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[dangermouse]

Oh and just to add that at the first consultation, Jan said she didn't think the hormones would help me but I asked to try them anyway but she would only give me progesterone (to take second half of cycle) and testosterone to use occasionally. A few months later I convinced Marion Gluck to prescribe me oestradiol over the phone but Jan had been right and, where the others made me feel a bit worse, that one made me feel terrible! This also happened later (after my symptoms had exacerbated) with the Oestrogel.

I think when your oestrogen is too high, more common for many in peri, adding more just complicates things. This may be when phytoestrogens can help to rebalance them. Flaxseed made me feel great but I developed progressively worse gas pains from the oil. Caffeine seems to be the most effective phytoestrogens for me - it's just a shame I hate coffee!

[ricekrispie]

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?

Forgot to say she lowered my oestrogen to 37.5mg and changed me from Evorel to Estrogen patches. I feel much better for that too. The NHS says you don't need progesterone if you've got no uterus but they don't think about the other effects where you may be lacking: depression, muscle wasting etc. So I'm on lower oestrogen, a dose of progesterone, not progestin, the bio-identical kind, and testosterone. It's lush!

[ricekrispie]

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.
[/quote]

Thank you very much. Really appreciate it.

[ricekrispie]

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.

That's brilliant. Report back won't you?

[ricekrispie]

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

Yes I am 37.5mg Estrogen patches. Keep going you won't know yourself in a week. Today I had a whacking great masonry drill out, put up curtain rails and all sorts. NEVER would have done that three weeks ago.

[Blakeygray]

Well my gp didn't ring me back today, so I'm going to have to make an appointment to see her.
Hurdity, yes all the info I have about NICE and  the Menopause Society I've found on here.

I still have my ovaries and have never had HRT or anything else and believe that low doseage T will solve my particular problems. Being a lifelong tomboy and fitness enthusiast I miss my lean body and sex drive.

[ricekrispie]

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

I really need to find out more myself, I just grabbed it with both hands! It's made in a compounding pharmacy and is bio-identical so not Progestin. My friend also had her Marina coil with prog taken out and it on the bio-id prog and it's transformed her.

[Hurdity]

Eek ricekrispie. I would not lower oestrogen and then add testosterone - but as I said your T prescription is very weak. Progesterone is a sedative at low doses and a depressive at higher doses!  Muscle wasting is partly down to tesosterone ( amongst other hormones I think - but not progesterone! How you respond also depends on whether you have ovaries and also whereabouts you are in menopause re your own cycle if you still have ovaries, regarding what will work?

I can't see now what you said about thyroid and what treatment you are getting if necessary?

Whatever the reason (for your improvement) just to re-iterate I am glad you are feeling better but  other members please do not feel you should have to consult this clinic at great expense to feel better!!

Hurdity x

[ricekrispie]

Hi Hurdity, and Tempest

Thanks for your concerns and for raising them I realise that my post was a little hasty and missed a couple of things out so I'll be clearer.

I went to see Dr Toledano at Marion Gluck, I agree about MG it's not her I wanted to see. Dr Toledano has just left and set up on her own. She's a doctor, surgeon and endocrinologist who worked in the NHS for years before going on her own.

I paid because I could no longer get anywhere, this is what happened:

Four years ago I was so tired I slept and slept. Diagnosed with huge fibroids, had a TAH but kept ovaries three years ago last week. I did start to ovulate again, for over a year I'd say but in the op I'd lost half my blood volume and took a good year to recover. At the beginning of last year I saw the GP who did my FSH levels, which according to NICE wasn't needed as she should have assumed meno and prescribed oestrogen, especially as I was nearly 50 too, but she wouldn't do it. I dragged myself through last year up until I could no longer cope and was off work (self employed only earner) for six weeks. I'm lucky to have such a brilliant assistant who could keep things afloat while I was nailed to the sofa.

Finally the GP did another FSH test which showed I was in menopause. Prescribed Evorel 25 which was fantastic - hot flushes subsided, insomnia eased a little, so went up to Evoral 50 but I put a stone on in three months! Come this January I continued to drag myself about the place suffering from what I call my menopausal half life. At least three afternoons a week having long sleeps, brain fog, not memory, insomnia still, unable to lose weight, no energy whatsoever. And I no longer socialised, I was becoming very isolated. I had started therapy with some CBT involved too in November and still carry this on, it's helped me greatly to come to terms with the meno and a few other things. That costs £30 a week and that's thanks to my lovely therapist taking me on as a low cost client. She also worked in the NHS for years and knows my story all too well. I don't live in London by the way, on the Sussex coast.

I went to see GP again, another one, who took my testosterone levels which came out at 0.7 - in the normal range - and refused to prescribe any testosterone due to the risk of heart disease even though the risks are tiny, and I was begging for it. No progesterone either. So I decided to tackle it with food. Found a great nutritionist who really helped me. I got off sugar, wheat for a while, and now eat far better than I did. I don't drink alcohol but considering what a sugar head I was I cannot believe that in four months all I managed to lose was 9lbs! However my depression practically left me, my overall mood improved but still I was left with the extreme fatigue, no energy, brain fog and a total inability to get any decent work done. I will not be in a position to retire probably ever but certainly not for the foreseeable couple of decades. After two more GP visits and absolute refusal someone recommended Dr Toledano, I should stress again not Marion Gluck.

