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[CrispyChick]

Ok...so being in one of my worst months ever - I'm now feeling absolutely friggin sick with hormones today. Feel absolutely hideous.

And this is better than the first part of the month - where I basically felt so ill I wanted to die.

So...I'm opening my eyes. If I feel so desperately hornonal - perhaps all my issues are extreme (weird, odd, unusual) hormone sensitivity. Chemical meno made me feel horrific. That was no hormones whatsoever. But I think my body responds to the change. Not the levels.

NHS endocrinology said they couldnt help me. But weirdly did say if I went through the private sector now doubt lots of extra tests would be done.

Well...I'm going to see an expert in ME, MCAS and various other things. And once they are ruled in/out I'm thinking I need to keep fighting for my quality of life.

So I want to investigate private endocrinologists who specialise in woman's hornones, peri etc.

Any recommendations very gratefully received. Bonus points if in Scotland.

[Mary G]

Crispy, I think that's a great idea in fact the more specialists you can consult to rule things in or out, the better.

I can't personally recommend anyone but I'm sure someone else on here can.  I'm pretty sure Wrensong has an excellent endocrinologist she would recommend but I don't know where they are geographically.
Eventually someone has got to come up with a proper diagnosis and from everything you have said it's definitely connected to hormones in some way.  The question is how?

You mentioned seeing a neurologist and I saw a neurologist in the past to get a formal diagnosis for my silent migraines auras but other than ruling out any serious underlying medical conditions, it wasn't terribly helpful and their knowledge on hormonal migraines was limited.  I find specialists have a fair narrow field of expertise and a neurologist is not necessary going to be able to help much with hormone conditions.  There doesn't seem to be much of a crossover between the different areas of medicine.

Keep going and hopefully you will get that all important diagnosis.

[bombsh3ll]

I'm not sure about Scotland - I've only ever seen an NHS endocrinologist who was a misogynistic old duffer, claiming in one appointment that the blood pressure boosting benefits I was getting from licorice root must be a placebo, and in my next appointment that it was actually him who had discovered and written papers on its antimineralocorticoid effects!

Which unless he published in hieroglyphics on ancient Egyptian tablet, where the earliest reference to it's medicinal properties has been found, cannot have been quite true!

Unfortunately it seems to be the same crowd who work in the NHS supplementing their income in the private hospitals in Scotland.

I can however recommend One Welbeck in London where I saw the legendary Dr boon lim - he is a cardiologist but they do have really good multidisciplinary specialists including menopause and endocrinology.

It is good where there is diagnostic uncertainty or crossover between specialities as they tend to collaborate to provide holistic care for the individual as compared to the siloed practice within the NHS.

Another London option sorry, but the clinic founded by the late professor Studd is still there and being run by those he trained. They specialise in everything female hormone related and if anyone can turn around a really challenging case, the patient who has "been everywhere and tried everything" with no relief, it is them.

I also think highly of Dr Newson and co however I think both their remit and their armoury in terms of treatment options would maybe be a bit limited in the setting of someone with potentially multiple intersecting chronic conditions whose healing is likely to require more than just increasing doses of body identical E P and T.

[laszla]

I'm not sure about Scotland - I've only ever seen an NHS endocrinologist who was a misogynistic old duffer, claiming in one appointment that the blood pressure boosting benefits I was getting from licorice root must be a placebo, and in my next appointment that it was actually him who had discovered and written papers on its antimineralocorticoid effects!

Which unless he published in hieroglyphics on ancient Egyptian tablet, where the earliest reference to it's medicinal properties has been found, cannot have been quite true!

Unfortunately it seems to be the same crowd who work in the NHS supplementing their income in the private hospitals in Scotland.

I can however recommend One Welbeck in London where I saw the legendary Dr boon lim - he is a cardiologist but they do have really good multidisciplinary specialists including menopause and endocrinology.

It is good where there is diagnostic uncertainty or crossover between specialities as they tend to collaborate to provide holistic care for the individual as compared to the siloed practice within the NHS.

Another London option sorry, but the clinic founded by the late professor Studd is still there and being run by those he trained. They specialise in everything female hormone related and if anyone can turn around a really challenging case, the patient who has "been everywhere and tried everything" with no relief, it is them.

I also think highly of Dr Newson and co however I think both their remit and their armoury in terms of treatment options would maybe be a bit limited in the setting of someone with potentially multiple intersecting chronic conditions whose healing is likely to require more than just increasing doses of body identical E P and T.

