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[ricekrispie]

I'm three years post hysterectomy with over two years of dragging myself from one day to the next and not one understanding GP to my name. Symptoms:anxiety attacks, brain fog, a total lack of concentration, no ability to prioritise, extreme fatigue, muscle weakness, muscle tremors in arms, insomnia , depression, to name a few.

I'm self employed and the only earner, I was losing thousands of pounds in earnings over those two years. GP wouldn't entertain progesterone (no uterus so you don't need it) or testosterone, even though they agreed to test for it (we won't prescribe that due to the risk of heart disease!) Something had to give.

My friend recommended Dr Jan Toledano at the Marion Gluck clinic. I took all the up to date blood tests I had on me: Thyroid, blood glucose, testosterone etc. then she did: DHEA, thyroid - did you know there are four types of thyroid test and your GP only does on and the range of normal is very wide? No, me neither, and progesterone was tested too.

Well. I hardly have any progesterone or testosterone. My DHEA is not bad for my age and only one thyroid test came back a little low so I am now on bio-identical progesterone 75mg and testosterone 0.5mg two pumps a day.

It's been three and a half weeks and I cannot begin to do it justice.

I'm walking the dog for at least an hour a day. I have muscles again! I actually power up hills now instead of dragging myself about. I've had three afternoon naps in all that time as opposed to at least three a week beforehand. My sleep is better now than since I was a child, it makes me think I was possibly always lacking in progesterone. I have so much energy, so much get up and go, my brain fog is clearing and I can work all week now. Whereas I couldn't entertain the thought of doing much at weekends I now go out, I see people, I am more social now. I am able to deal with things and I'm so much happier than I was. I find myself singing! I hope to God it continues. I'm like my old self.

What hasn't happened: No added hair! No loss of the hair on my head. No deepening voice. I did have tender boobs for a few days but that's passed and for the first week all I wanted was sugar but I've got a handle on that now too.

All in all - consultation, bloods and the first three months of cream it's cost me nigh on £800 but that's a drop in the ocean compared to what I have lost previously. Also the progesterone is apparently a far better version than the one NICE will prescribe. I can't afford it, I put it on an interest free credit card but it's been so worth it.

Tuesday I'm off to the GP with all my answers to preempt the 'deep voice, bearded lady' garbage I thoroughly expect to hear to ask that she refers me to Dr Toldedano so that I may get updated bloods and repeat prescriptions through my GP. I'm not holding my breath but you never get if you don't ask.

I've written this to say if you can, and you want to don't wait six months or a year at least to get somewhere. I think it's absolutely criminal that we have to go through all this just to have some kind of a normal life frankly it's disgusting. I only hope this post helps anyone just a little.

[Blakeygray]

Thank you. Thank you. Thank you. Your experience and reaction to taking testosterone fills me with hope. I'm having a telephone conversation with my gp tomorrow morning, who is supportive and very nice, so I'll quote you and the other women who have found taking testosterone a positive thing.

Would you mind keeping us updated on how you get on. I'd gladly max my credit card if it meant I could have my libido,  energy and fitness levels back.

Thanks again. 

[ricekrispie]

Absolutely. You go for it and don't take no for an answer, though I realise how hard that is when you feel that crappy.

I feel as if I've got my kick a**e attitude back too, something I thought was gone for good.

My libido is still in the toilet but a bit better. Before the cream I caught myself quite literally staring at beautiful men and I couldn't work out why, then one day I realised it's because I'd come to look at them the way I'd look at a great piece of art. They held nothing for me except appreciation of a chiselled feature or a lovely body, nothing else. I'm hoping that changes cos I must've looked weird, staring at men half my age.

[Keepgoing]

Great you feel so much better, your gp should be ashamed it's terrible you had to pay hopefully you will get it now on nhs as I have done. The T has made a big difference to me too and it's just under a month I've been on it xx

[Blakeygray]

I'm cutting and pasting quotes from the NICE  report of November last year and the British Menopause Society report of May this year, as we speak 

[ricekrispie]

I'm cutting and pasting quotes from the NICE  report of November last year and the British Menopause Society report of May this year, as we speak 

Great! Can I have a copy? Seeing GP Tuesday morning and just trawling the Net for heart disease in women and testosterone papers. Swap?

