SO get it! Big huge hugs and if you really start to feel bad and concerned just walk into an A & E and insist they help somehow or at least rant to them. Maybe if we all started walking into our MPs offices when we can’t get help they’d damn well do something!
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Hi Kathleen,
Nothing much to add to what the other lovely ladies have said, as I’m on my knees myself. I wish I could wave a magic wand, to make you feel better instantly.
I really feel that too many of us are being left to our own devices and after care is really non existent. I mean, just because you pay in the region of £200 for a private consultation, doesn’t mean that that’s it, end of, which is what these consultants seem to think! It maddens me because how are you meant to ask questions, make HRT adjustments. Oh what a sorry state of affairs this all is. Women are so being let down right left and centre and it’s not on. We need to make a stand against all this!
Kathleen, I totally agree with ATB and maybe if you present yourself to a+e, you may get listened to?
What dose do you feel best on (put aside the bleeding) .
Thinking of you 🌺🌺🌺🌺🌺
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Hello again ladies.
Gnatty - thank you for your suggestion. I will take a look in my diaries to see what I can discover about Oestrogen levels and mood. I do recall having some lovely calm times on three sachets of gel but I still had meltdown moments and then the sore breasts and bleeding began so I had to reduce. I will look into it further though.
Dotty - I absolutely hate the internal shaking. I first read about it years ago in my meno book and it was described as a subtle sensation. It didn't start for me until four years later and three years after my last period. I couldn't believe how awful it made me feel. The feeling I get now is milder than before but still horrible, I swear that it actually makes me anxious because when it stops I am much better and calmer even though nothing else has changed.
Although I am willing to discuss ADs with my GP I think my main problem is that this meno journey makes me miserable a lot of the time lol.
Vicky81 - I do take an AD called Venlafaxine so I am not against them. I was first prescribed it in 2013 when I was also given HRT. I was told that this AD helped to reduce night sweats and I think it worked because I had a much hotter night if I forgot to take it.
ATB - I agree that aftercare is woefully inadequate. The impression we are given is that the HRT prescribed will fix everything fairly quickly and the follow up is for a bit of tweaking if necessary. it makes a good sales pitch but as you know all sorts of things can crop up within that time frame which need to be discussed,
Nas - Yep aftercare is more of an after thought! There will be more pressure on the system as patient numbers grow so this part of the service will need to be addressed sometime. I felt my best on three sachets of gel but at the same time it felt like too much even before the bleeding. Why this has to be so complicated amazes me. What about those women who have a less dramatic time? Do their Oestrogen receptors not react as intensely to falling levels? Do they have fewer receptors in the first place? There must be a reason for such a wide range of experiences.
Thanks again ladies for all your comments and ideas. Your help has been amazing and I appreciate it so much.
Wishing you all well and take care.
K.
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Hi Katherine
So sorry to read of your troubles still, me heart goes out to you.
I’m afraid it’s sometimes not just about estrogen and progesterone but the rest of the endocrine system. This I believe is the real reason why some women fail to settle on hrt.
I used to get bad internal tremors which turned into external, so much so that my Gp thought I had Parkinson’s, NOT!
So, I thought outside the box and got an online saliva/Dhea test and found that my cortisol was on the floor. Severely anxiety was one of my main symptoms. So then I set about restoring them. I was fortunate to be able to work with a naturopath who was able to help me with what supplements to take, but if this is unaffordable it is possible to do this on your own with a lot of reading.
Unfortunately this is not something your Gp or the Newson clinic will be able to help you with. They should but they don’t as they’re not taught about it, other than the extremes of Cushing’s or Addison’s.
Tremors went. Next I moved on to my thyroid which is where I am now and been taking thyroxine for last few months.
Anxiety at its worst was 9/10 now it’s 1/10 mostly.
Of course many many women do not have to do this and they will settle on hrt when given an appropriate length of time to do so. But if after a year you still can’t settle then it’s time to think outside the box.
It would be remiss of me not to share my story so that others can decide for themselves if this just might be the reason why they are still suffering.
Love to you all my fellow sisters. x
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I think MarchLove has a point and perhaps it would be worth investigating other causes of anxiety. My own experience is that it came with peri and went completely after 3 months on HRT. Whenever my oestrogen levels drop (such as from the recent change in oestrogel) I know because the anxiety returns. There are many more causes of anxiety than low oestrogen and perhaps yours is due to something else.
ATB -at our age we were supposed to have already been eaten by a sabre-toothed tiger. Once past breeding age we're expendable in evolutionary terms (perhaps in societal terms too :().
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Yes Sheila!
