Do you think I can push for my Rheumatology referral to be dealt with sooner? UK

[Coleyyywo]

Hi

I have been waiting what feels like forever to be referred to a rheumatologist. I have been unwell for a solid 10 months, my doctor initially said they couldn’t refer me as I was pregnant, so as soon as I gave birth my doctor referred me, around the same time she noticed a lump in my neck, so I was also referred to ENT doctor urgently, the ENT doctor wasn’t worried about the lump and said they think it’s a branchial cleft cyst and they said they don’t think my other symptoms are related.

So a month after my Rheumatology referral being sent, the consultant cancels it because they want the issue with ENT dealt with first. And if symptoms persist then to ask for referral again.

The ENT doctor said I need surgery to remove the lump so I had to wait 3 months for the surgery to then be re-referred to Rheumatology, I asked my doctor to put the referral as high priority as they cancelled my referral back in October, she agreed and said it shouldn’t have been cancelled in the first place as the lump was not related,

Anyways I rang up to check on referral and they said the consultant has reviewed it and put it as routine and not high priority. They said the waiting list is very long. I understand the NHS is extremely busy but I’ve been waiting for so long for this referral and have been suffering so much, I feel very unwell and I have a baby to look after and I’m due to go back to work in 4 months. I’m worried what ever is going on in my body is going to cause long term damage, I’m just waiting for so long.

Is there anyway I can push for my referral to be seen more urgently? Or do I have to wait another how many months and hope for the best?

Thank you so much

[Batty1]

Hi Coleyyywo, what issues are you currently having that you want to see a Rheumatologist for?

[Coleyyywo]

Hello, I’ve been suffering flu like symptoms for the last 10 months, they are intermittent I have okay days and not so good days and awful days. This happened a few years ago but it completely disappeared then returned out of the blue. I am really bad at explaining the symptoms but it feels exactly as if you were just coming down with the flu and a horrible feeling in my throat

[Coleyyywo in reply to Coleyyywo]

Batty1

[Batty1 in reply to Coleyyywo]

Ok, So no joint issues just a flu like issue I wonder if a rheumatologist would be able to help with flu like issues.

[Coleyyywo in reply to Batty1]

Yes this is what I’m worried about, im worried once I finally get seen by the rheumatologist that they won’t be able to help and refer me elsewhere, although I did read a rheumatologist are good for mystery illnesses? I really believe my illness is hormone related as it peaked so much worse when I was pregnant.

I want to look into going private, do you think it would be a waste of money paying a rheumatologist? As it might not be their area

[Batty1 in reply to Coleyyywo]

Can you tell us exactly what issues your having that makes you want to see a rheumatologist?

[Coleyyywo in reply to Batty1]

So back in October 2018, I started having having one and off flu like symptoms, feels like I’m coming down with the flu, the general unwell feeling and sore throat. It completely went after a month, then returned in June 2019, was exactly the same symptoms but lasted longer approx 3 months, then disappeared out of the blue again.

And then it returned again April 2021, but much more severe symptoms almost everyday and still here now ( I was pregnant last year)

[Batty1 in reply to Coleyyywo]

Were you tested for covid ?

[Coleyyywo in reply to Batty1]

Yeah I had a antibody test, the thing is it started 2018 when I don’t think covid was around. I’m worried a rheumatologist may not be able to help but me GP has referred me, but I’m going to look to go private as the waiting list is extremely long

[Batty1 in reply to Coleyyywo]

2018 with flu like symptoms… Horrible!

Have you had your thyroid levels check along with vitamins?

[Coleyyywo in reply to Batty1]

I was wondering about my thyroid, I’ve only had my TSH checked, my levels were 1.6 in 2019, then went up to 2.5 July 202, then down to 0.4 in November 2021.

I heard TSH isn’t reliable alone, so I have ordered a at home finger prick test to do a a more comprehensive thyroid check

Do you know if thyroid symptoms can come and go like mine has?

[Coleyyywo in reply to Coleyyywo]

And had vit D, B12 check which were in range

[Batty1 in reply to Coleyyywo]

Need to have TSH, FT4, FT3, T3 and Antibodies tested ….. do you know if you have Hashimoto disease?

[Coleyyywo in reply to Batty1]

I stupidly ordered the cheaper test online and I don’t think it included the antibodies, hopefully can find a test to get those done separately. I have never been told I have Hashimotos, but it’s something I’ve wonder about. Is hashimoto something that comes and goes? Thanks

[Batty1 in reply to Coleyyywo]

Yes it causes hyper and hypo symptoms to come and go …. Type in search bar Hashimoto symptoms Im sure lots will pop up.

