Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: abbyH on March 07, 2017, 04:41:44 PM
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My dad has offered to pay for me to see someone privately - and I know I'm being seen in Panay's clinic in April (but not by him( but this is an NHS appointment that will last all of 20 mins..
who would you see if you could?
London or Surrey would be fine...or anywhere really!
I just want to get some specialised help and not be sent away for six months to flail around on my own again... I'm pretty sure I've got insulin resistance or something as well as a low functioning thyroid.. I would like a full picture and some HRT options not just told to take a 75/100mg patch and left to feel awful for six months (as has happened to me)
Suggestions gratefully accepted
Abby xx
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I personally was very impressed with Dr Anne Henderson London / or Kent.
Got an hour with her , and she is extremely thorough .....she however is business like which doesn't bother me , but some ladies prefer a more softer approach possibly , my GP was very impressed with her letter she sent her.
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Thank you!
I'll put her on my list....
Abby x
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Ahhhh, when I told Mr Panay that I'd gained nearly 2 stone he said you are probably insulin resistant and told me to get some Inofolic.
To be fair I haven't taken it yet ... been eating healthily and going to the gym which has stopped the weight gain (but not taken it off yet). Worth a try - you can buy online, it's a supplement so no prescription required.
I'm also under Mr Panay's clinic, but again on the NHS. I sympathise with the short appointments and being a bit rushed. I'm still not sure there isn't more support we can get at our GP's / local menopause clinics.
With the insulin resistance and thyroid concern, can't you get a full blood screen from your GP? Just because you're menopausal and many things are linked doesn't mean that you can only ever see a menopause specialist for everything!
Prof Studd is apparently rated but I have no experience and not sure he's even consulting anymore?
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Thank you, that is so helpful YES I have now begun to think I am insulin resistant. I've had all the blood tests and my GP has not said or recommended ANYTHING.. even though my last blood test it said basically pre-diabetes!
Honestly, I've lost years of my life feeling like this and gaining weight steadily without eating more etc etc.. the usual story..
I'm so relieved in a way that I'm not the only one going through this...
I'll see Panay's team again in April and my Dad has offered for me to see someone privately, yes thought about Studd
There's a clinic in Surrey and a Miss Whitcroft, that looks promising as Insulin Resistance is her thing
Thank you so much xx
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Just to clarify. My doc refuses to acknolewdge I have a thyroid problem, even though I have thryoid antibodies (low) and low T4
I've self medicated the past few years to feel better.. but am still at my heaviest (10 stone up from 8.9 in 2013)
the way my body has changed shape in the past few months (fat sitting around the middle) is the most upsetting..
:( :(
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My friend drops into and out of diabetes due to extremely hot/humid weather ...... she now recognises the signs so her Consultant can give her appropriate insulin.
My apron dropped a few years ago >:( ...... lack of oestrogen = laxity of muscles! Bugga ......
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I see Miss Whitcroft in Guildford, Surrey and she has really helped me.
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Ju Ju, I've checked her out.. Can I PM you about costs etc?
Thank you!
xx
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Hi abbyH
May I ask, how do you know you won't see Nick at his clinic, were you told that? Are you going to Chelsea and Westminster? He does have a private clinic on Harley Street too, and a private appointment would give you a little more time which is much more reassuring, but you might also be able to then link his treatment recommendations back to his clinic at the Chelsea and Westminster which could save you cash in the long term.
Before you start searching and paying privately, do check whether you'll possibly see him and maybe even ring and say that the referral was to him specifically and request that you see him. He has a small team, all very knowledgeable specialists, and will send you off for all the necessary tests etc within the hospital. Just thinking that it might be confusing seeing different specialists and April is just round the corner.
Good luck to you! x
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Hi AbbyH
Firstly if I had a chance to see Nick Panay I would see him like a shot! I don't know anything about his team but presumably they work to the same principles? I saw Annie Evans (only about testosterone) but unfortunately she has retired - and she was an endocrinologist too.
