Have I, haven't 1?????

[Moggie]

Hi all,

I already have one autoimmune illness and my immune system has been very busy destroying my thyroid but over the last 12 to 18 months I now have a lot of pain in my left knee, left hip and every so often I wake up with mind blowing pain in both elbows. The last time the elbows flared up it took me 3 days to straighten my left arm. Had RA blood test done at the GP's, due to a few nasty falls and the pain in my knee, and when they came back negative my GP tried, and failed, to dismiss me with no further testing. To say I am a very strong character is an understatement and I was having none of it so she referred me to a falls clinic. There they found that I have severe balance issues which were being helped along by the weakness down my left hand side, They suggested an x ray on my left knee but that shown nothing, even though my GP had murmured something about osteoporosis, so know I am a loss as to what to do. My pain comes and goes, my knee pain is the worst and can leave me crawling on all fours up the stairs one day and then the next morning it is gone. After a heavy Christmas shopping trip I ended up in agony with my knee and my hip and ended up having another fall. I am already on a very restricted diet, to try and control my thyroid issues, and am gluten, dairy, legume, sugar and all processes food free. I am also a vegetarian and have been for the last 30+ years. I have mentioned RA to my GP but she has dismissed this due to blood tests, even though it has printed under every result that it does not rule out RA. I am thinking of going back to her and asking for a referral to a haematologist but really need help from you guys for some ammunition that she cannot argue with - unless the above is not ringing any bells with any of you and it seems unlikely it is RA.

Any suggestion would be helpful and appreciated.

Thanks for reading.

Moggie x

[cris1728]

I would ask to be referred to a rheumatologist as there are many different types of arthritis. You do not say what blood test she did, many with RA have negative rheumatoid factor. GPS don't usually test for anti cup which is a more specific test for RA. Even if she has tested for that there are many more kinds of inflammatory arthritis. Has she checked your inflammatory markers? Rheumatologists have a much broader knowledge of autoimmune diseases and thyroid problems come into this group. Don't be fobbed off and good luck in getting some answers xx

[Moggie in reply to cris1728]

Thank you so much for your reply and apologies for the late acknowledgement but I have been trying to find the correct blood test results to post, which may help you in offering further assistance as unlike thyroid results, which I am very familiar with, the bloods done for RA mean nothing to me. Please find below what tests my GP did and the results.

Intrinsic factor antibody level 2 (Range 0.0 - 24.0)

Gastric parietal cell antibody Negative

Anti-cyclic citrullinated peptide antibody level 1 (Range 0.0 - 7.00)

Ana Elisa 0.3 (Range 0.0 - 1.0)

Rheumatoid factor level 10 (Range 0.0 - 14.0)

Any help on the above bloods would be helpful.

Thanks for you original reply and suggestions.

Moggie x

[Zip1]

I agree with cris1728, push for a rheumatoly referal! I have had to have my thyriod removed and I then was diagnosed with Ra. Hopefully you can find some answers. Xx

[Moggie in reply to Zip1]

Poor you as I think I would prefer a de funked thyroid than no thyroid at all. Was your thyroid over active or was there something else wrong?? I have answered Cris 1728 and added blood results as it may be easier for people to help, and give me more ammunition to use against my GP.

Thank you for your reply and apologies for the late acknowledgement.

Moggie x

[Zip1 in reply to Moggie]

Hi, yes my thyroid was overactive and ended up with me having a thyroid storm so something had to be done. I am now fairly well controlled with medication! I hope you get sorted soon x

[Moggie in reply to Zip1]

Glad you are now stable on thyroid meds and thank you for your input.

Moggie x

[Biofreak]

I agree with both previous replies. Ask your gp to refer you to rheumatology for more tests as they don't just look at blood results but the whole picture. Tell your gp you can't carry on like this as you are seriously debilitated and in so much pain. Best wishes.

[Moggie in reply to Biofreak]

I will take your advice and book another appt with my GP due to the pain I am now in and the adverse affect it is having on my ability to do a lot of things, driving is now becoming very painful amongst other things.

Have posted blood test result on Cris1728 reply.

Thank you for taking the time to reply and apologies for late acknowledgement.

Moggie

[Biofreak]

No problem. The main thing is you get the considerartion and treatment you need. I hope all goes well for you.

[Moggie in reply to Biofreak]

Thank you.

Moggie x

[Biofreak]

One thing Moggie you mentioned yout elbows. My elbows were the very first thing to be affected by ra, then my wrists and hands. I also have osteoperosis which was diagnosed before the ra. They quite often go hand in hand. Pardon the pun. I am having a flare at the moment. Woke up this morning and couldnt move my arms and elbows really painful. Im due at rheumatology at end of the month. Think im ready for a change of meds.

[Moggie in reply to Biofreak]

Poor you, does the pain get worse as the disease takes hold, if so then I feel for you as the little bit of pain I have experienced is bad enough. I hope a change of meds will work for you and thank you for your input.

Moggie x

[Biofreak in reply to Moggie]

Yes flare ups are common with ra. You can be ok one day and wake up the next in a painful mess. Ra is a degenerative condition which is mostly controlled by effective medication which can slow it down and at its best put the condition in remission. This is why its most important for you to get a proper diagnosis so that the process of finding the right meds for you can start. Good luck xx

[Moggie in reply to Biofreak]

Thank you so much for that informative answer and I now realise that the sooner this is sorted the better the long term prognosis will be. Will now book an appt with my GP and demand a referral.

Thanks again

Moggie x

[cris1728]

Hi Moggie. Those bloods look normal but normal bloods do not mean you don't have a problem. It may be worth asking the GP to do inflammatory markers FBC,ESR and CRP. Also Irate level which can cause Gouty Arthritis, this level is not always raised during an acute attack though. I would push for a referral to Rheumy though. Stand firm and good luck in getting some answers xxx

[Moggie in reply to cris1728]

Never heard of gouty arthritis, will have to goggle that one. It does say on some of my blood results that it does not rule out RA and, instead of asking my reluctant GP for more testing, I think I am going to go straight for a referral because if it isn't RA then there is definitely something else going on. I am being a bit unfair on my GP as, after an initial battle on thyroid test, and in particular the vitamin problems that thyroid illness can come with, she will now give me most of what I want seeing as every test I have asked for has come back with problems attached.

Thank you for all your help and advise and, no doubt, I will be back on here asking for more of the same as there is nothing like advice from a person that has been there, done that and is wearing the T shirt.

Moggie x

[cris1728]

Good luck with getting the referral and hope you get some answers xxx

[Moggie in reply to cris1728]

Thank you, know doubt I will be back on here to ask all the lovely members for further advise.

Thanks for all you help.

Moggie x