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[SueLW]

Good to hear RiceKrispie. 

I'm glad you put up a 6 month follow-up. 

I too see Jan Toledano and really like her and the way she works.  She's intelligent and open to listening and has years of experience behind her as a gynaecologist and surgical doctor.  My GP had little clue what to do other than tell me I needed to address menopause.  After 3.5 years of driving my business into the ground and fearing I'd never get off the sofa again or feel happy again it was money well spent to see her and have her help.  I'm not proving easy.  I'm a long way from right yet, but I am up and about again some of the time and even my downtimes (like today) I'm OK in my brain. 

We have tried all sorts of approaches.  She was keen to try me on Estrogel and Utrogestan at some point in the process to see if they would work for me because I could get them from my GP.  But they didn't.  Estrogel makes me feel very wired and on-edge soon after application and then full of rushing anxiety as it wears off.  It doesn't matter how much of a dose I take of it, the same effects happen.  The Utrogestan made me feel suicidal in just 3 days.  Then we tried oestrogen patches, which I felt as if I liked, but they just built up in me and I would bleed again and again and feel terrible.  If I took a patch off when I felt terrible I felt better within a couple of hours.  It was uncontrollable.  We also tried creams from the compounding pharmacy the MG clinic uses.  I didn't seem to absorb them reliably.  We tried lozenges and, a bit like Estrogel, they seemed to spike me and cause anxiety. 

Now that Jan Toledano has set up her own clinic, she uses a different compounding pharmacy in Newcastle (I think, definitely close to NC) who use a different type of cream base and I'm now back on cream and finding it much better for me.  I did a lot of research for myself before I decided to go private and I'm glad I did even though I'm a work in progress.   

On November 30th she and I decided that we had missed my sweet spot for balance when I first started because I was coming off another medication that caused it's own set of awful symptoms.  She thinks I'm very sensitive to the hormones (I agree, I know how the tiniest change knocks me for six for weeks) and that I am also producing my own hormones very erratically and so we weaned me right down low over Christmas so that we could essentially start again and build up slowly.  The weaning process was interesting in that I went through about 20 days in total when I felt quite well in two different spells.  The first spell I was full of happiness and energy and achieved loads.  The second spell was my Christmas holiday.  I was happy and content but physically very weary.  Then in January I suffered a lot of depressed and low days.  She had to take some unexpected time off in January/February so I saw her new partner, but I think that was a mistake as she was unaware of how tricky I seem to be and she increased things too suddenly.  That caused me lots of crippling anxiety.  But I was able to speak to Jan as soon as she returned to work and she pulled me back down to a lower dose and we are working with that for now. 

I am physically tired a lot and concentration is low and ambition and sex drive non-existent.  Yet all those things have improved in the past under her care, but then were overpowered again by too much of something.  So I have to slog it out at this slightly higher than January level for a couple of months and then review again and we will slowly creep things up and watch as we go.

No way would I have had that level of attention from my GP or an NHS clinic.  Yes it's expensive and I dearly wish I didn't have to pay, but this is last chance saloon for me now.  If I can't get well in the next 12 months my business will fold and I will become unemployed, with no pension, no income and a mortgage.  It doesn't bear thinking about.  Most of the time I am not the person I was, but I get flashes of her, sometimes for a day, sometimes for a spell of days, so I know I'm in there and it's possible to get me back with careful adjustments.  On the plus side, my GP knows what I'm doing and supports me anyway he can, so I can get blood tests when I need them and he's recently booked me a scan to check the womb lining, which is fine.

It might not be within everyone's reach.  But lets not knock it, if it's something others choose to do for themselves.

[dangermouse]

The NHS works exceptionally well at the life saving end of the spectrum but is very lacking in preventative medicine and wellbeing. It simply doesn't have the funds to offer such a comprehensive service.

Private healthcare is financially able to invest in new research, more thorough investigation and smarter drugs. Many private doctors, however, will still follow NICE guidelines (particularly if their business relies on insurance referrals) but for many patients this isn't helpful because they are limited in what they can prescribe due to the inflexible nature of NICE.

