Log in
Scleroderma & Raynaud's UK (SRUK)
7,665 members3,577 posts

Private or NHS diagnosis? Due to IVF.

Hi,

Both me and my mum have always suspected we have mild Raynauds, but it has never bothered us enough to get diagnosed. I think I would only have primary Raynauds.

However I'm due to start IVF, and my doctor says she needs diagnosis before I can proceed. We have waited such a long time, I can't bear to wait the extra 3 months (she estimated) for diagnosis through a rheumatologist via GP referral. I was thinking of just doing privately.

Does anyone have experience of a private hospital diagnosis? Is it faster? How much roughly does it cost? What tests will I need? Where should I go for private tests. I rang Blackheath hospital and apparently the secretary of the consultant said there was no test for Raynauds!

I believe only Secondary auto-immune Raynaud's would affect IVF. As the immune system attacks the embryo and it won’t implant in the womb. Is this the case? How do you get diagnosed between the Primary and Secondary?

My symptoms are white to blue fingers and toes, and cold nose. Numbness and frequent pins and needles when only lying on my arm for a short while. It was worse when I was at school (being forced into the cold), but despite my husband hating my cold feet and hands it doesn't really bother me. I tend to layer up outside so only get pain, when I'm out for more than an hour in very cold conditions. Could this just be bad circulation? I do exercise frequently and am very healthy. I'm not over or underweight. I've been told I have small veins in my arms (anything to do with it?)

Sorry for all the questions, any help or advice would be really appreciated.

12 Replies
oldestnewest

My wait for a Rheumy was 11 months, via 3 other Consultants, each 6 to 8 months on the waiting list. I have severe Raynaud's in my feet and mild in my hands. The cost for my Rheumy privately was £180 an hour.

Reply

Thank you, was your 11 months on NHS or private?

Reply

After waiting 10 months, so about 20 months in total I paid privately and saw a Consultant within 5 days.

Reply

Can't your gp just diagnose it and then send you for a blood test to check your just primary? Would be quicker. Someone else may know which tests you specifically need ANA rings a bell for some reason.

Reply

ANA is Scleroderma - Raynaud's on it's own does not show up in blood tests.

I questioned my GP about diagnosing Raynaud's and all he said he knew exactly what Raynaud's and everyone is different.... (I was furious!) Though he'd never looked at my hands or feet, or the photographs I had taken to show the change in colour etc, and I'd had photographs taken at the Dermatology Clinic 11 months earlier. For me the Dermatology recognised it as Raynaud's but my doctor wouldn't treat me for it until a Rheumatologist actually diagnosed it.

Reply

Exactly so if you show up for nothing else you will be primary.

Reply

I had a lot of fertility treatment, although not IVF, although i was about to. They didnt worry at all about my scleroderma diagnosis, and my rheumatology consultant said it was fine to go forward, they only worry if there is lung involvement.

Reply

A prime example of a two tier system of health. Yes, you will get seen quicker if you go private. But do you also know that they are discharging many NHS patients back to GPs from the specialist centres. Those same specialist centres have their consultants working privately. So an NHS facility is closed down and the only acceptable alternative to get treated is private.

Well what difference does it make if you get treated some might say?

Well balance this with the situation that private healthcare will not cover you for many chronic conditions. So as long as its all in check you will get seen and get the diagnosis. But if the condition gets more serious needing more expensive support the private option will not be available to you unless you self fund.

Thats why conditions as potentially far ranging and potentially serious as this should be recognised as being worthy of effective treatment on the NHS.

Reply

If were you I would go private, it's probably quicker. Go on to the NHS Choices site and see if there is any help there. I have Raynaud's. Was diagnosed by private Dr. in Africa. There you don't have to wait too long. The GP here just looked at my hands and said I had Raynaud's. Didn't know there was a blood test you could have. There is an info. pack that Raynaud's Site will send you to take to your GP. Just go on the site and order one. Hope you find help soon and my prayers are with you for IVF. god bless.

Reply

Thank you everyone for your advice. I have booked a private appointment so hopefully will get tested soon. THANK YOU!

Reply

I was diagnosed primary reynauds 5 years ago by a rheumatoid specialist on NHS after being refered by my doctor. The process was not quick and i had to have 2 appointments, which was fine as i didnt need a quick diagnosis at the time. I had various bloods taken, xray of my hands and a full body exam. This was to rule out other types of arthritis and reynauds. Good luck and i really hope you are successful with your IVF treatment - i am just staring my ttc journey.

Reply

The answer to your question re the way to differentiate between Primary and Secondary Raynaud's is to request an ANA blood test (Anti nuclear antibody). This does not tell you that you have Raynaud's but if it comes back negative you most probably have Primary (benign) Raynaud's but if it comes back positive then you would need to be referred to rheumatologist for further tests to ascertain if you have an underlying problem.

Get a good NHS rheumatologist although some do private clinics. However you could pay up to £200 for a consultation.

Reply

You may also like...