POT’S ... what specialist can diagnose this? X

[44Maxine]

POTS

Hi all I’m just wondering if anyone can help...

I’ve been unwell for over 12 months now, the last 6 months really bad like practically bed bound, I’m pretty certain I have POTS, but my Doctors just won’t listen and are refusing to refer me anywhere, I was just wondering what specialist would consider investigating this for me as on Pots forums I see a lot of people say Nuero & others cardio etc... I’m literally at breaking point right now so just need to get seen to as soon as. Unfortunately I can no longer go private as had to close my business etc.. so has anyone else had trouble trying to get referral, is there a complaints via NHS I can speak to regarding getting referred to the right specialist?..

Thanks in advance xx

[Marz]

Not sure who you would see ... In your post of 4 years ago it was suggested by a few members that you need good levels of B12 - Folate - Ferritin - VitD. Did you have them tested and if so do you have the results. Low Iron could cause your symptoms as there is inadequate oxygen reaching the brain and the heart is doing its best to produce more ...

[44Maxine in reply to Marz]

Thank you, yes I had these tested and was doing fine for almost 3 years and then literally just crashed, I was getting B12 injections but they barely made a diff, I’m sure I read somewhere there’s a test to see if my body is absorbing it? X

[Marz in reply to 44Maxine]

Am not sure of a test to show if good absorption is taking place - but testing Homocysteine and MMA can help. If high in range it could indicate B12 is low in the cells ...

[44Maxine in reply to Marz]

Right okay that’s great thanks I will start with that xxx

[Marz in reply to 44Maxine]

I think they could be hard to obtain on the NHS ...

[44Maxine in reply to Marz]

Yeh I’m not even gunna bother asking them lol, just Gunna truly do everything private xxx

[HLAB35]

Cardiologists in the larger city hospitals can test for P.O.T.S using a tilt table. Some GPs have heard of this and can refer you. Call the British Heart Foundation helpline if you need backup. It is more likely in people with mobile joints, but not exclusively..

bhf.org.uk/informationsuppo...

As Marz said it could easily be a problem with b12 and I suspect low electrolytes (don't take diuretics unknowingly - you need good salt levels). Start taking vitamin c with an electrolyte mix of minerals to see if this improves things.

[44Maxine in reply to HLAB35]

Thank you, ive since had some blood pressure monitoring done & my bp increases on standing which is when I get my symptoms they done 2min, 5min, 10min etc... does it sound mad that when I drink a lot of water on a gud day I feel worse for it for days after x

[HLAB35 in reply to 44Maxine]

Not at all.. orthostatic intolerance is clearly an issue for you. It may be worth getting your own BP monitor to keep an eye on things. Also, get some urine and blood work done to check electrolyte levels.

I have experience of my Mum having a similar problem, but this was because she was on diuretics. My Mum was passing out all over the place until they realised her salt levels had hit the floor... she had had no signs of water retention in her limbs despite her high BP, so there really was no need for the strong diuretics and she was drinking lots to compensate for the fact that she was peeing all the time, but a locum doctor who'd prescribed these pills had also told her (without backing it up or checking her history) that it was generally advised to consume little salt with high bp. It cost the NHS far more in sorting her out from all her falls than it would have done to reduce her dosage by doing some urine and blood tests first!

[44Maxine in reply to HLAB35]

Wow that’s crazy, I get a lot of water retention tho... okay I’m going to order some tests for electrolytes to see if I can start supplementing something thanks so much for that info xx

[HLAB35 in reply to 44Maxine]

Definitely worth getting the balance right then... The problem with POTS is the difference in BP between lying down and sitting up, ditto with sitting and standing. You will need an ECG and bloods and urine tests done by a POTS specialist. They may need to rule out any floppy valve heart issues as well with an Echocardiogram.

[Hidden]

There is a POTS charity you could ask I believe they have a list of consultants Good Luck

[sandywandy1]

Hi,

After elimination of other causes such as low iron, B12, cortisol levels (GP/Endo) next step might be 24 hour holter monitor to test blood pressure and heart rate over 24 hour period. Often GP can request this at local hospital. This would give a picture of what your body is doing and might help GP / relevant consultant to understand.

Results may give GP evidence to refer.