Marchlove such a good post! I had cortisol issues for about 5 years, alongside hypothyroidism, peri & an issue with my prolactin going very high and then down. I tested hormones regularly to try and understand and treat it. I did not find any remedy helped cortisol that much but the first perfect saliva test came before I started HRT but after I changed location and lifestyle, very quiet stress-free and also I was able to take time off work. I don’t understand any of this enough but I do know more than any GP I’ve ever seen. I don’t think that’s good enough, honestly I think a more wholistic primary healthcare service would help women especially, lead a much better healthier, happier life.
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Yes lifestyle hugely important as well. Difficult for some to achieve for many reasons.
I found acceptance helpful. That doesn’t mean not trying to improve the situation and find solutions but fighting these feelings can actually cause more stress.
When my tremors were at their worst, I actually used to make myself shake, everywhere! I’d lie on the floor and shake everything for 5, even 10 minutes invite that tiger to come get me! It worked very well as afterwards I felt so much calmer and the internal tremors went. Like a pray animal who shakes after they’ve been chased, they shake to release the adrenaline from their system and within minutes they go back to graze.
What’s difficult with cortisol is that low and high can cause anxiety. I overshot the mark initially and ended up with the same symptom, so a repeat test if this happens is worthwhile.
One physical sign of low cortisol can be low blood pressure so that’s worth watching.
Blood pressure drops overnight when our cortisol is at its lowest for sleep, so if you have low blood pressure during the day that can be a sign of low cortisol.
Also, it’s important if you do decide to test that you also get tested for Dhea. As cortisol and Dhea work in tandem. This is more important in post menopause as Dhea naturally declines over the years.
Phew, time for bed, night everyone x
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Hello again ladies.
Marchlove - thank you for your reply. I have been researching shaking exercises and I will definitely give them a try. Your experiences of cortisol and DHEA testing are also very interesting and I will see if I can arrange a blood test. Perhaps my GP can be talked into doing it. I certainly feel that my hormones are not my friends at the moment and in an ideal world an Endocrinologist might be the right person to help.
Sheila - The fact that my anxiety comes and goes in waves at random times makes me think it is hormonal but I could be wrong and that is something I want to discuss with a doctor. I already take an AD and have for years but I may do better with a different one.
ATB - A few years ago I was diagnosed with Hashimoto's Hypothyroidism after a spell of Glandular Fever. My blood work is good on my dose of 75 mcg of Levothyroxine so no further testing was ever done. As my numbers are now in the normal range I don't suppose my GP would consider more investigations.
Thanks again ladies and lots for me to think about so thank you all.
Wishing everyone well.
K.
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Kathleen- please don’t bother with the blood tests for cortisol and Dhea as they are unreliable and only pinpoint what is in your blood at that particular time. Even going to the doctor and having your blood drawn can raise cortisol!
Saliva testing over four points in the day, at home, is the most accurate way of testing and your GP won’t do this.
ATB is far more knowledgeable than me on thyroid issues so hopefully she’ll be along again.
I can recommend a good book though called ‘Stop the thyroid madness’ second addition.
Very interesting book and it covers adrenal dysfunction as well in some detail.
X
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I would recommend the same book as Marchlove, they also have a website that is excellent, by the same name.
Thyroid testing on NHS usually is just TSH. This is thyroid ‘stimulating’ hormone, a messenger only and completely useless when on thyroid meds as your thyroid is suppressed, and not that great even if you’re not. The actual active thyroid hormones should be tested, that is Free T3, and Free T4, and at the beginning reverse T3 and obviously antibodies at the start too. The Free T3 should be in the upper quarter of the range, the Free T4 should be at halfway or above. The maths to determine this, as lab ranges vary, is on the website but you want to work out using the range they give and you should be able to work out the halfway point and go from there. In range is meaningless, it’s about optimal thyroid function. But, you’ll struggle to get a GP to listen. I went private and I use Medichecks to monitor, it’s fairly cheap there to just test Free T3 & T4. The doctors that give results and feedback understand thyroid suppression on meds too so they evaluate the results and ranges properly. If you’re on T4 medication only, but can’t convert that into T3, you’re still not going to feel well so that’s why patient advocate groups are asking for T3 to be added, or NDT’s like Armour as an option on the NHS. Some GPs will prescribe NDT or synthetic T3, but not many. Most NHS labs refuse to test Free T3 so Gps are not always to blame. But it is as frustrating an area as menopause and the fact hypothyroidism mostly affects women, 90% of patients, pretty much answers why that is. They simply do not listen to us, make us wait till our TSH is super high despite ‘normal’ being 1.0, we have to be over 10 to get some treatment but even then it’s poor. I felt like death at 4.5 TSH, literally bedridden and 2 stone heavier. Privately I discovered my T3 was almost 0 and my T4 was only just in range and nowhere near half, all of my hormones were barely in range Inc cortisol across the day, estrogen & testosterone too and my prolactin was double the top of the range. I was very sick and the NHS would of just left me like that. I don’t even think they realise that you can go into a myxedema coma if you’re hypothyroid and left like that. Thankfully I had money to go private, many women do not. It’s not acceptable. What you can do if you can’t afford private tests is use your daily temperatures, Google it, because my private doc said he thinks that’s the best way to tell if you’re currently in a hypothyroid state. There are graphs and things you can use to monitor that. Personally my main official kind of sources is thyroid Uk, not the British thyroid association who are hopeless.
