Menopause Matters Forum
Menopause Discussion => Alternative Therapies => Topic started by: Kelrob12 on March 30, 2022, 10:46:13 AM
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Hi
SO im currently on what I thought was body identical (patch and utrogestan, 42 no ovaries) .And thinking of going down the compounded route. Ive search the bar above and read a few posts and see there is some of you who have gone down this route. Ive spoken to a few clinics who offer this and have asked about the differences given the BMS doesn't endorse this route. But still a bit confused. Based on my history I want the lowest possible risk of my tumours returning. The clinics tell me the ingredients in the bioidentical are the same as prescribed on the NHS but the different is they are compounded so the levels can be personalised.
Are there any ladies who have been on star dear HRT and swapped to compounded and never looked back? Ive never understood only needing to replace estrogen and just having progesterone as shedding the lining of the uterus. So many specialist talk about the importance of all hormones having different roles and need a balance - where progesterone has other importance not just thinning the lining? So compounded makes sense to me , Im just hesitant - not sure why though. :-\
thanks Kelly
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Just reading the thread below1 Trying to find the latest beginning page haha
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Hi
As I understand it body identical (nhs) and bioidentical (compounded) are the same products - just one tailors the amounts and route of administration and therefore is not regulated. Seems like that's what you've been told.
I assume you're having problems with your patch and utrogestan??? Otherwise there's no need to swap - as they are the same.
I'm also not the right person to advise on using as hrt as I'm only taking progesterone (for the reasons you note - I am lacking hormonal balance).
It certainly seems to have worked for Mary G. Search up some of her posts. Or she might be along...
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Thanks for the reply,
Im just reading the thread you guys are on - its helpful. So I feel a bit better that the compounded is still the same ingredients. Its not so much having problems I just don't feel good/right but the specialist Im under won't prescribe higher estrogen or testosterone. 100mg patch is her max. She says higher estrogen causes cancer and there's no studies on testosterone. and actually tells me I may never feel good after rhavingmy ovaries removed so just to accept that.
its more my gut feeling that the NHS route and some private who don't compound are very linear - up oestrogen, and progesterone's only role is protecting the lining. I feel I need more balance or all 3 hormones. But at this point Ive no idea if that will help either! 😂 I think sometimes its like clutching at straws
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I feel the same as you Kelly. I always wondered why progesterone in particular is only given to protect the lining of the womb when it has other roles in the body.
I’m becoming very aware of this imbalance as I’ve recently had a hysterectomy and progesterone has been withdrawn from my treatment as I “don’t need it now.” The large amounts of progesterone I took really upset my body but I believe a smaller dose would be more balancing. Also been told to stop testosterone too yet that clearly has a role. So I’m very interested in a more balanced bespoke approach because it seems now that even private consultants are favouring a “ one size fits all” approach when you only have to read half a dozen threads on here to see that it clearly doesn’t!
Don’t know what the answer is but it is pushing more women to experiment with trial and error methods. Big hole in the research and evidence based practice on Menopause and HRT.
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Ask for a referral to a meno clinic. It's more likely it's testosterone that's the missing ingredient and that can only be prescribed by a specialist. They can also prescribe higher doses of oestrogen. It seems most women are fine without progesterone (I'd be delighted not to take it) but a few so feel better with it. The nhs disapproves of compounded because it doesn't conform to the same regulatory requirements as licensed medicines so do be sure to get it from a reputable source. Why do feel something is missing? What symptoms do you have?
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I feel the same as you Kelly. I always wondered why progesterone in particular is only given to protect the lining of the womb when it has other roles in the body.
I’m becoming very aware of this imbalance as I’ve recently had a hysterectomy and progesterone has been withdrawn from my treatment as I “don’t need it now.” The large amounts of progesterone I took really upset my body but I believe a smaller dose would be more balancing. Also been told to stop testosterone too yet that clearly has a role. So I’m very interested in a more balanced bespoke approach because it seems now that even private consultants are favouring a “ one size fits all” approach when you only have to read half a dozen threads on here to see that it clearly doesn’t!
Don’t know what the answer is but it is pushing more women to experiment with trial and error methods. Big hole in the research and evidence based practice on Menopause and HRT.
you'll have to let mw know if oyu get any answers anywhere haha I will the same!
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Ask for a referral to a meno clinic. It's more likely it's testosterone that's the missing ingredient and that can only be prescribed by a specialist. They can also prescribe higher doses of oestrogen. It seems most women are fine without progesterone (I'd be delighted not to take it) but a few so feel better with it. The nhs disapproves of compounded because it doesn't conform to the same regulatory requirements as licensed medicines so do be sure to get it from a reputable source. Why do feel something is missing? What symptoms do you have?
hi,
Im with a meno clinic and have been to Louise Newson. If Im honest didn't like the LN Clinic fo a few reasons. The current Nhs clinic is dead against testosterone fo rme given Ive had tumours - she is quite adamant there is no studies in the safety of it in women - but I do agree with you I have an inkling it could be the key.