[ricekrispie]

Great you feel so much better, your gp should be ashamed it's terrible you had to pay hopefully you will get it now on nhs as I have done. The T has made a big difference to me too and it's just under a month I've been on it xx

Thanks, Keepgoing, I really don't expect to get anywhere but I can definitely demonstrate that I've taken responsibility for my own health these past two years. Time they took up the slack now I've done all the research.

[Maryjane]

Yes I did no re thyroid .....it's why I have paid for a private one my NHS test is " within range" but my antibodies are far from within range.

So off to see Nick Panay next week ( waited 6 months for the appointment) as want testerone also.

[Annie0710]

That's great news!

I have no womb and have dabbled with prog , I actually like it !

I'm 11/12 days on testosterone and not using full quota, can't say anything really has kicked in yet, energy burst on day 10

Are you on oestrogen ?

X

[Rhiner]

Many thanks for posting this ricekrispie. I am very interested to hear a little more about the 75mg prog. How is this prescribed, is it on a 'named patient/specials' basis and do you know why it is better than the one that  NICE  advocate, i.e.  100 and 200mg doses , apart from strength (Utrogestan)?

Keep updating on your progress and its great news.

Many thanks,
Rhiner

[Blakeygray]

I'm cutting and pasting quotes from the NICE  report of November last year and the British Menopause Society report of May this year, as we speak 

Great! Can I have a copy? Seeing GP Tuesday morning and just trawling the Net for heart disease in women and testosterone papers. Swap?

Yes I'll pm you later  if that's OK. It's only  a few lines; I've highlighted what I need to bolster my request.  I've also included quotes from Nick Pannay and Dr Channa Jayasena a clinical Senior lecturer in endocrinology.

[MIS71MUM]

If I'm reading that right, you are taking a progesterone when you don't actually have too because you've had a hysterectomy? And you're taking no Oestrogen? Wow.

I too, really enjoy a low dose of progesterone, please tell us more?

[Hurdity]

Hi ricekrispie

Well I am very pleased that you are feeling better but for the benefit of others reading this thread I feel bound to comment in general on your treatment.

I am very concerned to read about the money you have had to spend on a very unorthodox treatment. Every time I read about the Marion Gluck clinic i wonder where on earth she gets her ideas from as they are not based on research and from what I recall she is not a gynaecologist nor even an endocrinologist - but perhaps someone can put me right there?

I am also extremely concerned to read about women maxing out their debts in order to get help . The charges at the clinic are outrageous and if  you really get no joy from your GP (or a different doc) and can't get an appt with a menopause clinic nearby, if anyone is going to spend money then please go to one of the well known gynaecologists - the specialists are all listed on this site (very top menu - blue writing - specialists) and find out about their interests before making an appointment. Those who are members of the British Menopause Society would be the best ones for a start.

As has been asked - if you have had a hysterectomy, then did you keep your ovaries? If you are getting symptoms then oestrogen is the first thing you should be taking before thinking about testosterone as T on its own is not advisable as others have said.

If you have low progesterone then it means you are either in the first part of your menstrual cycle ( if you have not yet reached menopause and still have your ovaries) , or you are not ovulating at all. You do not need to replace this and especially not for fatigue - it is likely to make you more tired as it is a sedative and no gynaecologist would prescribe this for fatigue!!!!

Re the 75 mg dose of progesterone - I presume this will be by way of compounded cream and such products are unregulated so you can't tell anyway how much is absorbed. Anyway as I said you don't really need this!

re the thyroid  - yes an in depth look at thyroid issues (usually if one is referred) may result in 4 things being testsed - TSH, T3, T4 and the presence of anti-bodies. I see from my blood tests back in the 90's that T4 was tested routinely but no longer. I'd be interested in your thyroid results which one was low and what was your TSH?

