My GP (general practitioner) refused to explain my blood test which was for RA (Positive Factor) I got the feeling he didn't know how to read the test results.
Consequently every GP at my last (NHS Clinic) informed something different. They do not accept RA flare-ups.
Since my late 30s I have had swollen/painful feet and legs. GPs suggested its wear and tear (I know it seemed weird to be told at 30 something especially since I did not live a fast life or sporty one) while some said it looked like an infection. Now I am more or less homebound since I am unable to wear shoes and walk when there's flare-up- and the last GP would not accept my request for a GP home visit. I also have trouble with kidneys whereby I am not frequenting the ladies as often as I should however when I do, it is dark. None of the GPs have looked at my urine or considered referring my case to a RA specialist (one GP did refer me to RA Specialist but another GP at the same clinic cancelled it without notification to me)
I would appreciate advice on the matter and do I have anything to worry about? Does RA appear one year and disappear another year? The chemist that checked out the blood tests said its criminal how the GPs have behaved towards me.
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ANNI4
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It really feels bad to hear how the patient is left out of the care process. It seems that mothing has really been explained to you☹️ and still it is your body😡What you need to know are the results of your blood tests, and you must insist that they are explained to you, its your right. The RF possitive result in it self only means you have a probability of RA. Together with anti CCP another important diagnostic tool raises the probability. If you have other inflammation markers raised in your blood and joint symptoms then the probability of RA is high.
Thank you for your reply and advice. Yes I have since registered with a new clinic and will try to request a referral (the previous clinic didn't approval of referrals so I hear because of money leaving their clinic, something about NHS funding clause) This previous clinic also failed to inform me that I have hypothyroidism. I have deficiency in Vitamin B12 since years (the same GP said I had RA, said I could only be treated to the injection type of VitB12 which I was severely allergic to...no apologises for this. I was told years ago that I had 2000 plus allergies and it would be a trial and error method of finding out what is and what is not a problem for me...basically I should live in a bubble according the specialist. I decided to self medicate with pure vegan vitamin B12 ((Dr Best) which caused same allergic reaction. I never did do well with manmade vitamins/drugs. The GP who alerted me to RA etc left the clinic after referring me.
It does seem that you need to have a diagnosis made.
What other blood tests have you had done? Are they saying that you don't have Rheumatoid Disease because of low levels of either/or ESR or CRP tests? It is still possible with low levels.
You should either be persistently politely insisting on a referral to a rheumatologist, or if you feel this is out of the question, you could change your GP practice and start afresh.
Thank you for your reply and support/suggestions. The GP who said I had RA said "You have Rheumatoid Arthritis" So I replied well I don't have the symptoms (I only heard that the elderly got RA) not realising that swollen feet and sciatic in the hip for years and heart issues was RA symptoms, he didn't explain RA and he didn't really check my medical records that stated I had sciatic hip or falls due to balance issues since years...but this year (2016) I had another flare up of swollen feet/legs really bad in late Spring to Summer but the swelling and pain is not going away now that we're in winter making me wonder what is going on. (In summer I even thought it was my allergies acting up so I took a few Benadryl to quell the swelling to no avail) I sit a lot as a writer and I put it down to sitting and the heat of summer (England) - while others state I am overweight so my argument is why does the painful swelling come and go at random. The same GP failed to alert me that I also have hypothyroidism (I have all the classic symptoms including the heart problem associated with hypothyroidism) and again no treatment as yet....
I am sorry to hear that you are having problems with a diagnosis and that your GPs do not seem to be very helpful. I have put some links below to our articles on diagnosis and blood tests for you to look at:
Blood tests can be misleading as there is no one test that can absolutely confirm RA and some tests can give false positives. However, if you are experiencing other symptoms as well then it would be a good idea to go back to your GP surgery and explain your concerns. Is it possible to request to see the GP that did initially refer you? It may be helpful to keep a diary of your symptoms to show to them when you go.
If you are still unable to get a referral and you still feel that you may have RA then if it is possible you can see a rheumatologist privately to get the initial diagnosis.
You certainly seem to be getting conflicting messages from your GPs and cancelling an appointment without letting you know is at the very least, not very caring.
I hope the links help ANNI4. If yuo would like to talk in more depth please feel free to call the helpline:
Thank you for responding to my concerns here about RA Factor. After further checks from your links I would say given my flare ups I have the classic symptoms of RA/RAD since years that various gps in the past suggested it was wear and tire or weight gain etc. Now I notice swelling on the tops of my hands near the knuckles (puffy skin) I will say this about our current medical care gps are quick to say we have this or that but they are unwilling to do the diet elimination test, take a thorough medical history check- sometimes it feels they are just robots following a set guideline ...I had more joy from the chemist who knew how to explain the blood test results and suggested they would give free blood tests...I haven't been back because of flare up with feet/legs.
Also having years of vitamin b12 deficiency and vitamin d deficiency and anaemic (under medical care) I am surprised I make any sense. Is it possible to have RA and MS/Hypothyroidism (or Hashimoto) and what would be the blood test for these three together?
What self care measures can I take to prevent further flare ups? Non drug related.
These are all autoimmune diseases and it is possible to have more than one of them. In fact, many people with RA present with other autoimmune conditions as the secondary condition. Hypothyroidism is a very common one. This can be tested for with a blood test.