I've lost so much income I felt I had no choice. I haven't heard great things about Prof Stubbs to be honest but equally I hadn't researched others much as I liked the look of Dr Toledano. I agree, it's appalling to have to pay so much to get what you need but I didn't have the energy to fight any more, or research anything.

My results were:

17-Beta OESTRADIOL 357

Ref Range:( Follicular 98 - 571 )

Ref Range:( Mid-cycle 177 - 1153)

Ref Range:( Luteal 122 - 1094)

Ref Range:( Post-meno < 183 ) pmol/L

PROGESTERONE 2.1

Ref Range:(Follicular 0.6 - 4.7)

Ref Range:(Periovulatory 2.4 - 9.4)

Ref Range:(Luteal 5.3 - 86.0)

Ref Range:(Post-menopause 0.3 - 2.5)

For Day 21 Progesterone:

>30 nmol/L usually indicates ovulation

< 5 nmol/L indicates no ovulation has occurred nmol/L

R.RANGE

D.H.E.A. Sulphate 4.6 umol/L 0.3 - 11.0

R.RANGE

THYROID STIMULATING HORMONE 2.05 mIU/L 0.27 - 4.2

R.RANGE

FREE T3 3.7 pmol/L 3.1 - 6.8

R.RANGE

FREE THYROXINE 12.3 pmol/l 12.0 - 22.0

Thyroglobulin Antibody 26.7

Method used for Anti-Tg: Roche Modular IU/mL(0 - 115 )

Thyroid Peroxidase Antibodies 13.1

Method used for Anti-TPO: Roche Modular IU/mL(0 - 34 )

Testosterone 0.7


She was of the opinion that I had way too much oestrogen and not enough progesterone and that a small amount of testosterone would be good, that I didn't need DHEA as my levels for ok for my age and my thyroid wasn't bad so I am now taking:

Estradot 37.5mg patch and in a cream progesterone 75mg and 0.5mg testosterone in 3ml of cream twice daily. I'm taking it for three months then we shall review.

I cannot tell you what a difference it has made to me. I am my old self to a greater extent in that I can function, normally. I now cook far better food for myself, I have muscle back, and power in my body. I walk at least an hour a day with the dog, she doesn't know what's hit her. I am sleeping so much better, my brain is back on and not just because I am sleeping. My afternoon naps are almost zero now, I am able to prioritise jobs, get them done more to the point and my assistant has really noticed how much we are getting done now. Everyone says how much happier I am, that I'm smiling more, am more relaxed and far less stressed. To be honest I don't care if the cream facilitates the energy which leads to better sleep, exercise and eating which in turn makes me feel better, I suspect it's both but while I didn't want to spend money I didn't have, and I really don't, I was getting nowhere with the doctors.

So tomorrow I shall go back to the GP armed with my new lotions and potions and my oestrogen to see what they say. If they're truly shocked and disgusted then maybe, just maybe they'll refer me to a meno clinic, though what they will do for me, and how long it will take to get there is anyone's guess.

So I agree BHRT is tricky, and you should always do your homework. Now I'm back on brain wise I'll be doing a lot more and may not go back for more cream but do something else. Only time will tell. Which is why I belong to this group and thank you for your concerns and level headedness.

[ricekrispie]

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.

Hi Dangermouse - brill name - yes it's the compounding pharmacy and they won't do regulation trials as they cost hundreds of thousands, it is a great shame I agree. Jan Toledano left MG a couple of weeks ago so I'll see her at her new clinic. It will cost around £33 a month from now on if I can't get referred but to be honest that's a drop in the ocean when you consider how much money I can earn feeling like this. It more than pays for itself.

What are you doing now for treatment if it's ok to ask?

[Tempest]

Thank you so much for your very informative reply about your story, Ricekrispie! I can see very much that menopause had pretty much brought you to your knees, just as it has many of us who are here. I totally respect what you are doing, and what brought you to take measures outside the 'establishment' in order to feel well.

One interesting point you made was about receiving too much estrogen. I wholeheartedly believe for some of us this can be true! I have had a TAH and BSO and now find myself in the position that everyone feels I should be bombarded with high levels of estrogen to feel well. Well, I can say hand on heart that the latest 'experiment' in this direction for me is making me feel very grimly unwell, and I feel I may have a fight on my hands to try to convince the experts that yes, I need SOME estrogen (the right amount for me) but I don't need MASSIVE amounts. In the last few weeks I have received communication from my Consultant that I MUST increase my estrogen and against my better judgement, I have now done this twice in less than a month and feel awful! The Consultant just last week wanted ANOTHER increase, but I'm going to stick to my guns and refuse because my body quite simply can't cope! I think I appreciate your Dr. Toledano's gentler approach.