Also - if you have "pre-diabetes" range - presumably that was with the HbA1c test that measures average blood sugar over the last 3 months? If this is due to insulin resistance and you are not diabetic this can be controlled/reduced I gather in most (?) cases through dietary changes alone ie reducing/eliminating sugar from your diet ( except low amounts of fruit) and also reducing carbs - and making sure any you do eat are slow release ie low GI.
Re the thyroid - I am not au fait with all the different scenarios and what they mean - but if you have antibodies and low T4 - does this mean your thyroid function is impaired? If you have gained weight without trying and without changing what you do then surely this points to an endocrinal cause? Are you not able to insist on a referral? I can imagine how frustrating this must be for you.
I think it's a good idea to go to the Panay clinic as planned but if you get nowhere with your own doc maybe ask there for the best way to go about a full endocrine screening - if you have access to the funds - but surely you should also be treated on the NHS!
I do hope you manage to get treated soon so that you feel better!
Hurdity x
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Ju Ju, I've checked her out.. Can I PM you about costs etc?
Thank you!
xx
Of course!
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Hi Abby,
Someone recommended Ms Whitcroft to me a while back and I enquired about costs I was told by her secretary, 'Miss Whitcroft's fee for a new consultation is £225.00 but if any tests arise as a result of the consultation i.e. smears, swabs, scans,s bloods, would be charged as extra.'
Hope that helps.
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hi Everyone, thanks for your comments.
I did indeed ask to be referred to see Dr Panay but was seen by the nurse specialist claire instead, who I wasn't that impressed with and who just packed me off with a higher dosage patch and asked me to come back in 6 months!
I would love to see him, so will phone and ask that that happen..
My thyroid is definitely out of wack - adn I have asked repeatedy for a referral but nothing.. I can but insist again
I'm on the low carb and low GI thing already.. and am still putting on weight! its' ridiculous.. I suspect it's all interconnected now, the low thyroid, the insulin pre diabtes and lack of HRT
I will keep trying
Thank you all xx
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I am a patient of Professor John Studd (London) and would highly recommend him. I had been on the wrong type of HRT at the wrong dose for years and it was only after my consultation with him that I finally got breakthrough. He does offer telephone consultations if that helps.
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Kathy Abernathy at the Coombe Clinic in New Malden :D
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Hi Mary, can I ask how he decided what HRT? I'm under Panay but don't feel like I'm sorted with hrt (in fact I'm sure I was more balanced last year when I was just on the 2mg pill). I'm a bit despairing of ever getting sorted if I'm honest and whilst I don't really want to go private if I thought they'd get it right so that I felt good all the time I would.
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LJB12, Professor Studd favours HRT regimes with low progesterone and because I am severely intolerant to all types of progesterone used in HRT preparations, he prescribed 3 pumps of Oestrogel every day, testosterone every day, 100mg Utrogestan for 7 days each month (vaginally) but I have regular scans and take less than that because even that low dose is too much for me. I had previously been on patches and oral HRT and neither of them worked but I find the gel brilliant. Everyone is different so it is best to discuss your individual needs with him.
He often prescribes Tibolone and sometimes Oestrogel with a Miena coil for women who can tolerate progesterone.
I hope that helps.
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I'm seeing Miss Whitcroft at Surrey Park next week!
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Will you let us know how you get on?
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I would def stay with Dr Panay, and would ring the clinic you are already referred to and state you would like to see him and prepared to pay privately thereafter for any further tests or treatment as required. This should be enough to ensure you get to see the man himself, as obviously if its an NHS clinic he must see some patients .
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Years ago in the NHS the Consultant would see all new patients referred from the GP and decide on what tests etc. were required, after which the SHOs would see them at follow-up.
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Yes, I'd love to see him, or a consultant.. I will keep the appointment in April and ring them next week to make sure I can see a consultant.. I felt a bit robbed after I saw the nurse practitioner she was fine, but I didn't feel helped in any way.. the tests weren't followed up on, nothing was discussed, they even 'forgot' to measure my oestrodial levels!
I'm going to the clinic on Tuesday to get a second opinion - can't hurt..
Thanks everyone!
Abby xx
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Good luck with your new appointment abbyH, but as I said before do ring and pester. I'm presuming you saw Claire Bellone? She is usually really switched on so I'm sad to hear of your experience. I don't know how it's established which patients Nick sees, but I know that if you politely insist on seeing him it's possible.