But you have to get the estrogen right first or it just converts and Ive no idea if Im at the right level. Some symptoms of low and high estrogen are the same or is it not necessarily low and high but high estrogen with no progesterone. So my estrogen may need to be higher to help joints but without progesterones I may get anxious? :-\
As far as how I feel - I suppose its tired, not low mood as such but flat - the same all the time. Some anxeity but that seems better recently. Change is sex drive - as in it takes more effort fo rme to want to do it than it used to haha
I try to think back as to how I felt when I had my ovaries to decide if progesterone is something I do need daily but I cant bloody remember!
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My anxiety was from oestrogen deficiency, it went after 3 months on HRT. Have you had blood tests to check levels? They have limited use in peri when your own hormones are up and down but perhaps more use for you as you have no ovaries. The feeling flat and tired I had before I went on T, I had little motivation to do anything and no libido at all. There are loads of things that cause tiredness. Have you had tests to check other causes? vit d, b12, iron.
I wasn't aware there was a link between testosterone and tumours. Have you checked she is correct? Are there any studies to suggest it isn't safe?
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My anxiety was from oestrogen deficiency, it went after 3 months on HRT. Have you had blood tests to check levels? They have limited use in peri when your own hormones are up and down but perhaps more use for you as you have no ovaries. The feeling flat and tired I had before I went on T, I had little motivation to do anything and no libido at all. There are loads of things that cause tiredness. Have you had tests to check other causes? vit d, b12, iron.
I wasn't aware there was a link between testosterone and tumours. Have you checked she is correct? Are there any studies to suggest it isn't safe?
She's very nervous of HRT and really doest like testosterone and says its a placebo effect - if im honest she's hard to discuss things with - the kind of Im a doctor your not feeling- and just puts down all my questions. As in she says testosterone is placebo - I wondered whether the ones she gave it to maybe it converted to oestrogen so yes the T levels were the same but the esrogen increased helping symptoms. But as they don't test esgtrogen just T then don't know?
They don't want me on highere than a 100mg patch which gave me 211 pmol oestrogen. I wasn't happy with this as I had read 300 protected bones(cant remember where ) so I tried a 50mg patch myself on top (I know I shouldn't but was so feb up).anyway this gave me 400 pmol levels so Ive stuck at that. I bleed heavily with big clots on Utrogestan so she happy with the lining shedding. I may ask to trial T and just see what she says.
I've mentioned it every phone call with her.
As far as studies - she says there are no studies al all? Not sure its true but that therefore there isn't anything to suggest its safe or not safe. I follow Louise Newson who, even thought I didn't like as a clinic, know has helped a lots with studies and information regarding HRT and they prescribe it readily. I will research more .
I have had bloods and my B9 is low so supplement with that. All other standard tests are ok. Liver and Kindness etc. I do think having the operation I had just messed up my body and its just fighting constantly to level out but cant.
Can I ask what patch/HRT are you on? Did you know your levels before and after?
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4 pumps gel, 12 days x 200mg utro, 1 pump Tostran every other day. As an NHS patient I've been prescribed based on symptoms. For me this if fine as my symptoms are controlled though I've had to increase twice, mainly anxiety and insomnia.
She is talking sh*t when she says T is a placebo. Is she a gp or specialist? Most GPS won't prescribe T and many only 100mg oestrogen so may need a referral to a meno clinic to get it.
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4 pumps gel, 12 days x 200mg utro, 1 pump Tostran every other day. As an NHS patient I've been prescribed based on symptoms. For me this if fine as my symptoms are controlled though I've had to increase twice, mainly anxiety and insomnia.
She is talking sh*t when she says T is a placebo. Is she a gp or specialist? Most GPS won't prescribe T and many only 100mg oestrogen so may need a referral to a meno clinic to get it.
\I totally agree - I don't think its placebo, and nope she's a proper specialist and came recommended by my surgeon! I was surprised to be honest 🧐. annoyingly my old GP was allowed to prescribe if a specialst said so , I've moved and my new area cant even with a specialist letter! Maybe Ill try my GP to get referral to another specialist.
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Maybe it's time to complain? Unless her speciality is unrelated (perhaps she's a gynae rather than meno specialist?) she really should know more than she does. If you look at the NICE guidelines you can has T for low libido but because there isn't a product licensed for women it has to prescribed by a specialist. Once prescribed it isn't for the GP to decide the specialist is wrong. Sorry to rant, it really annoys me we have so much trouble solely because of a bureaucratic problem. There is medical reason we can't have it.
You could try the BMS website and see if you could be referred to one of their specialists.
