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[Shells99]

Morning all

I'm feeling a bit overwhelmed today. I'm 54 years old and post menopausal - last period 4 years ago. I've just had a call with a private GP who runs a menopause clinic which I went to 3 weeks ago. She was calling to discuss the blood tests that she insisted I had before deciding whether she could prescribe testosterone. I was hoping to try this, thinking it might help with zero libido, muscle aches and tiredness.
I have been taking livial/tibolone for about 18 months but these symptoms still persist and I have reached breaking point. I spoke to my GP about 6 months ago, suggesting that I may need to try a different HRT/increase my oestrogen and/or try testosterone. My own GP was unwilling to change my treatment without getting advice from a GP-lead menopause clinic, which she referred me to on 31/3/22. I am still waiting on the appointment - I was told yesterday that I may expect an appointment in 6-8 weeks! I think the main issue is there is a history of breast cancer in my family, my sister had the disease and tested positive for the gene - I tested negative. However the GPS I speak to all seem afraid to give me any more oestrogen because of this family history, regardless of my negative gene test.
So I decided to pay to see a GP who runs a menopause clinic - got the blood tests done and results as follows;

Oestradiol                 63 pmol/L
Progesterone         <1.0 nmol/L
Testosterone          0.20 nmol/L
SHBG                    43    nmol/L


Free Androgen Index  'Unable to calculate'  (Don't know why the results say this, I did find a calculator online and it's giving me a Free Testosterone of 0.000745 nmol/L and 0.373%.
The calculator also gives a reading for 'bio-available testosterone' of 0.168 nmol/L and 84%

So the private GP agreed that my oestrogen and testosterone were low. She also said that she wouldn't be prescribing any oestrogen OR testosterone. No testosterone because my body would convert it to oestrogen and no oestrogen due to the BC family history. She suggested a referral to a Consultant, which I can't afford at this moment in time, and there's a 3 month waiting list for the private clinic! I have already spent £250 on one appointment and blood tests and I am worried that a specialist will refuse to give me anything else too. The GP just kept saying that she empathised with my situation but just couldn't prescribe anything.

Meanwhile I am trying to process the blood results and understand why the readings are so low (they seem really low to me?) when I am already taking tibolone and vagifem. Then I wonder if I have an absorption issue. I also feel a little angry that I am not allowed to take control and make an informed decision regarding increasing my oestrogen, balancing the risk with my quality of life. I thought that I also may have been able to trial the testosterone for a few months, then get the bloods done again to monitor the oestrogen/testosterone levels.

I just feel so low about it all today, I was holding on to the the hope that going private might get me the testosterone quicker and I would be able to enjoy a sex life again, not to mention see an improvement in my chronic back and muscle aches.

Thanks to anyone who has read this far - I would welcome any comments on my situation, advice what I could do next?

   

[Marchlove]

Hi Shells

How awful for you to be put in this position, it would make me very cross!

I know money is a bit tight for you right now but I believe Newson Health
would prescribe for you.

https://www.newsonhealth.co.uk/wp-content/uploads/2021/08/Family-History-of-Breast-Cancer-FINAL2.pdf

As you’ve already got your blood tests done why don’t you email them and ask in theory would they prescribe and see if you can get a zoom appointment.

You might only have to pay for the consultation as you’ve got recent blood tests.

X

[sheila99]

The cheapest option for a consultant's opinion would be an email to Dr Currie who runs this site. I don't think she can prescribe herself but she can give her specialist opinion on what your gp should have - if your gp will accept it. From memory I think it's £30. As above I'm sure newson will prescribe it but it'll cost.

[CLKD]

U don't have to pay to see a menopause clinic, there are several on the NHS: all have waiting lists.  Could you see what is available in your area then put yourself forwards for a cancellation appt.?

Also it will depend on which 'cancer' has been treated as well as what the various clinicians believe, some will prescribe as there are different ways of delivering HRT.  If your GP won't prescribe she/he should have referred you to a Clinic.

Certainly a drop in oestrogen levels can cause laxity of muscles.  Let us know how you get on.

[CrispyChick]

This is awful.
I'm not one for making recommendations of 'random' things, but you are being so let down here. I too felt let down by the nhs during my awful peri woes (still ongoing).

Look into DHEA. This can help in its own right, but can also apparently raise testosterone.

It can also raise estrogen.so you'll need to weigh it up.

But do look into it. It comes as tablets or creams. I'm only familiar with biovea and onas. Do your research and weigh it up.

X

[sheila99]

Will your own gp prescribe a higher dose of oestrogen given your very low reading and the negative gene? For some libido returns with sufficient oestrogen so worth a try imo. She's right about T being converted so they'd want you oestrogen higher first. As above you can ask for a referral to an NHS meno clinic but there may be a long wait.

[Joaniepat]

As you are on livial/tibolone, might you be better off using real hormone replacement? As I understand it, Tibolone just mimics the effects of the three female sex hormones, so I am not surprised your blood test results are low. Good idea of sheila99's to send an email query to Dr Currie.
JP x

[Mary G]

I agree with Joaniepat, tibolone will not raise hormone blood levels, it mimics hormones.   

Your oestrogen level is very low and probably rock bottom so yes, I think you would feel much better on HRT and you would probably only need a low dose to feel significantly better.

Perhaps you could contact a reputable online pharmacy and see if they can help or as Crispy suggested, buy it from Biovea?   

That doctor sounds completely useless, what kind of setup is it and can you make a formal complaint and get a refund?