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Author Topic: Seeing a specialist - worth it?  (Read 3807 times)

Urbanchick

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Seeing a specialist - worth it?
« on: October 29, 2016, 10:51:51 AM »

I have recently halved my progynova tablets so am on the lowest dose of oestrogen [had hysterectomy 16 years ago but kept ovaries].    I have only been on HRT for three years and during that time I had a six month break and also tried citalopram aswell [which was a disaster].    GP suggested I come off [am 56] and to start with the half dose was OK for about six weeks.    However, flushes are back at night worse than ever before.   Am waking in the early hours and having rush of adrenaline, followed by hot flushes.   Also have weird feeling/pain on left side under ribs which might be trapped wind - GP has given me lansoprazole which I started yesterday.

Am very prone to health anxiety and worst part of menopause has been catastrophisation of every little health niggle - so this current pain on left side may well be anxiety related.   But the flushes seem to be making everything worse, as does the adrenaline issue.

Long story - but am wondering if I should bite the bullet and see a specialist?   My GP is lovely but a bit clueless about HRT - I could ask for a referral to the Nottm Menopause centre, or I can afford to go privately.   Any thoughts/suggestions?
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Mary G

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Re: Seeing a specialist - worth it?
« Reply #1 on: October 29, 2016, 12:03:58 PM »

Urbanchick, I would have no hesitation in seeking advice privately if you can afford it.  It's about freedom of choice and if you can benefit from a private consultation and get a more personalised service that changes your life then why not do it?

It sounds as though your menopause treatment todate has been pants and mostly about treating various symptoms but not the root cause i.e. oestrogen deprivation and possibly testosterone too. 

You should be a fairly straightforward case because you have had a hysterectomy and don't need the dreaded progesterone.

You could wait for an appointment at the place in Nottingham on the NHS but why wait if you don't have to and you can afford to go privately? 

Professor Studd does telephone consultations but I am sure other menopause specialists also have a similar service.  You will need to have blood tests beforehand and send them in advance by email. 

One other point... the thing that really cracked it for me and finally gave me a much needed breakthrough was the flexibility of the HRT regime that Professor Studd provided.  I could have got exactly the same medication on the NHS (mind you, not at my surgery!) but not at the same dose and that is they key to success, getting the dose right. 

It was a complete game changer for me and worth every penny to seek help privately.
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Ju Ju

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Re: Seeing a specialist - worth it?
« Reply #2 on: October 29, 2016, 12:47:44 PM »

Best thing I ever did was seek help privately. My gynaecologist was recommended by my GP, who I have respect for. She rated this gynaecologist, with whom she had worked for as a registrar a few years before. You need to do your homework though. I did consult another gynaecologist before, who happily took my money only to tell me I was too old for HRT. She told me to go back to my GP to discuss my having CFS. My gynaecologist says I can take oestrogen forever, so long as there are no contraindications. She sends a report to my GP and I am able to get NHS prescriptions. My prescription is tailored to my symptoms and needs. An appointment is not cheap, but after the first two initial appointments, I need only go annually unless I have any problems. I can contact her through her secretary either email or phone and was able to have a telephone consultation when it was necessary. There was a fee for that, but it saved a three hour round trip. I would recommend my gynaecologist to you, but it's a long way from Nottingham.
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Elizabethrose

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Re: Seeing a specialist - worth it?
« Reply #3 on: October 29, 2016, 12:51:24 PM »

Hi Urbanchick

I'm sorry you're feeling so grim. I can't advise on HRT or ADs but wonder whether I could make a suggestion re the night time adrenaline surges. I have suffered with night sweats for many years, off and on, and these have always manifested themselves with what I think is some sort of adrenal surge that causes complete sudden wakefulness followed minutes later by the flush. I don't feel anxious like the adrenal flight or fight rush, just absolutely wide awake. So awake I'd prefer to just get up, though I can't as this happens several times a night. I can be left wide awake for hours.