When you arrive at reception, again repeat that you wish to see Nick. Politely but insistently! ;)
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Yes, Claire was fine.. but I did want to see a consultant at least for the first appointment!
I understand the clinic is probably overstretched too : (
Abby xx
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My friend is really impressed with Surrey Park - no idea who she saw but she has settled well into her HRT regime after a thorough assessment.
Good luck :)
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Just out of interest, those who have seen Panay's team. Do they send the results of your tests (I had a DEXA and full bloods) to your doc? Do they follow up with more tests at the 6 month point? I had to request the results for mine and they were sent in the smallest type possible and some of them I couldn't read.. The DEXA results were not sent :(
Abby xx
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Ring Dr Panay's Office on Monday and ask :-\
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All details on my private and NHS consultations over the years, including test results, have always been sent to my GPs. As CLKD says though Abby, give the clinic a buzz if your GP doesn't have them. x
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Caroline Marfleet NHS and private in Colchester. She is wonderful so kind. I contacted her when I had issues with my GP. She spent 12 months sorting him out! My GP has never done a referral she has just taken me under her wing and become my Consultant.
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Ok, will do.. I'll ring the hospital tomorrow.. it seems a bit weird to do them and not send or report on them!
Abby xx
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I saw Miss Whitcroft. She was brilliant! After reading all my symptoms and listening to my sorry tale,she diagnosed me with insulin resistance immediately and has prescribed me Metaformin and something else, low carb diet (which I'm on now anyway) advised I resume HRT evorel 50 plus progynova (eatradiol valerate) ... and then tostran in a month, she wrote me the prescription for toatran...:-)
I feel so relieved, and yes everything I've read about insulin resistance and all my symptoms ( and my mums too) make perfect sense..
I'll report back after I've settled on this regime, she was great and says now at end of a phone plus the clinic will do all prescriptions
I feel more hopeful than I have for ages, she also said Tibolone would not have been good for me..
Thank you for recommending her, she's very good!...
(And thanks to dad for paying )
Abby
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Well done Abby, I bet you're relieved. It's good to be heard isn't it?!
Hopefully you'll be feeling much better really soon.
All good wishes x
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It makes a difference to be listened too! Well done Dad for putting up the money :medal: and do let us know how you get on.
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It certainly does! and prescribed a regime that feels right - the 50mg patch twice a week is do-able for me - unlike the 75 or 100 one and hopefully the metaformin/diet/glucaby regime will work too!
I feel so positive now - she's a gem!
Thank you thank you (bank of Dad ;D ;D ;D)
Abby xx
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It's good that Dad is prepared to help you, so many parents hang onto their monies and the family ends up with Inheritance Tax bills!
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I think he could tell how desperate I have been... :'( :'(
Hopefully if this regime works, my GP will prescribe the metaformin etc... have to pay for now, but that's ok ditto the Tostran but she's prescribed it which is awesome!
Abby xx
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:bighug:
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Aw I'm really pleased for you Abby
Now you're going to be on metformin watch your B12 levels, I think it inhibits the absorption x
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Ok, will do.. was going to order some B12 lozenges.. (to add to my pile of supplements)
Axx
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Hmmmmm I wouldn't because a) they'll give you a false level if it's ever tested and b) in time you'll probably not absorb them anyway
Wait it out whilst on metformin and learn signs to look for and if you feel you might be deficient see your gp, you may need b12 injections x
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I wouldn't add anything to the mix for at last 4 months ;-)
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ok. noted ... xx
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Well done abbyH, I'm glad you got through in the end. Please keep us posted on how your new regime is going.
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I'm delighted all went well, Abby. Yes, Miss Whitcroft is lovely and has really helped me. I'm lucky that my GP who recommended her implements all changes of prescription, which I get on the NHS, without question. As I am over 60, my prescriptions are free. I did have to pay for testosterone treatment as that was not available on the NHS at the time, but sadly for me it didn't make much impression on my symptoms, but estrogen did. I shall be going to see her for a routine appointment next month.