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Hello again ladies.
Thank you both for yet more valuable information! It's a lot to take in so I will be making plans over the weekend.
I take it that Medichecks are the people to go with so I will check out their website.
Thanks again ladies and take care.
K.
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Me again ladies.
Marchlove and ATB - A quick question ladies please. I have just ordered the Medichecks Saliva Test for Cortisol and I see that a more accurate result is achieved if HRT isn't being used. I don't really want to miss my gel for the day of the test but I suppose I could if it is strictly necessary. What do you ladies think? Would it be okay to apply my gel as normal on the day of the test?
Thank you for your help.
Wishing you both well.
K.
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That’s a difficult one.
What time of day do you apply the gel? x
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Actually I wouldn’t and don’t bother stopping hrt when doing cortisol and Dhea saliva test.
The reason being I want to know what my cortisol is doing when I am taking it not when I’m not, which is never!
Just write on the form you send back what you are taking. It’s very important to do the Dhea at the same time especially as your post, so make sure medichecks do this and if not choose another company.
As far as thyroid goes I hope ATB can help you with this as I’ve only done one test and that was before I started treatment. I think you’re supposed to not take your thyroid meds until after you do the test in the morning but hopefully ATB will confirm.
It’s all a bit daunting I’m sure so well done for thinking outside the box x
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Hello there Marchlove.
Thank you for answering my question so quickly, it is very kind of you.
The test I am doing just says Cortisol but perhaps Dhea is included? No matter if not, at least I have got the ball rolling with some tests.
I feel better for being proactive especially as I am finding my mood swings increasingly disturbing. I had a goodish morning followed by a low mood and tearful lunchtime! Goodness knows what the rest of the day will bring...
Thanks again and take care.
K.
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Yeah I would take it as normal because I want to know what my cortisol is on HRT. I take my thyroid meds early, so every test I do is after them.
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Hello there ATB
Thank you for your advice. I will do the Cortisol test on Tuesday.
I had a Thyroid test done recently by my GP which was all okay and Antigens were normal but T3 wasn't included. I will look into a Medichecks test to see what they offer.
I've had a real mood dip again this afternoon in contrast to yesterday afternoon! I just cannot work out what is happening so the more information I can gather the better.
Thanks again for your help and take care.
K.
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Well done Kathleen.
This is the lab I use and here is an example of their test report for your info.
https://www.zrtlab.com/media/1647/adrenal-stress-profile.pdf
Even thought it’s an American lab you can still us them as you freeze the saliva tests before sending. There is a uk company that you order their tests from.
My last test showed that my cortisol dipped too much at lunchtime but apart from that was ok.
My Dhea was almost non existent so I now supplement with a low dose in the morning.
Dhea is very much an age dependent thing so post menopause it’s almost certainly going to be lower.
Hope your test goes well on Tuesday x
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Kathleen- im getting the full test done on Tuesday at 11 via medichecks. If you look on their Website under female hormone tests its the £109 it checks estrogen etc and also indepth thyroid.
I paying an extra £30 to have a nurse draw the blood its really easy as they have a clinic just up the road from me. You put your postcode in and will tell you which is the nearest one. Xxxx
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No that’s not the one that does a full I depth thyroid profile, it’s more for the sex hormones and to check menopause related stuff. It only checks free T4. You want a full thyroid profile which I think they call the advanced thyroid, includes antibodies, if you want to check all of your thyroid hormones. A thyroid function if you’re on medication is the one I get regularly, it’s the Free T3 & Free T4 ( plus TSH ).
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Hello again ladies.
Thanks once more for your help and advice.
I have looked through the Medichecks website and the nearest clinic is about a twenty minute drive from me so I'm pleased about that.
I will see how things go with my Cortisol test on Tuesday and then set about arranging the blood draw tests at the clinic.
Excellent help from you ladies as always and much appreciated.
Take care all.
K.
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Hi Kathleen, I don't have time to post all my thoughts right now, but let's start with a single question: have you ever had your prolactin levels tested?
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Ah, prolactin Uptick, been reading lots about it!