The docs who are more flexible in their approach (at the expense of insurance driven full patient lists), are much more dedicated to their patients in my opinion. No treatment plan is infallible because complex problems may have complex solutions, but perseverance, flexibility and instinct from a doctor is what you sometimes find in these pioneering docs who play by their own smarter, flexible and more solution-driven rules.

[Hurdity]

Glad you're still doing so well Ricekrispie and thanks to you I'm also back seeing Jan again. I don't yet need oestrogen or testosterone but the progesterone cream is what my body was lacking. Thank you!

Out of interest Hurdity (or anyone who uses Utrogestan), can the tablets be cut up to have smaller amounts? Jan said it would be too potent for me but would be good to know for the future if can't get the creams. I may also try the lozenges she mentioned which are cheaper but can't be combined with other hormones like the compounded creams (I think).

Hi there dangermouse - they are not tablets as such because progesterone is not stable in this form. They are more like capsules containing gooey stuff inside! A few years ago I remember someone on the forum ****ing one with a pin ( a 200 mg oval one) and squeezing a bit out to reduce the dose. The 100 mg ones are tiny and round though so might be difficult. They are calculated to be the right amount to protect the womb but of course some women would prefer lower doses especially those that only take a low dose oestrogen and 100 mg daily is too much.

Hurdity x

[dangermouse]

Ah thanks Hurdity, it must be suspended in an oil a bit like Progest-E where they use Vit E.

[ricekrispie]

After 3.5 years of driving my business into the ground and fearing I'd never get off the sofa again or feel happy again it was money well spent to see her and have her help.  I'm not proving easy.  I'm a long way from right yet, but I am up and about again some of the time and even my downtimes (like today) I'm OK in my brain. 

Dear Sue

I've had to go away and digest your story. It's frightening and not unlike my own. I don't think we realise just how much the meno can put some of us on a knife edge until we stand way back and have a good look at it. I am so glad you are able to persevere with Jan. All the very best to you.

I am requesting my bloods - prog, test and oestrogen - to be tested again by my doc then I'll go back to Jan and see where we are with it all. I think three blood tests isn't much to ask from my GP, is it?

Good luck to the lot of us. As you say, if you're going to go bust if you don't get help then the money is found somehow.

[Joesmum]

Forgive me for jumping in but your thyroid results are  awful!

TSH is just a pituitary hormone amd means very little when you consider that both your FT4 and FT3 are virtually at the bottom of their ranges.
FT3 is the usable hormone which converts from FT4 and yours is extremely low. But your FT4 which really needs to be above 1/2 way in the range is tanked.
Ideally you are looking for both FT4 and FT3 to be  just above half way in their ranges or in the top third of their ranges.

I'm not surprised your tired. Or were tired. The hormones you're on may be compensating for the lack of thyroxine.

[Blakeygray]

Thanks for the update Ricekrispie, it's nice to hear success stories. It's often a long, tiresome,  journey,  trying to find  the right solution to our individual experiences. 

I contemplated going down the private route when my gp refused  to prescribe testosterone but didn't. 
 
I've been on Tibolone since November and feel great. I've also been on a daily blob of testosterone gel for coming up to three months.

I get my blood test results next week and am interested to see what my thyroid, testosterone, and other hormonal levels are at.

[Noheroicsplease]

This is really interesting. I'm pleased some of you guys are feeling better.

My testosterone has been tested many times and is very, very low. Has been for years - virtually non-existent a couple of years ago.

I saw Jan Toledano many years ago, too, just after I had my son and was diving into early menopause and she was really nice.

My question is: although I feel ok on mirena coil and one pump of estrogel, I feel like I am missing testosterone still. Despite lots of exercise, muscle weakness, fatigue and low libido.

Is it worth going to my doctor again? Are they likely to refuse? I wondered whether a bio-identical doctor would add bio-identical testosterone in, or if this was unethical?

[Blakeygray]

Testosterone was the missing piece of the jigsaw for me too so hopefully you can get it prescribed.

No harm in asking.