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hi,
thought I would update - had telephone call update. I asked about testosterone and she happy to trial it but warned me again about the unknown long term effects - beast cancer, cardio vascular and re iterated there is a placebo effect. The caveat is I cant get it thru the NHS. Its £200 for consult and then the prescription and then £200 every 3 months initially. Which at the moment I cant afford - maybe if and when electric comes down!😩😂
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Mine was prescribed by an NHS meno clinic and I get it for free on the nhs (old). Is the £200 for androfemme? It's the only one designed for women but costs a fortune and isn't available on the nhs. Placebo effect is absolute crap, I can't do my job without it (muscle weakness).
Have you tried to get an appointment at an NHS meno clinic?
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Mine was prescribed by an NHS meno clinic and I get it for free on the nhs (old). Is the £200 for androfemme? It's the only one designed for women but costs a fortune and isn't available on the nhs. Placebo effect is absolute crap, I can't do my job without it (muscle weakness).
Have you tried to get an appointment at an NHS meno clinic?
YeH this was an nhs meno clinic. So I’m under her care and the last phonecall I said I’d like to try testosterone but my gp won’t prescribe even with a letter from you. She said no they won’t, I’ll have to but you have to come under my private practice so it will be £170 and I’ll call you to discuss testosterone and then prescribe. I thought it was strange given I speak to her and she knows everything thru the nhs . And no it’s testogel/testim whatever is the male one. I think she’s not for testosterone given there’s no studies of safety in women been done so maybe tries to make it harder to get 🤣🤷♀️X
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That stinks, I think you should report them both. The NICE guidelines say you can have T on the nhs yet your gp and the nhs meno specialist are colluding to force you to pay for private treatment. Time to change gp? She can't decide to ignore the advice of a specialist.
Is the meno clinic based in a hospital with it's own pharmacy? If so she can give you a prescription for use there.
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That stinks, I think you should report them both. The NICE guidelines say you can have T on the nhs yet your gp and the nhs meno specialist are colluding to force you to pay for private treatment. Time to change gp? She can't decide to ignore the advice of a specialist.
Is the meno clinic based in a hospital with it's own pharmacy? If so she can give you a prescription for use there.
Yeah she's baed in a hospital. my GP say they won't its very frustrating. I have emails the speialist will see what she says.
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Am I reading this right please?:
An NHS MS practicing out of a hospital clinic won’t prescribe T unless she puts her private hat on and you pay her?
If so I would complain in writing and linking to the BMS and NICE Guidelines. I’ve not had problems getting Testogel from 3 different regular GP surgeries, two I went in as temporary patient/visitor.
I’ve had issues getting other HRT but not testosterone.
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Goodness me, this isn’t right! Definitely this doctor shouldn’t be doing this and I’m sorry you’re struggling to get what you need. This is so bad.
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Am I reading this right please?:
An NHS MS practicing out of a hospital clinic won’t prescribe T unless she puts her private hat on and you pay her?
If so I would complain in writing and linking to the BMS and NICE Guidelines. I’ve not had problems getting Testogel from 3 different regular GP surgeries, two I went in as temporary patient/visitor.
I’ve had issues getting other HRT but not testosterone.
Hiya,
yeah you've read it correctly. My gp says that even with a meno clinic letter they won't prescribe - they say they aren't allowed. Which is why I asked the specialist to prescribe and so the story goes. :( Its not even the £170 initially - I could possibly forgo some things to pay this but every 3 months isn't realistic for me.
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Sorry keep on this thread - I asked my gp to refer to another meno clinic and they said last week they referred another lady for testosterone and it got rejected . I don't understand the whole can you cant you get it and why some do and other don't?
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Your gp is telling porkies. Isn't allowed? Who's stopping her? The NICE guidelines are national guidelines to stop the postcode lottery. I would insist on the referral to the other clinic, I think she may be trying to fob you off. And report her. If you needed any other medication prescribed by a specialist would she refuse to prescribe it?
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I think you should write to the BMS. This is not right at all.
There are guidelines for testosterone, I don’t like them but they are there and they can prescribe for low libido. It really depends on if the doctor decides you’re bad enough to earn it! It’s appalling I know.
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Kelrob, I get the not totally loving everything about the LN clinic - but there are many alternative private menopause clinics which you might find better, slightly cheaper than LN and easy to get testosterone and more estrogen if that's what you want to try.
I mean, LN isn't the only private clinic in existence. I can't make recommendations for others but I do keep seeing other clinics recommended by women...
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Kelrob, I get the not totally loving everything about the LN clinic - but there are many alternative private menopause clinics which you might find better, slightly cheaper than LN and easy to get testosterone and more estrogen if that's what you want to try.
I mean, LN isn't the only private clinic in existence. I can't make recommendations for others but I do keep seeing other clinics recommended by women...
Yeah there is loads but if im honest Im not in a position at the moment where I can shell out the hundreds needed to go private. Especially for something that is possible to get on the NHS.
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