Re the testosterone - again that dosage is not one of the proprietary products available and I guess it is also a specially compounded formulation for women. That is also a very low dose to be almost negligible - and depends on how it is absorbed - whether it is a cream or gel?. One tube of Testogel for example contains 50 mg and is intended to last approx 10 days (so approx 5 mg per day) although I do use less than this - maybe 3 mg. Absorption rate will have been rigorously tested though as this is a licensed product. You are using 1 mg per day - so you will be unlikely to get any androgenic side effects. Also some side effects such as this (hair growth, deeper voice) will tend to occur over a long period of time if they are going to  - several months - so longer use is needed to assess this. Maybe that very small amount is having a positive effect - but you would be better off getting it from proper gynae (NHS or private) or GP and not spending such huge amounts of money on unregulated products.


Blakeygray - we have posted the info on the NICE Guidelines and testosterone regularly on here. Re research on Testosterone and women - there is so little information out there - and so little research. As far as I know there are no long term studies on T replacement and risks and all sorts of measurable parameters. - but if you have come across some research into long term T and women, and especially trials please do post the links as there are lots of us who would like to read them.

ricekrispie - just to say again - I am so pleased you are feeling better but I would caution other women to go down the same route when there are better and cheaper ( free?) treatments out there.

Hurdity x

[Tempest]

Hi, Ricekrispie.

I too am very pleased to hear you're feeling so much better but Hurdity has beaten me to it, and much more eloquently than I could have put it I might add!

As soon as I read your post, alarm bells started ringing. Believe me, I have researched ALL options for treating my surgical menopause symptoms and The Marion Gluck Clinic was one that I researched more info. on. Hurdity is correct in that her only qualification is that of General Practitioner (she has now left General Practice) and her methods are seen as very controversial. She is also not a member of the BMA.

She seems to follow in the footsteps of another controversial gentleman in the US who is heavily into prescribing compounded Progesterone, often advocating it as the only add back hormone needed in menopause. He is even seen as controversial in the US by many, which is saying something as they have very diverse ways of treating menopause symptoms with compounded HRT there.

I'd also like to ask if you are taking estrogen in any form, and if you still have your ovaries? I sincerely hope yes to either of those because I would hate you to become horribly imbalanced. Testosterone without sufficient estrogen is, to put it bluntly, a complete disaster in women.

I'm also very concerned about your having to pay so much and also having to put your repeat prescriptions on a credit card - this can be a huge strain financially that can build up over time but I'm not here to preach - anyone is entitled of course to do exactly as they wish but please know that good and effective treatments which have a proven track record are available absolutely free via the NHS. If you are in surgical menopause, you would be absolutely entitled to ask for a referral to a specialist Menopause Consultant and I'm guessing you're in London? If so, you most probably would be referred to the excellent clinic overseen by Dr. Panay.

I may be wrong, but I HIGHLY doubt that hour GP will be able to refer you to TheMarion Gluck Clinic for follow up on the NHS as it's not an NHS approved treatment.

Please don't think I am 'raining on your parade', but like Hurdity I am a little concerned.  xxxx

[dangermouse]

To be fair on Jan Toledano (I was a client of hers a few years ago), she is very passionate about her work and told me that GPs often misinterpret blood test readings and said that I, in fact, had higher than normal oestrogen levels, where a GP had said they were normal. She also disagreed with an endocrinologist from 20 years prior who had said I had low oestrogen as she believed my symptoms all pointed to the opposite. I am starting to wonder if she was right.

Anyway, she gave up her work as a surgeon to work with Marion Gluck (who had a TV show many years ago called The Hormone Doctor). Their products are from the London Compounding Pharmacy so they cannot be regulated due to the nature of them. I had definite effects from them (so they do contain active ingredients) but not positive enough to help me but then I've never had good HRT effects.

If it's made such a difference to you Ricekrispie then that is fantastic and will be down to one or both of those products. I suggest that you check with Jan about the testosterone issues raised and if you are on the oestrogen patches, to check the progesterone is strong enough.

Or if you've stopped the oestrogen then only the testosterone needs checking. I actually still have their products (they are expensive but last a very long time as very concentrated compared to, say oestrogel, if comparing estradiol). The price for private is always high for the first one but I think it went down from £250 to £110 for the other consults or £25 by phone.

It's a shame that compounded products cannot be trialled for their own reputation but I suspect they aren't owned by big pharmaceutical conglomerates that can afford to, like with the Oestrogel. It also opens it up to the dodgier online progesterone cream industry where low strength products slip through the net.