I've been trying to research this and talked to medic friends and I read somewhere that low blood sugar at night can exacerbate this surge so I decided a couple of weeks ago to eat a snack before bedtime to try to maintain my blood sugar levels overnight. I started with a small bowl of porridge but this was too heavy to go to bed on and settled on a banana, literally ten mins before bed. I have found that whilst still waking before each flush, I am not experiencing the same intense wakefulness that leaves me awake for hours, instead I can roll over and go back to sleep. I've missed this for three separate nights and the surges/wakefulness returned. Nothing that I can prove by science, though I think I will check this out when I'm home BUT if a small banana can give you a better nights sleep it's worth giving it a try to see if it works for you. A decent nights sleep helps us to better manage all the other rubbish peri and meno throws at us! Good luck x
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Urbanchick

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Re: Seeing a specialist - worth it?
« Reply #4 on: October 29, 2016, 12:58:37 PM »

Thanks for the replies so far ladies.   I think I am going to go back to the GP next week and get a referral to a specialist.

JuJu - what research can I do to make sure I get a good one?

Mary - am hoping for a game changer moment!
Elizabethrose - that makes sense about the blood sugar - I eat tea around 6.30 and am trying to lose a few pounds at the moment so haven't had large meals.   Don't really love bananas - but then again I loved red wine, chocolate, cake, caffeine and fags at one time and have given them all up in favour of peppermint tea.   So I'm sure a banana might seem like a treat!

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Dana

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Re: Seeing a specialist - worth it?
« Reply #5 on: October 29, 2016, 11:32:45 PM »

I'm curious as to why you have halved your dose (sorry I'm not familiar with your story). I assume you mean you have gone from 2mg (which is a fairly standard dose) down to 1mg.

Maybe instead of going down in dose you needed to go up if the 2mg wasn't working too well. You have the advantage of not having a uterus to worry about, so there's no need for the dreaded progesterone that bothers so many women.You can play around with your estrogen dose as much as you like.

Also, tablets don't always work that well for some women. Perhaps you would be better off trying a patch or gel as that will give you a more even dose, and it will also be a lower dose overall because it doesn't have to go through the digestive system. With patches, 25mcg would be equivalent to 1mg and 50mcg would be equivalent to 2mg. With the Estradot patches you also have the added option of going to 37.5mcg, 75mcg or 100mcg.

IMO before you start paying a lot of money to go private I would try these other options first.
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Hurdity

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Re: Seeing a specialist - worth it?
« Reply #6 on: October 30, 2016, 08:15:21 AM »

I agree with Dana - you should not need to consult a private specialist at this point. Your GP may be "a bit clueless about HRT" but if s/he is "lovely" then may be willing to listen to you and go along with your preferences? Alternatively is there another GP in the practice who has more clue? There really is nothing magic or unorthodox in not coming off HRT or changing to a different type - and Prof Studd does not have a monopoly on advising on dosage!!!!

Initially I would just go back onto the dose you were on before - if it was working for you? This really is very basic and does not need a specialist! First of all just tell your doc it's not working and you are going back to the dose you were on and ask for your old prescription! If you feel that even the previous dose was not ideal then i would consider changing to transdermal oestrogen ( patches or gel) which deliver oestrogen straight into the bloodstream. I use Estradot patches which work a treat :).

You are in such a fortunate position not to need extra progesterone so there really is very little risk from HRT and especially at your young age! Here is some info form this site about risks and benefits of hRT at different ages:
http://www.menopausematters.co.uk/balance.php

Please save your money for something else - and perhaps in the meantime (as well as going back to your previous dose) ask for a referral to the (NHS?) menopause centre you mention, if your GP is willing.

Hurdity x
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Urbanchick

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Re: Seeing a specialist - worth it?
« Reply #7 on: October 30, 2016, 08:55:36 AM »

Thanks everybody.     I suffer really badly from health anxiety, and have always worried that it is exacerbated by oestrogen.   But I think I am grasping at straws!   I have only ever been on 1mg, which pretty much stopped the hot flushes.

I have been halving the tablets for about six weeks with no obvious ill effects.    But a week ago a weird trapped wind started in my left side and my health anxiety kicked in big style.    Hot flushes returned about three weeks ago but are now prefaced by big adrenal surges.   They are starting at about 5/6 am and come in waves, leaving me by about 9am as a shivering wreck on the verge of a panic attack.