Sorry for the thread detour but I would love to know your thoughts on Boon Lim - I read his book and have been considering a consultation, he is pricier than most cardiologists but perhaps worth it?

[bombsh3ll]

Dr Boon Lim is amazing, he gave me back a life, not the one I had lost but one that I could make meaningful and on good days enjoy.

I have severe dysautonomia due to a brain injury and untreated long duration CSF leak at the age of 34, and had been completely abandoned by the NHS, whose only management plan was to go away and spend the rest of my life lying down.

With miserably low blood pressure and a heart rate of around 38-42 I was almost completely bed bound, living a syncopal, supine existence.

Dr Boon Lim advocated for me to get a Biotronik CLS pacemaker which was fitted on the NHS locally, which has made a tremendous difference as well as other treatments, that I can now sit up in reasonable comfort, go out, and exercise at the top of my ability without further deteriorating my resting heart rate.

He is both knowledgeable and compassionate, qualities often lacking in medical professionals, and it is very rare indeed when the two co-exist.

For me it was worth every penny.

[CrispyChick]

Thanks folks.

Mary, you're so right. It just dawned on me yesterday that there is no point having any money whatsoever if I feel deathly ill constantly.

So I do feel I want an expert endocrine opinion to rule things out (or in!)

It's just deciding who...there is one at my local spire who is endocrinology and deals in menopause. But she will come from an NHS silo. 

I looked into Dr paney previously and even called up for availability. But then decided my issues are bigger than hormones. Does the studd clinic do endocrine too???

I've seen this name a lot - Dr Abbi Lulsegged. He is endocrinologist and does MCAS etc. But also very good at looking beyond the silos. But then I read you don't get Kuch fir your money and always wants costly tests etc. It's all so overwhelming.

Anyone seen Dr Abbi Lulsegged???

Thanks.

[Sophya]

If you can travel, try the London Endocrine Centre. They handle complex peri and hormone sensitivity cases and accept private consultations online too.

[AmandaJR]

Crispy, I’m so sorry that you’re still going through all this. Every time I come here I hope to read that things have improved for you.

I had similar symptoms to you during the Covid years and started with Endo #1 three years ago. I’m now on Endo #8 and finally feel like I might be in the right hands BUT none of them have known very much about peri or menopause. I am still undiagnosed.

I think your Neurologist may be NHS, imo you need to keep a foot in the door with NHS to escape hideous costs. Neurology can refer you to Endocrinology, it will take time but it’s a route to keep open.

I would see the best specialist you can for sex hormones, Professor Nick Panay etc.  because if he can’t help he can assist your GP/Neurology to get you to the NHS Specialist needed. I had to do this to assist NHS endocrinology.

I had to split my symptoms/care after the private route got alarmingly expensive and returned little help. My peri/meno symtoms are controlled after moving my sex hormone care out of the U.K.

It’s a long journey but please get your ducks lined up. I know that feels impossible whilst feeling so ill.

I live in Scotland, I haven’t seen an Endo here.

Please feel free to PM me if I can help with anything.

Don’t stop trying - 7 of my endos have said this to me.

Mandy.x

[CrispyChick]

Thank you ladies  . It was nice to wake up to some messages on this thread.

Sophya - have you used the London endocrine centre yourself? Or know someone who has???

Mandy - thank you so much. A few questions...

So you've seen 8 endocrinologists? Because the first 7 couldn't help?? . But each one has encouraged you not to give up?

But am I right in thinking you have thyroid issues? I'm always told mine is fine.

Very I tested in your experience with Nick Paney. Did you see him himself? I did call them back in march - but id have to see one of his staff. But was told he would get involved if needed. Id love to hear how you found them? Very open to going there.

I don't understand when you say you moved your sex hormone care out of the UK???


But you have made me step up today. I've kind of slumped into submission - as I'm having one of the worst months ever. But I'm going to make lots of appointments now.

I'm booked with an ME /MCAS /dysautonomia specialist - I want this all ruled out or in, once and for all.

I'm booked with a therapist who deals in chronic illness and trauma - as I'm now at rock bottom.

I'll continue with neurologist - no way will he refer me elsewhere as he thinks ally issues are Central sevsitization. And I've to 'stop chasing'. But he has absolutely no concept of the hormonal triggers.

So. Endocrinologist. Possibly should also go to Nick Paneys clinic. Thoughts?

 

[CrispyChick]

Oh...nick paney has virtual consultation available himself in Jan...

Ok. Is this where I want to go??? As well as pursuing endocrinology? Or start with Dr paney?