Autonomic dysfunction, is a specialist area. As per other reply tilt table test is used to observe changes in body supine and standing and other situations.

Some cardiologists and some neurologists deal with PoTS. There is a specialist autonomic unit who are neurologists at the National Hospital for Neurology and Neurosurgery in London. Waiting times are long. Hope that helps.

[sandywandy1 in reply to sandywandy1]

See potsuk.org for list of doctors

[HLAB35 in reply to sandywandy1]

Hi there, just for future reference, you can edit your original response by selecting 'More' and the down arrow to include links etc. (one of the Admin team helped me with this a while back) as the original poster will not be alerted to a response you make to your own reply if you see what I mean

I'd completely forgotten about the holter monitor test, but it's now coming back to me that my niece did something similar .. although I am not sure whether they do that before or after the tilt test.. I can check with her mum, but it probably depends on the specialist.

[sandywandy1 in reply to HLAB35]

My GP arranged a holter monitor test at my local hospital and reviewed the results before referral to the specialist. NHNN do a 24 hour holter monitor test and tilt table test as part of their diagnosis and also when monitoring for PoTS.

[HLAB35 in reply to sandywandy1]

Interesting that that both Neurology and Cardiology are looking at it. It was definitely a Cardiologist that investigated it in our family (probably due to there being other heart problems in the family). Hope things are easier now you have a proper diagnosis.

[sandywandy1 in reply to HLAB35]

Thank you. Helpful to have a diagnosis -some people wait years. I hope Maxine can get to the bottom of it too.

[44Maxine in reply to sandywandy1]

Thanks for this info, I’ve recen just had the 24hr monitor awaiting results ... I didn’t realise my respiratory dr was cardio respiratory so they arranged it, I also had cortisol levels checked which are in the high range I got these done privately tho, maybe i’ll Upload them to cushings forum and see whether I shud push to see endo again, thank you xxx

[HLAB35]

I've just updated my original reply with a link to the BHF website which also has a link to

potsuk.org/

[44Maxine in reply to HLAB35]

Thanks so much x

[Shazamm]

Dr G Kings College Hospital London is a Pots specialist . He is a cardiologist and he sees nhs patients , don’t know what the wait time is for an appointment though. Good luck

[helvella in reply to Shazamm]

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[Shazamm in reply to helvella]

Sorry

[44Maxine in reply to Shazamm]

Thanks you xx

[klr31]

I used to g

[klr31]

I used to get dizzy standing up when my thyroid meds were too low. Since raising levels I've been fine.

Karen

[44Maxine in reply to klr31]

Thanks for this, I also have Hashimotos but my dr’s won’t treat it saying I’m still in range, and I didn’t see my endo again after being diagnosed as he stated were not gunna treat you & suggested I get psychiatric help for the symptoms lol can’t even deal with them at this point x

[klr31 in reply to 44Maxine]

That's awful. Can you change doctors? Have you got your blood test results? You need to insist on a trial of thyroxine as it may very well help you and your symptoms.

Karen

[44Maxine in reply to klr31]

I think I most definitely need to change Drs I’m totally exhausted with them tbh, yes they last tested my thyroid in January

Thyroid function test

Serum TSH level 3.1 miu/L [0.2 - 4.0]

Serum free T4 level 14.9 pmol/L [10.0 - 20.0]

[klr31 in reply to 44Maxine]

Yes, within range but your TSH is quite high and will probably keep going up until they agree to treat you. Meanwhile you have to battle the symptoms of an underactive thyroid gland.

Karen

[44Maxine in reply to klr31]

Exactly, they said they would treat when it gets above 3 then refused too...and my most dibilitating symptom is brain fog I just feel on another planet with it it’s so distressing, it’s not just the memory loss and confusion I feel completely detached from reality with it, but it only starts after 6pm every single day ... I wonder do you know of a private Dr i shud maybe see for treatment instead of the battle with the Drs ? Xxx

[klr31 in reply to 44Maxine]

I suppose it depends upon where you are in the country and I don't think we are allowed to name doctors on here. You could look at Thyroid UK site as I believe they have a list of private doctors and there may be one in your area. Good luck.

Karen

[44Maxine in reply to klr31]

Thanks I will take a look xxx