Uk potsies what doctor do u see?

[merkat30]

I need some help my currant doctor is struggling with me i need new one or extra one to help him help me any help name number would be sooo great i dont no what else to do google few try get app but couldnt get though 

[bombsh3ll]

The top dysautonomia specialist in the UK to my knowledge is Dr Matthias in London. I haven't seen him personally but I may do, if craniocervical instability/settling is excluded for me/ I need more supporting info from an autonomic specialist in order to release my pension / cannot get to see Dr Grubb (US, would be my number 1 choice if money no object and physically able to travel). Unfortunately he only practices privately. 

I have also seen Prof Newton in Newcastle where I went to get diagnosed, and UCLH in London where I went for further autonomic tests. Neither were able to offer me any treatment but to be fair I had already tried everything except methylphenidate and IV saline myself (I worked as a GP). 

I hope you manage to find somebody willing to try to help. Sometimes, a doctor who doesn't know much about the condition but cares & is willing to learn and try different things with you is worth far more than someone supposedly specializing in dysautonomia who isn't willing to listen or think outside the box if the first one or two meds don't help. 

B xxx

[CarolS]

Where are you in the UK? Have you looked at the list of doctors on the POTS UK site? My daughter has seen Dr. Jamie Fulton at Derriford in Plymouth. We liked him a lot. He's just come back from a 4 month leave, so I imagine he's quite backlogged. He's NHS and doesn't do private as far as I know. 

 

[merkat30]

thank u all for replying . I have seen dr Julia newton and dr gupta I am looking for a doctor to help as don't seem to react good to anything they all send me backwards the drugs it really scary . I am in the north of uk

 

[bombsh3ll]

On 5/11/2019 at 3:29 PM, Lavender90 said:

thank u all for replying . I have seen dr Julia newton and dr gupta I am looking for a doctor to help as don't seem to react good to anything they all send me backwards the drugs it really scary . I am in the north of uk

 

How did you get on with Dr Gupta? Dr Newton diagnosed me but couldn't help with treatment, just suggested things I'd already tried. 

B xxx

 

[merkat30]

He doesnt really no what to try with me now he helped one lass i new tho she alot better .

[andybonse]

Prof Mathias is now retired even from private practise. 

I went to the autonomic clinic in London on the NHS for repeat testing and it's just the same treatments and advise.

Basically they tell you that you have it, try the treatments and if they don't work for you that's it. Sucks, but until the research shows a clear cut cause, then we will have to wait!

I hope this antibody research hurrys up, I want to try IVIG but they won't just give that out like candy :(! lol.

Luckily fludrocortisone is awesome for me, my BP is like 130/80-150/90 depending on position, mostly high when standing, none hyperadrenergic though. So they wanted me to reduce up, but I'm not it's the only thing keeping me going. Plus my bp was the same before it, which is hard to get them to believe haha.

[Goldfinch]

To andybonse, 

I just read this and saw that your BP increases on standing, so does mine! I am already diagnosed with hypermobile EDS and am on antihypertensive whilst I have the BP side of things investigated. But the gp I saw was shocked when it increased on standing, said they had never seen it. From googling I may have mild hyperadrenic pots if that is possible, as I have loads of quite disabling Pots symptoms but my heart rate doesn't always go up by 20-30, my symptoms seem to vary day by day. Anyway if you see this, any info would be appreciated, thank you! I'm in the UK. 

[Joseph]

I see Dr Jamie Fulton at derriford definitely the best and most understanding doctor I see and is so down to earth and very approachable. He does his absolute best for his patients and is so dedicated to his job.

😁

[merkat30]

So sorry for extremely late replys it never showed up was a reply .. yes I still same way and no further forward actually more unwell it really does sound like u have what I have goldfinch . That lovely to see u have a lovely helpful doctor soo rare Joseph 

[Pistol]

On 5/22/2019 at 5:55 PM, andybonse said:

Luckily fludrocortisone is awesome for me, my BP is like 130/80-150/90 depending on position, mostly high when standing, none hyperadrenergic though

@andybonse do you mean your BP is this high on Fludrocortisone? I am surprised they give this med to someone with high BP.  It is meant to constrict vessels - and the high BP is usually caused by excessive vasoconstriction.  A BP of 130/80 - 150/90 is not well controlled!

What do you mean when you say your BP is high on standing but not hyperadrenergic? An increase in BP upon standing is highly suggestive of HPOTS! 

 

On 6/20/2020 at 11:24 PM, Goldfinch said:

But the gp I saw was shocked when it increased on standing, said they had never seen it.

@Goldfinch - an increase of BP upon standing is highly suggestive of HPOTS. I have it and for me both HR and BP go up upon standing. Did you have a TTT? If your GP simply took Vitals in the office upon standing it is important that they be taken at 1, 3, 5 and 10 minute intervals when standing. Often in POTS the HR does fluctuate within the first 10 minutes and stabilizes within 10 minutes. That is why possibly your HR did not increase to 30 BPM.  What antihypertensive do you take if you don;t mind me asking?