I must say I cannot tolerate ANY HRT. It kicks off my extreme poison. So I don't want to waste my money if he's all about HRT with no appreciation of wider issues/help. It's £395 for 30 mins. 30 mins. Wow. I'll have to talk fast!!!!

I already have Dr Tina peers clinic or Corrine Fletcher on my radar as drs that help you tolerate HRT if you have MCAS. But going to see the ME / MCAS specialist first.

I just want answers and a firm diagnosis. 

Sorry. Big asks here. Xxx

[AmandaJR]

Crispy, I didn’t see Prof Panay, I wish I had. I think it’s worth seeing him simply because he’ll have the experience and professional contacts to refer you to, including Endocrinologists. I think he’ll assist to get you to the right team under the NHS which is what finally happened to me. Trying to get a diagnosis when you’re not ‘textbook’ can easily cost tens of thousands of pounds and/or years of our lives - as we both know.

Or can your GP refer you to a different endocrine hospital?

I would also write to the Endo department that refused to see you.

My issue is not thyroid, it’s taken 2 years to confirm this via extensive tests. My symptoms are similar to hyperthyroidism, my metabolism runs 6 times faster than it should. This probably explains why transdermal HRT wasn’t enough. My HRT care is in the US, I’ve been stable since June 2025 and am trying to reverse bone and joint issues/stop them getting worse.

I so hear you about being slumped into suppression, been there because it’s all been far too much. We can’t stay there for long.

How helpful is your GP?

[CrispyChick]

Thanks Mandy.

My GP is incredibly helpful. She'll help where she can. I've left a message for her today asking for a second opinion by a different endocrinologist.

I did get seen by the last one, but he simply said 'i see lots of people like you, bur I can't help you'. I do recall him saying I could seek a second opinion.  So that I will.

Right. Ok. So I think you're absolutely right. I should see a sex hormone expert. I don't share your optimism with him directing me to specialists back in the NHS - but his own expertise will be useful. All 30 mins of it. Sigh.

Who did you see that finally helped guide NHS endocrinology???

What an absolute nightmare you too have had.

I can't believe you are having to use the US for your hrt support. 

I think I'll go ahead with Dr paney, whilst considering and weighing up my endocrine options.

I'm going to check everything I've got at it one last time. Cause I'm going nowhere like this. This is not normal perimenopause. 

Thank you x

[laszla]

Dr Boon Lim is amazing, he gave me back a life, not the one I had lost but one that I could make meaningful and on good days enjoy.

I have severe dysautonomia due to a brain injury and untreated long duration CSF leak at the age of 34, and had been completely abandoned by the NHS, whose only management plan was to go away and spend the rest of my life lying down.

With miserably low blood pressure and a heart rate of around 38-42 I was almost completely bed bound, living a syncopal, supine existence.

Dr Boon Lim advocated for me to get a Biotronik CLS pacemaker which was fitted on the NHS locally, which has made a tremendous difference as well as other treatments, that I can now sit up in reasonable comfort, go out, and exercise at the top of my ability without further deteriorating my resting heart rate.

He is both knowledgeable and compassionate, qualities often lacking in medical professionals, and it is very rare indeed when the two co-exist.

For me it was worth every penny.

Of course, totally worth it. I had read good things about him but it's something else to hear directly from a patient. And amen re rarity of knowledge coupled with compassion in health care

[laszla]

Thanks Mandy.

My GP is incredibly helpful. She'll help where she can. I've left a message for her today asking for a second opinion by a different endocrinologist.

I did get seen by the last one, but he simply said 'i see lots of people like you, bur I can't help you'. I do recall him saying I could seek a second opinion.  So that I will.

Right. Ok. So I think you're absolutely right. I should see a sex hormone expert. I don't share your optimism with him directing me to specialists back in the NHS - but his own expertise will be useful. All 30 mins of it. Sigh.

Who did you see that finally helped guide NHS endocrinology???

What an absolute nightmare you too have had.

I can't believe you are having to use the US for your hrt support. 

I think I'll go ahead with Dr paney, whilst considering and weighing up my endocrine options.

I'm going to check everything I've got at it one last time. Cause I'm going nowhere like this. This is not normal perimenopause. 

Thank you x

Just to say that I was Panay's patient at Chelsea and from what I saw of him, even though he is course a hormones specialist, he is at the same time very open minded in terms of a holistic approach, mindful of other disciplines etc. so I would think able to advise you or point you in the right direction even if hormones are not for you currently

[CrispyChick]

Thank you. That's a tally very reassuring laszla. Hopefully he has some ideas rather than an 'i can't help you attitude'