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[CrispyChick]

With the realisation that all my symptoms are most likely hormonal. 43 with 2 years of extreme dizziness, nausea, brain fog and general malice.... Where do I go for help?

I have been down a wild goose chase with my gp preferring to have me investigated for all sorts of sinister diseases, rather than consider hormones. In my desperation I have paid to see an ENT consultant and paid for extensive vestibular rehabilitation in the unfounded knowledge that I had some strange dizzy disease. Nothing has worked......perhaps obviously now.

So where do I get help with my hormones. I feel so bad that I feel really ill. I found a private clinic who do hormonal testing and analysis then focus on the bioidentical treatment - is this worth the money? I am at my wits end.

I have a gp referral to the menopause clinic, but no sign of appointment yet and they akready told her they didn't think my symptoms fitted with meno.

Where can I go to get help??? Thanks in advance x

[dangermouse]

Both the London Hormone Clinic and Marion Gluck clinics are reputable in the central London area for bespoke hormonal treatment. It can be pricey but affordable when you divide it over one year, particularly in terms of the service you get if you compare it to what you'd spend on NHS prescriptions.

They will also prescribe some HRTs that you can get from the NHS if they are enough, so very moral.

[CrispyChick]

Thank you. I found a clinic with a Dr trained by marion gluck clinic in Scotland.... So might try that.

London is a bit too far.... Even in my desperate state.

[Mary G]

I agree with dangermouse's recommendations but you might want to sound the clinics out before committing to an appointment.  Find out if they offer standard as well as bespoke HRT.  It's important to have as much choice and flexibility as possible.  I have been using standard oestrogen and testosterone with bespoke progesterone for well over a year and it's working extremely well.  It is worth every, single penny in my opinion and I would forego something else to pay for it in order to feel well and sane.   

From reading your post it sounds liked your problems are hormonal so it's great that you are fast tracking your way to some professional advice from a hormone specialist.

Good luck!

[luna66]

Hello there

I'm with Professor Studd's practice (in London) and have been very happy with the level of knowledge and understanding of the issues, although have just had problems with the progesterone side of my HRT that I was prescribed and am dealing with the consequences of that at the moment. Hmmm... I understand there's a good clinic at King's College Hospital too. I just had a polyp treatment there and thought they were fantastic. None of this is perhaps helpful if you live far away from London.

I like using Estrogel because I have some level of control over how much I need/use.

On bioidenticals, from what I understand Estrogel and utrogestan are bioidentical so it's not necessary to go to a specific bioidentical practitioner. I also understand that bespoke treatment (such as Gluck prescribes) are not all they're made out to be because our hormones are fluctuating all the time and it's impossible to prescribe very precisely for that reason.

I'm not an expert 'though and there are people on here who know more than me and will be able to give you more guidance.

Good luck! x

[luna66]

PS I sought out a specialist clinic because I was getting terrible advice from my GP who seemed to know and understand absolutely nothing about it! Amazes me given how many women with the same issues must pass through that clinic...

[Dotty]

Where do you live CrispyChick?

I would look at somewhere like Dr Louise Newsons clinic and steer clear of the bio identical clinics. X

[Mary G]

CrispyChick, like luna66, I also consulted Professor Studd and successfully used his special 7 day 100mg low dose Utrogestan regime with Oestrogel and testosterone for a number of years.   He specialises in reproductive depression, PMS, PND and progesterone intolerance.   My problem was that I got to the stage where I couldn't take Utrogestan anymore. 

If you find a decent clinic where the doctors know their stuff, at least you can sit down with them and discuss your particular issues and they can give you some proper advice.   If they offer standard forms of HRT as well as bespoke HRT, at least you have the best possible choice.   You may never need bespoke HRT and they don't try to force it upon you.

If you are peri menopausal, you may need to change or adjust your HRT as you get further into menopause but again, this is something you need to discuss with a specialist.

My case is particularly difficult because I get on very well with standard forms of oestrogen but can't take Utrogestan or any form of synthetic progesterone because they destabilise my oestrogen and cause migraines.  What was I supposed to do?   I had to seek out a clinic that was able to prescribe bespoke progesterone, I didn't have a choice.   That said, the doctor I saw (who also works at an NHS menopause clinic in London) talked through other forms of progesterone with me but concluded that bespoke progesterone was the only option.  I'm post menopause and need complete hormone stability to avoid migraines so I'm probably in a very different situation to yourself.

Perhaps you could ring the clinic you have found in Scotland and find out what type of HRT they prescribe.

[CrispyChick]

Thank you all. The alternative is I could pay to see a gyno that specialises in menopause - that might be better then?

I'm Edinburgh. I wouldn't have thought it would be do difficult, but apparently so.

I just want someone knowledgeable to sort me out. My main symptom is vertigo and foggy head to start with. Gp didn't believe was hormonal, neither did meno clinic when she spoke to them!!

A really stupid question - but do we not need to see endocrinologist with hormonal issues? Would that be the wrong place to go?

[Dotty]

Hi if it's hormonal then you need to see a menopause specialist . A gynaecologist might not be a specialist in menopause.