Think I will go back to the whole tablet and give it a couple of weeks.   My hips also ache badly so I have got myself into a bit of a state.    Not helped by working from home all week as I tend to obsess and get things out of perspective.
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Hurdity

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Re: Seeing a specialist - worth it?
« Reply #8 on: October 30, 2016, 09:00:56 AM »

Heavens! Half a tablet (0.5 mg) is nothing! At your age I had barely started HRT (from approx age 54)! Good for you - let us know how you get on. I also would consider changing to transdermal HRT anyway - a 50 mcg patch may well be absorbed far better than a tablet.

Hurdity x
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Urbanchick

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Re: Seeing a specialist - worth it?
« Reply #9 on: October 30, 2016, 09:08:40 AM »

Thanks - have taken full tablet today and will ask for referral to lava
 NHS clinic.    The hot flushes have left me shaky, weak and feverish this morning, hope it improves tomorrow as have early start for train journey and long day running training course.

Thanks so much for your input.
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Stillsearching

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Re: Seeing a specialist - worth it?
« Reply #10 on: October 30, 2016, 01:13:46 PM »

Hi Urbanchick

I'm sorry you're feeling so grim. I can't advise on HRT or ADs but wonder whether I could make a suggestion re the night time adrenaline surges. I have suffered with night sweats for many years, off and on, and these have always manifested themselves with what I think is some sort of adrenal surge that causes complete sudden wakefulness followed minutes later by the flush. I don't feel anxious like the adrenal flight or fight rush, just absolutely wide awake. So awake I'd prefer to just get up, though I can't as this happens several times a night. I can be left wide awake for hours.

I've been trying to research this and talked to medic friends and I read somewhere that low blood sugar at night can exacerbate this surge so I decided a couple of weeks ago to eat a snack before bedtime to try to maintain my blood sugar levels overnight. I started with a small bowl of porridge but this was too heavy to go to bed on and settled on a banana, literally ten mins before bed. I have found that whilst still waking before each flush, I am not experiencing the same intense wakefulness that leaves me awake for hours, instead I can roll over and go back to sleep. I've missed this for three separate nights and the surges/wakefulness returned. Nothing that I can prove by science, though I think I will check this out when I'm home BUT if a small banana can give you a better nights sleep it's worth giving it a try to see if it works for you. A decent nights sleep helps us to better manage all the other rubbish peri and meno throws at us! Good luck x

I'm going to try this I love bananas   ;D

Why is it that hot flushes during the day leave me exhausted and sleepy but at night they wake me up? The other night I woke up having thrown myself out of bed landing on my hands and knees. That hurt. I've no idea what I was trying to get away from.
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Hurdity

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Re: Seeing a specialist - worth it?
« Reply #11 on: October 30, 2016, 08:48:45 PM »

Thanks - have taken full tablet today and will ask for referral to lava
 NHS clinic.    The hot flushes have left me shaky, weak and feverish this morning, hope it improves tomorrow as have early start for train journey and long day running training course.

Thanks so much for your input.

Hope you feel better! Gosh I wouldn't want to run a training course/training day not feeling on top form - they are pretty stressful at the best of times, although I know when they are scheduled you have to do them! 

My job at the moment (very part-time) involves leading groups of people so I know what that's like though, when you're not feeling 100% but have to give out as if you do, with energy and enthusiasm.

Hope it goes well tomorrow! Banish any anxious thoughts and smile!  :)

Hurdity x
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Urbanchick

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Re: Seeing a specialist - worth it?
« Reply #12 on: October 30, 2016, 08:53:31 PM »

Thank you soooo much for the wonderful support.   I don't have many close friends around to bore with my meno journey, so rely on this forum a lot when times get tough.
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Dana

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Re: Seeing a specialist - worth it?
« Reply #13 on: October 30, 2016, 10:14:00 PM »

If you have halved a 1mg tablet it's no wonder things aren't going well. As Hurdity said, 0.5mg is hardly any estrogen at all. The standard dose for post-meno women seems to be about 2mg, or the equivalent in transdermal.

There is no need to be worried about taking estrogen. For most women, the benefits far outweigh any side effects, and as you don't have to worry about progesterone, you are even less likely to have any issues.

With the problems you describe I would say you should be starting at the 1mg dose and maybe increasing from there if necessary - and also trying either a patch or gel, as these tend to be more efficient.
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