Never had mine tested but just started Agnus Castus in the morning which lowers prolactin.
Sorry, question was to Kathleen. x
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I’ve had prolactin tested for past 5 years, it went so high at one point but over the years goes up and down so I think that’s stress. It’s fine now but at one point they were going to do an MRI if I got another high one.
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Hello again ladies.
I have never had a prolactin test and I don't even know what prolactin is lol.
I do feel stressed a lot of the time but I always put that down to worrying about my HRT and my wobbly emotional health.
Btw ladies I have tried to message my GP today on their Ask My GP service and it is still out of operation plus patients are being told not to contact the surgery. Looks like I will have to keep trying and hope the system is up and running again soon. Goodness knows how many other people will have the same idea so a further delay is pretty much guaranteed. Another public service overwhelmed it seems.
Take care everyone.
K.
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Oh I’m sorry, that’s frustrating and you shouldn’t have to wait to contact your GP. Prolactin is the hormone we release in pregnancy and when breastfeeding. I don’t know enough about it outside these times other than what my doctor told me about mine, which was that it can happen because of stress or in 1/5 women it’s actually a totally harmless benign tiny tumour on the pituitary- that’s why they suggested an MRI for me but it went down. It’s not a big issue from what I was told. I wondered if mine was up and down because most of my other hormones were too? Stress in general but also on my endocrine system.
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Hello ATB.
Thanks for the information.
I was super chilled through my pregnancies and breastfeeding which I did for a year for both babies so I assume my Prolactin was high at those times. I clearly have more to learn. If Prolactin is variable now it wouldn't be a surprise given the up and down nature of my other hormones!
Take care and wishing you well.
K.
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I don’t know a lot about prolactin apart from the following.
Melatonin increases prolactin which should peak in the middle of the night which them promotes REM sleep. REM sleep is very important as it’s when the brain sorts everything out and stores what information we have gathered during the day, so promoting calmness.
Prolactin levels should be lower in the morning and throughout the day.
The test for prolactin, taken I believe 9am is fairly accurate compared to some tests, although stress can increase prolactin, so the very fact of going to the Gp to give bloods could give a false reading.
Vitex agnus castus taken in the morning can lower prolactin and increase dopamine. It’s dose dependant and not quite figured this out yet.
That’s all I know.
Oh apart from Nick Panay is very keen on Vitex for PMS/PMDD I gather.
Uptick will be back when she has the time to give us more information.
X
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Hello Marchlove.
Very interesting info re Prolactin and sleep. I look forward to learning more and if Nick Panay rates Vitex then I may just get myself some!
Take care.
K.
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I have the Angus castus I think I got for that reason but wasn’t consistent.
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Hi Kathleen,
Sorry to hear you’re suffering.
Is it possible to have an AD review with a professional that will give you time to explain without feeling rushed and talk through options? Did the Venlafaxine ever totally free you of anxiety, crying, low mood etc? Changing meds after years of taking them is daunting but with professional support and time it could help.
I hope you don’t mind me asking, please don’t feel you have to answer.
Wishing you well.
Victoria.☀️
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Don’t jump into something else too quickly Kathleen.
This is just information for you to log, make a note of somewhere and slowly gather more information.
There is an answer for you and it probably is more than one thing, but you need time to process and step back to think who can really help me in this journey with the resources I have available.
You’ve had a hell of a lot of information recently outside your comfort zone, don’t underestimate that.
I admire you so much for your willingness to think outside the box, you have more courage and determination than I think you give yourself credit for.
You’re special x
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Hello again ladies.
ATB - I will look into the Angus Castus supplement but I am prepared to be disappointed lol.
Victoria V - You make a good point about the AD. I began taking it at the same time as the HRT so I never really knew if it helped or not. Maybe it never did suit me plus I understand that these drugs can also stop working over time so a review would be a good idea. Thanks for the suggestion and I don't mind you asking at all.
Marchlove - I am doing my best to feel better, as are we all and the help and support of you lovely ladies is incalculable! I will take my time, try to be sensible and keep trying!
Thanks again ladies and wishing you all well.
K.
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Hi Kathleen, sorry for the delay in responding. Prolactin can cause excessive crying. It can get high in a number of situations, but I suspect menopause isn't on the list for the usual reason, no one cares. Try asking for a test, it won't hurt and it could be the answer to your ongoing emotional problem. Sorry to be brief, too busy atm. Good luck and keep us posted.
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Kathleen - oh gosh I feel for you. The anxiety is just the absolute pits. Sometimes it can get so bad that you wonder how you are going to cope but we do us ladies. I so hope you feel better soon. It does seem to be about getting the right dose and doing that is just a nightmare of trial and error. I am coming back as a man I tell you !! Take care xx