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[Starfish]

 Hi everyone,

I started hrt at 42 due to early menopause. It’s been 4 years of trying tablets various patches and gel. Oestrogel brought my levels up to 400 but I gained over a stone.  I tried evorel 100 but my oestradiol levels were only 280. With estradot it is 300. But it’s now out of stock. I’m tired a lot, demotivated, no libido and my brain fog is starting to scare me as it is affecting my daily life, both home and work. it’s  so bad I’m worried I’m getting dementia. After seeing my gp again she referred me to the meno clinic and asked about testosterone. My gp practice sent a letter from the clinic to say I had been sent back to my practice for hrt management (advised trying lenzetto) and that testosterone is not used as there is no evidence that it works.

I’m feel so hopeless and unheard, despite trying. Not only that, I’m worried about my heart and bone health into the future. If hrt is not fully working, I’m worried that this will affect my long-term health and quality of life.

[CLKD]

I understand from what U say that U didn't get an appt at a Clinic, that a decision was made on the back of the referral letter? 

Was it a dedicated menopause clinic or a Gynaecologist who has read a bit about menopause?  What is your GP's take on this?  Have U tried Lenzetto mayB go with this and if possible go privately to a different Clinic?

[Starfish]

Hi CKLD,

Yes it was from a referral letter sent by my gp to the Menopause clinic. I have not been able to speak to my GP, yet as it is impossible to get an appointment at the moment since they are so short staffed. I’ve heard mixed reviews on Lenzetto so I’m not holding out hope.

[bombsh3ll]

I'm so sorry this has happened to you, what a dismissive and unhelpful response.

There is plenty of evidence for testosterone, even the NICE guidelines say it should be considered (only to make us sleep with men, but still)!

Unfortunately I think that like many women, if you can possibly afford it then it would be well worth paying to see a specialist.

There is at least then a good chance that your GP will continue any prescriptions on their direction (although unfortunately many women still end up having to self fund testosterone, it is a real postcode lottery).

[Starfish]

Thanks Bombshell,

Your line about the parameters for testosterone use by Nice made me laugh.

The dr who replied on the letter has her own clinic and seems to be reluctant to prescribe testosterone. This is a line from their website:

“I practice evidence-based medicine in line with NICE guidelines and do not support the use of unlicensed bio-identical preparations (fair enough) higher than recommended doses of hormones (thought some clinics did) or routine use of unlicensed testosterone”
(So maybe not this private clinic either).

[bombsh3ll]

So she doesn't support "routine" use of testosterone but is probably willing to prescribe it privately to some patients.

That's a real conflict of interest, it was the same with my son's orthodontist.

I don't think any consultant should be gatekeeping what people can and can't get on the NHS whilst they are at the same time offering that service privately.

Luckily there are now multiple options for online consultations so we don't have to go locally if paying for care, you can research different specialists and find someone whose approach aligns with your needs.

Another thing you could do is put in a freedom of information request to your health board asking how many women have been prescribed testosterone by the NHS menopause service. If it is greater than zero then you have a good case to ask to be re referred and say why them and not me.

I have successfully done this in a similar situation.

[CLKD]

Tnx bombsh311.

I wonder Starfish how many hours this particular 'GP' works for the NHS?  Many seem to be part-time ............. which is making getting appts. difficult.

[sheila99]

I would avoid anyone who follows the nhs guidelines, imo it's more about cost control than what's good for any individual. I am not advocating newsonhealth as I currently only use the nhs but they have £50 off for new patients atm.
 We have a new gynaecology advice service as it's a 2 year wait for a meno clinic but their advice is laughable too, they are certainly not experts (I can have 150mcg oestrogen for 3 months but then I have to go down to 100 and if I have  pessories for va I can't also have cream for the outside, I will almost certainly die from cancer if I do  ).

[Ayesha]

(I can have 150mcg oestrogen for 3 months but then I have to go down to 100 and if I have  pessories for va I can't also have cream for the outside, I will almost certainly die from cancer if I do  ).

If you were actually told this I would challenge it, its completely wrong to even suggest such a thing concerning the use of topical HRT.

 

[CLKD]

who to challenge it with though  - if surgeries are counting pennies they will refuse to prescribe

[SundayGirl]

   Not only that, I’m worried about my heart and bone health into the future. If hrt is not fully working, I’m worried that this will affect my long-term health and quality of life.

Please put this out of your mind. There are no guarantees that HRT will prevent osteoporosis and heart disease and there are no guarantees that you will develop osteoporosis and heart disease if you don't use HRT.

[CLKD]

If U R worried about your over all health, mayB have a chat with either the Nurse Practitioner or a dietician to go over your food intake.  Also good regular exercise and plenty of fresh air will benefit .  Do U have hobbies Starfish?

[Starfish]

Thanks CKLD and Sundaygirl

I have a healthy diet and I walk everywhere and lift weights, when I can. I’m Worried about my future health, quite a bit,  because my mum went into early menopause at 40, she was told to stop hrt due to research published by the women’s health institute linking hrt to breast cancer. She went on to develop osteoporosis and heart failure, both affected her quality of life and she died at 73 a year and a half ago.

[CLKD]

I wonder who told your Mum to stop HRT?  A GP ?  So sad and so un-necessary 

If U have a healthy diet and exercise regularly, taking HRT may not improve your bones anyway.  I don't use HRT and am OK. Let us know how you get on.

[Ayesha]

Considering your family history you do have a good case here, therefore I find it difficult to understand why you are being treated so badly by the NHS.
I am sure you will get there eventually but in the meantime think about your lifestyle compared to your Mum’s, how did she live her life compared to you after her early menopause. Are you taking vitamins and supplements to compensate for the loss of oestrogen, VitD, Calcium for instance for bones.

My father in law died from an aneurysm of the aorta, all his family got tested and were all fine, and still are after many years. It was simply down to his very unhealthy lifestyle, smoking, overweight, drinking too much alcohol. Just an example that what happened to your mum doesn’t necessarily mean the same will happen to you.

Do stress your family history when next speaking to your medical providers explaining how worried you are for your future health.