I really do wish you well - as you've had a TAH it isn't important that you have a weighty dose of progesterone either. Keep us posted on your journey! xxxx

[Hurdity]

Thanks for letting us know your full story ricekrispie - as I said it is great that you feel better. The thing is as you've had a hysterectomy you won't know where in your cycle those bloods results were taken and if you are not ovulating - or in the first half of your cycle that amount of progesterone is normal and it is only needed in high quantities for maintaining pregnancy, otherwise the low levels are sufficient. It won't do any harm though but might actually contribute to more tiredness, if it is absorbed.

Your oestrogen levels also are not especially high but healthy . Again it depends where in your cycle you were but if nearing post-menopause or beyond then that is still a very healthy level, but not especially high ie not too high.

What about thyroid though? What were your results, what was tested and are you getting any treatment for this too? Sorry I can't now see your original post!

As I said on another thread this evening - i think increases in oestrogen need to be done slowly and in small increments because it does seem that for some women the body reacts to sudden large increases too - even if overall levels are still low 

Maybe the tiny amount of T is really making a difference - and if so it is promising for many women - I know my small petit-pois sized blob, although a lot more than you are taking - has had a huge difference! We really need a product designed for women and properly trialled!!!

I hope you continue to feel better with plenty of energy .

Hurdity x

[dangermouse]

That's interesting to know thanks. I'm not taking anything at the moment as I only used the contraceptive pill when my oestrogen was so high (apparently mid peri oestrogen surges), I was too nauseous to eat. Things have calmed down and I'm hoping as my oestrogen subsides I may feel better in time.

I too am self employed and the only earner so I had to take a (very demanding!) part time job recently to help with bills, as I'd taken 6 months off when I was too ill to work and I now struggle with drive and creativity to do essential marketing etc. I get moments (like during period) where I feel more balanced and driven but it's very brief before oestrogen starts rising again. However, I still have to pinch myself that I am trudging around London being part of society again rather than being holed up in my flat (or sat for hours in A&E waiting for yet another drip!) as I was over the winter.

Glad you are doing so well!

[Blakeygray]

Ricekrispie, here are the bullet points I intend to mention to my gp.

British Menopause Society May 2016
"50% of women say sex life is affected of that 32%say reduced libido"

Women suffering from a loss of sexual desire should be offered testosterone on the NHS, a doctor has suggested.

Nick Panay, from the Royal College of Obstetricians and Gynaecologists, told a GPs' conference that it could also improve women's energy and mood.

But he said there were no licensed testosterone products for women, who need much lower doses then men.

Since there are no licensed products available for women, he had to prescribe it "off-label" which he found "frustrating"

He said he believed testosterone should be made available to all women who could benefit. Loss of libido affects 15% of menopausal women.

Dr Channa Jayasena, a clinical senior lecturer in endocrinology at Imperial College London, said testosterone can be given to women in much lower doses than men.

November 2015,  NICE Guidelines do make provision for doctors to think about prescribing testosterone off licence for low libido (in addition to HRT).

"Consider testosterone[1] supplementation for menopausal women with low sexual desire if HRT alone is not effective."

This is the footnote referred to as [1] above:

"At the time of publication (November 2015), testosterone did not have a UK marketing authorisation for this indication in women.

The prescriber should follow relevant professional guidance, taking full responsibility for the decision. Informed consent should be obtained and documented. See the General Medical Council's Prescribing guidance: prescribing unlicensed medicines for further information."

..but you don't need to be tested for testosterone though. If you have low libido in menopause and HRT hasn't improved things, and you aren't on any medication known to depress libido (eg ADs - and other meds?), then docs on NHS can prescribe off licence.

You would need to find a doc willing though, and take/print off the NICE Guidelines - relevant section! If docs in practice not able/willing to prescribe then ask to be referred through NHS to your nearest menopause clinic - could be quite a drive but also if so find out if they also are willing. At least a meno clinic will know about the guidelines - as long as you see a gynae and not a nurse (at the meno clinic that is). Some other symptoms of low T are tiredness.

I found all of the above from links other women had posted on here. I acknowledge them and the forum.

[ricekrispie]

That's interesting to know thanks. I'm not taking anything at the moment as I only used the contraceptive pill when my oestrogen was so high (apparently mid peri oestrogen surges), I was too nauseous to eat. Things have calmed down and I'm hoping as my oestrogen subsides I may feel better in time.

I too am self employed and the only earner so I had to take a (very demanding!) part time job recently to help with bills, as I'd taken 6 months off when I was too ill to work and I now struggle with drive and creativity to do essential marketing etc. I get moments (like during period) where I feel more balanced and driven but it's very brief before oestrogen starts rising again. However, I still have to pinch myself that I am trudging around London being part of society again rather than being holed up in my flat (or sat for hours in A&E waiting for yet another drip!) as I was over the winter.

Glad you are doing so well!

For crying out loud, Dangermouse, I don't know how you do it! You sound far worse than me I'm so sorry. This prescription has really made a difference to the determination, motivation and drive. Yesterday I had a masonry drill in my hands and was hammering holes into walls. I can honestly say I haven't had the wherewithal to do anything like that for a good four years. I think you're amazing.