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I will. I have every faith in Feeling better v soon
Abby xx
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Hi abbyH
Great news that you have been listened to and are now embarking on a different course of treatment - I do hope it works for you after all you've been through!
I am interested to know why the consultant thought Tibolone would not have been good for you - only in that there was much discussion earlier about women in your position (without uterus) wanting to take it and sometimes being refused by the gynae. Would it be due to the inadequate oestrogen dose?
How much T did she say to apply? Just to point out in case you didn't know that Tostran is twice as concentrated as the other two T preparations (Testogel or Testim) so something to bear in mind when women are talking about pea-sized blobs etc. Your equivalent would be half a pea - if one can be that precise.
Anyway really interested to hear how you get on - including the weight issue too because I know this has been a real problem for you.
Did she have anything to say about thyroid as well and are you still taking the Armour (or whatever it was)?
Hope you don't mind the questions but we have had discussions over the months and I have followed your story too.
All the best :)
Hurdity xx
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HI Hurdity, happy to share
Re Tostran, she prescribed 1 or two 'pumps' but unti I get the prescription I can't really tell. Been advised to take the Oestrogen part for a month and then add T
She wasn't that interested in the Thyroid stuff, and we didnt' discuss - she was really focussed on the Insulin resistance adn how I can manage that - and from there the hormones be better dealt with and absorbed
She thought Tibolone would not work for me, because of the insulin and androgentic properties and she would like me to be more oestrogenised! if that makes sense
I do feel in good hands and will trust her to help me. I know the protocol might be slightly different to the Panay team, but I felt listened to and heard and will hopefully (with the metaformin and glucoby) feel better and more able to tolerate HRT
I'll keep you updated!
Abby xx
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Thanks for letting me know AbbyH :)
When you get the Tostran prescription I would double check the dose as 2 pumps would be quite a lot I think, although there seems to be quite a lot of difference in how much T women are prescribed by specialists....
Hurdity x
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Abby I got prescribed Testim then on one prescription OH collected they gave me Tostran, I really reduced the dose and I definitely felt better on that than the Testim
It's so crazy how we all react differently because I really feel Tibolone gives me the amount of testosterone effects I need (well apart from still not initiating sex but the response side I can't grumble at) x
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I go to the London Hormone Clinic and see Dr Toledano http://londonhormoneclinic.com/ Good so far.
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I'm picking up the Tostran tomorrow (wont' take it until next month) i think I'll just start with a pea size blob as everyone else and see how I feel
xx
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Bounced for new Member asking the same question
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Abby I got prescribed Testim then on one prescription OH collected they gave me Tostran, I really reduced the dose and I definitely felt better on that than the Testim
That's interesting Annie. I've been using Testim for 4 months now and haven't noticed any difference. Maybe I'll ask to try Testogel. .. ;)
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*Tostran* doh...
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Lol I wondered why you said testogel
Yes Tostran is more potent so I reduced the size of the blob and definitely noticed a positive difference x
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HI Annie, that's good to know thank you..
I know it's probably all in my mind, but since I saw Miss Whitcroft I do feel so much better!
I've been on the 50mg patch again - no problem and adding the 1mg tablet so my oestrogen levels are obviously increasing
I just feel like there is light at the end of tunnel and particularly with my diet/insulin resistence thingy
so, onward and upward.. it just takes one person to listen and to work with you and want to help that really makes the difference. If I had my time again I'd definitely train in all this and become a hormone doctor!
xx
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Abby pleased you're feeling better! Are you still going to the Panay clinic?
I seem to be settling well on the 75mcg patches. Claire said I could try estrogel, which I suggested because it'd be easier to tweak the dose to suit. However, I'm changing patch every other day (to prevent peaks and troughs) and feeling really balanced, although I've woken up really hot a couple of times, but not affected me so far and generally feeling good. I'm now thinking gel could be non ideal since I might get more variation from it.
Any thoughts?
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I will go to the Panay clinic In April, just to see what they say!
I think gel might work better if you are changing the patch every other day..you might to do about 3 pumps a day I think to get the right amount for you but give it a go and see what happens?
Abby
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Hey Abby, have you been to the Panay clinic yet? How was it?