I think an endocrinologist deals with other issues like thyroid x

[Foxylady]

Hi crispy chick, sorry you have had such a rough time with symptoms and various investigations etc. I sympathise with you as I was the same say Endocrinology as GP suspected it was my underactive thyroid (which had been well controlled on meds for years) then sent to Immunology and like you describe nvestigations for some pretty scarey things & trials of meds. This went on for over a year & I'd had 3 years of symptoms (aged 41yrs now, just!!) it was only when I went back to the GP and saw a trainee who actually listened to me that a peri diagnosis came my way (I had felt all along it was meno related but dismissed as blood results normal, if I'd known then what I know now). I am in Ayrshire Crispy chick and we have a fantastic menopause group locally which those registered with a GP locally can self refer to. I can PM you details of the lady that run's it as she has a facebook page and has started doing consultancy, she may be able to speak to you over the phone and advise you she is a nurse and doing meno training aswell as writing a meno book! xx

[CrispyChick]

Yes please foxylady.

I am on the NHS waiting list for meno clinic...... Just not sure they will take me seriously. Age seems to be an issue for us!!!

[Foxylady]

Most definately, I was very much discounted with my 'classic' meno symptoms due to my age. x

[EleanorB]

Hi,

I think I might be able to help but as you have already been down the vestibular route I realise I may come up against some scepticism.

Many years ago I suddenly developed ear fullness, dizziness, fatigue, terrible brain fog and after a while full blown vertigo attacks or just a sensation of movement when there was none. It was constant and my life was miserable. I saw 2 ENT doctors who tried to fob me off as suffering from anxiety. One briefly considered menieres disease but as I had no hearing loss discounted it.  This went on a for a year with no one able to tell me what was going in. Some luck meant I came in to contact with someone who had the same condition but knew what was wrong. I learned that ENTs do no further training in dizziness and know very little about it beyond the basics on labyrinthitis. GP's are also often extremely ignorant on the issue. Anyway, long story short, I ended up seeing first a neuro otologist (specialist in balance disorders) who initially diagnosed vestibular neuritis (labyriinthitis by another name.) When vestibular rehab made me worse I was sent on to neurology who diagnosed me with what I had,  migraine associated vertigo - aka vestibular migraine.

Not all neurologists are equal when it comes to migraine, it needs to be a specialism or they can be woefully ignorant about it, which is why the the fact you have seen a neurologist doesn't deter me from thinking you probably have this. My neurologist is a big name in the migraine field called Professor Goadsby - I am lucky in that he happens to be in the NHS hospital in my catchment. He would tell you that migraine is not a pain condition but a neurological condition that can impact different parts of the brain. It can also suddenly morph and change over time. You can be someone who gets the headaches who suddenly becomes someone who gets vestibular symptoms.  People can have both pain and vestibular symptoms. The symptoms can be constant or intermittent. It is a diagnosis of exclusion, there is no test that will tell you you have this. Once other things have been ruled out, then it is highly likely the cause is migraine, particularly (although not a necessity) if you have a history of other types of migraine.

Have a look at a support group on facebook called, rather strangely as it's for anyone, not medical professional, 'vestibular migraine professional.' You will find a whole load of people with the same symptoms as you. The condition can be managed with daily migraine preventatives. I spent many years on propranolol mostly symptoms free if I managed my lifestyle, having been dizzy previously for 2 years straight.

With menopause the propranolol stopped working and my migraine came back, although more pain based than dizziness, managed now with occipital nerve blocks which work better for pain.

I would urge you to do a google search on migraine associated vertigo. I saw your post and wanted to help as I remember the despair of not knowing what was wrong and feeling that way. Hormones may play a part in this but the likelihood is if they do it will be because they have stirred up an already existing migraine condition.  I take HRT which also helped when I got crippling pain based migraines when my meno kicked in. Although progesterone can be very rough on migraines which is why you might have had some struggle with introducing hormones. I noticed you mentioned migraines in another post which is what made me pretty certain this is probably what you have. You sound just like I did and indeed all the people I have got to know on the migraine associated vertigo support forum over the ensuing years.

[CrispyChick]

EleanorB - thank you so much for taking the time to reply.

I am open to other diagnoses. I just wabt to get better. I have myself recently looking into vestibular migraine.

Just to be clear though, I have never suffered from pain migraines. The term 'migraine` I used previously was in relation to severe hormonal withdrawl headaches. It was the withdrawl from the combined pill causing them.

I'm not too keen on the vestibular migraine ideas, as there don't seem to be many cures 🤣. I'm happy to talk to my gp about this though.

A few things don't make sense. I have this constantly, often more like motion sickness. Every ing I read says vestibular migraines come and last for hours, up to 72 hours. That mean s I have had a migraine for 2 years???

It calmed down a fair bit on cerazette, mini pill. Since swapping to a combined pill, it has come back with force. The mini pill was giving me very low moods and pmt though, so not a good solution.

So, are you saying propranadol is a good med to try out? Would I need to see a neurologist, as there are no cures, it seems a little pointless.... 🤔.

I do appreciate your input. As of today I have upped my dose of estrogen in combined pill..... If this doesn't work, perhaps I should push to try something for vestibular migraines. I just feel bamboozled!!!