[Valerie58 in reply to Coleyyywo]

My mum used to have something like this . She was diagnosed with palendromic rheumatoid arthritis. It is quite rare. She lived to be 92.

[wiserlady in reply to Valerie58]

Ive looked up the symptoms for this and it says joints etc nothing about flu like symptoms, also that it attacks for a bit and then goes away and comes back.

[Valerie58 in reply to wiserlady]

Its the achy bit thats like flu. This ladies seems to come and go. It does attack. Its not like general arthritis

[wiserlady in reply to Coleyyywo]

I am struggling with the same thing and have been for over a year. It's very irritating and debilitating. If I say anything to to the doctor they say nose sprays and/or inhalers etc. But these very often just make it worse. If you return they say ear nose and throat, which for me means a long journey and in the past has been totally a waste of time, simply giving you the same nose sprays etc you could get delivered by the chemist just around the corner with a quick phone call to your normal doctor. Or suggesting an operation, which is very painful, a waste of time and pointless. I think it is to do with the immune system not working as it should and that is the problem then. I think your rheumo will say it is fibro but they cannot do anything to help it other than pain killers or whatever. You may as well do your best to feel better now in any way you can. Maybe taking vitamin c, zinc, etc. I learned years ago that if you rely on doctors its a big mistake. They take ages and can make mistakes and over look things, they often just want to throw something at a symptom instead of getting to the cause to stop it happening.

[Coleyyywo in reply to wiserlady]

I’m sorry to hear you’re going through something too, it’s just awful, I cannot believe how much I use to take for granted in life. I also was not aware of how alone you can feel from being unwell, I’ve seen quite a few GPs who have honestly all been incredibly useless. I did use to think I possibly had fibromyalgia or CFS, however I just don’t suffer with the fatigue at all and that seems to be such a key symptom.

I hope you get some answers soon

[wiserlady in reply to Coleyyywo]

Ive gone as far as I can with doctors. Waste of time and money. We are self employed and dont get paid when we dont work. Its also a long journey to the hospital. Each time we have to go its half a day or more disappeared and we both lose a whole day unpaid at work. Yet they never actually help. I told my rheumo about my symptoms, brain fog, fatigue, pains in shoulders and arms, nausea, stomach, right eye lid droopy, tingling lower legs, shooting pains feet and hands, pain and difficultly with using wrists etc. After a long talk he says he thinks it is fibro of chronic pain. How on earth does chronic pain cover a droopy eye, nausea and brain fog? Years ago I had strange symptoms and told my doctor I thought it was an underactive thyroid. The surgery kept insisting I was wrong, but I pushed and pushed and got blood tests and it confirmed that was correct. This has happened over other things too. You need to know your stuff, research stuff and have the knowledge, not rely on them! And research how to help yourself. If you just sit back letting them call all the shotsand believing everything they say you will be disappointed.

My partner got ill a few years ago. He was told he needed to hvae his gall bladder out. We were worried about this as we have a close person who had the same op and regretted it, hw now has regular bad diarrhea and other problems beause he had it removed. I researched it all and changed my partner's diet and when he went back to discuss whether or not to have the op and they did some tests they said they did not understand it but his problem had gone and there was no need to even consider it now. Help yourself.

[Valerie58]

Hi,The NHS currently seems overwhelmed. A first appointment privately often costs less than a £100. My husband has had to pay privately for heart tests and procedures. He was referred last April and would not have been seen until this March. I think we would have ended up as an emergency in A and E.

[Coleyyywo in reply to Valerie58]

Hi thanks for your response, I am looking into private as I just can’t carry on anymore waiting. I was hoping you may know rough prices, I know you said the initial consultation can be less then £100, but Do you know roughly how much the blood tests would be?

[Valerie58 in reply to Coleyyywo]

No. Private prescriptions are very pricey but many consultants send a letter to your GP. You could get more details from whoever hosts private consultants often a local Nuffield or Bupa hospital.

[wiserlady in reply to Coleyyywo]

Around our way its about £250 for a private consultation of about half an hour. The snag of course can be that they they insist on blood tests and all sorts which all cost a lot more. And further visits cost more. You are unlikely to find out anything in the first consultation if thats all you have. Most of the people I know only went private to speed things up. And had to go through the whole thing to get to their operation or whatever.

[wiserlady]

Doubt it, I know a lot of people who have been waiting a long time, struggling, some have paid to go private, simply because it speeds things up, they often get the same treatment and even the same consultant.