As for MS, I have put a link below to the MS Society as we are not the experts in this condition and would not know all the up to date information about tests for this condition:
Thank you for your suggestion. Yes I have since left that clinic as like most GPs they were united in their decision - fobbing me off and telling me its all in my head...and to disregard what the previous GP told me... the so in self defensive I said it wasn't I who said I have RA or the blood test results etc. I was going to report them to the medical council/NHS but decided I had no energy...a huge problem with fatigue. The GP who alerted me to possible RA issue etc. had also left that clinic...he left before I did.
Thank you for your suggestion. Yes I have and I hope the new clinic/GPs know something and are helpful or just simply polite (I find it stressful to say the least) I seriously think the NHS need to reconsider funding community clinics, since most are not fit for purpose.
I am sorry to hear you have had a rough time. I had the same problem with my GP. I was so stiff at one point I couldn't get out of the chair in her office.
I'm afraid you will have to be persistent. See another doctor. Do you have anyone who knows you well to go with you to appointment? Sometimes this can be helpful.
Thank you for your suggestion and support. I have decided to move to another clinic (I am a chronic clinic/doctor hopper) in truth I have zero tolerance to incompetent GPs with highly defensive attitudes especially when it comes to my health. I could never understand why everyone would go in twos a bit like Noah's Ark now I know its for back-up and to clarify what the GP says. Unfortunately no, I have to visit them alone which dose cause anxiety before, during, and after the appointment.
I wish I could change GP. I had a fantastic doctor for 25 years. Unfortunately I moved out of her catchment area. I now live in a village, and I'm stuck with them (they probably feel the same about me!). All other surgeries are out of catchment, and won't take patients out of area.
Find out if you can speak to the Health Authority they might be able to get you on the registration of different clinic...it use to be the case before 2015. Also asking PALS Patient Advisory Liaison Services to intervene on your behalf. Going direct to the Department of Health even implying this to the present clinic usually gets them to behave or change their long held policy on how they treat their patients (yes I forgot to consider this myself but I was feeling stressed at the time (10 October 2016) and stress can take away one's options.
However now I will ask PALS to consider intervening on my behalf or the Dept. of Health if I find no joy with new clinic. You're in my prayers
In 2010 my Rheumatoid Factor [RF 500] reading brought the comment to my clinical record 'All RF results should be interpreted with clinical findings and inflammatory indices. Dr. David Sinclair'.
Whoever he is, Dr David Sinclair should be held accountable for the fact that I, and probably many others throughout the UK, went untreated for a number of years due to our GP's inability to recognise clinical problems associated with RA. As a consequence, in the absence of a recommendation for subsequent re-testing, I continued to walk on a subtalar joint that had fused without surgical intervention circa 2007: by 2010 already three years too late for surgery for fear of nerve damage that might not remedy considerable pain and discomfort in walking but could have resulted in foot amputation.
If GPs rely on the findings of Dr David Sinclair concerning the possibility of a 'false' high RF reading, I fear there may be many generations suffering unnecessarily in the RA sphere.
Thank you for your story very informative and scary at the same time. Like you say its unhelpful to us the patient that GPs cannot read blood tests and relate the findings to us in a informative and professional manner rather than blurt them out like they did in my case followed by telling me its all in my head despite the fact I didn't suspect RA, I suspected LUPUS or the very worse MS given my symptoms over many years. And I just dare not inform that GP that I may have fractured my toe on falling over in the home hurting my whole right side...they would have blamed that all in my head too. They even viewed the bruised toe and never commented on it. They are teaching me a sense of humour!
My 'big toe experience' took place in bed - stretching! It felt as if the fleshy part of the toe at the top end of the toenail had been sliced by a serrated knife! I expected to see blood on the sheets but there was none: it took many months for the nail to grow - revealing a horizontal crack across the full width. It's taken over a year for the crack to reach the end of my toe, enabling removal by clipping, and no-one has offered an explanation although I mentioned it to my GP, a locum and the Registrar who gave my RA diagnosis. The locum had intended a blood test for gout but increased the number of ticks on the request when I relayed my youngest daughter's concerns that they'd been treating all my health issues in isolation. From personal experience she was convinced I'd been suffering from RA for years: she was right!
I had a similar Robles to you. All of a sudden all my toenails turned brown. I got weird blisters underneath the nails, and then they all just fell off! At the same time I was experiencing weird rashes on body. Scalp was so itchy I almost ripped it off scratching. My Achilles (bilateral) were so swollen I couldn't walk, and I was so stiff I was walking like a 98 year old.
I asked GP to refer me to rheumatology. Her response? 'We are not at that point yet!' There was no treatment, or diagnosis given for toenails dropping off, or other issues. I was in agony and taking orpmorph! Seriously!!
In the end I wrote a letter of complaint. I saw rheumatology nearly two years after initially complaints. I have psoriatic arthritis!
Hello I'm having same problem . I have a high RA result, pain in neck and elbows mostly but now spreading to feet wrists fingers. I have no swelling as yet . I'm self medicating at mo as the drugs Doctors want to give me are horrible side affects and cause other problems in the long run . My condition has not been explained and I'm still waiting to be seen by the RA clinic . when I was referred to the physio the doctor over ruled the hospital and wouldn't let me go ... x
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