Raised immunoglobulins anyone?

[Wooziesoozie]

Hello!

I have APS (diagnosed as primary obstetric), hashimotos & coeliac disease, also fibromyalgia. I'm not currently under the care of a consultant for my APS. My gastroenterologist, for my yearly coeliac check up, orders loads of bloods. Some of them are not specifically coeliac related but autoimmune generally eg thyroid tests. He also orders immunoglobulins.

On the past couple of occasions, my immunoglobulins igG and igM have been raised. Not vastly, but high nevertheless. I'm getting no joy out of the gastro as to why this is (my appointment is with the dietician and she has emailed & phoned him, but no answer is forthcoming). In coeliac disease, it is common to have igA deficiency apparently, not raised immunoglobulins.

My private doctor who I see about the fibro & thyroid is concerned I should have further tests. Myeloma (blood cancer) can cause raised immunoglobulins (eek!) as can autoimmune connective tissue disorders. At the moment,mint looks like I'm going to have to have the testing done privately, as I'm not getting anywhere with the NHS, but I will continue to fight!

My question here is, does anyone have raised immunoglobulins 'just' with APS ie those who don't have lupus/sjogrens/RA etc? Or do you think this is suggestive that I might have a further AI condition?

I've had weak positive tests for ANA and RF in the past, as well as anti-dsDNA, which was put down to the APS (also the specific abs for APS & miscarriages).

My ongoing symptoms, despite optimal management of my thyroid & coeliac disease and treatment of adrenals, gut issues etc are ever worsening joint & muscle pain, disabling fatigue & low grade depression.

Wondering if these bloods and symptoms are down to APS or another AI? Prof K didn't think I had lupus etc when he saw me when I was originally tested a few years back.

Thanks!

[MaryF Administrator]

Are you still under Professor K's clinic? If not you need a referral to one the recommended specialists:

hughes-syndrome.org/self-he...

ard.bmj.com/content/48/5/36...

MaryF

[Wooziesoozie in reply to MaryF]

No I'm not Mary. They discharged me when they were having a drive to reduce their patient numbers. They did say I could be referred back there if there were any issues. What do I need to say to my GP though? He said he would leave the interpretation of my results to the gastro and the gastro doesn't seem interested.....

Do you think I should be retested for the whole range of connective tissue disorders?

Thanks for your help!

[MaryF Administrator in reply to Wooziesoozie]

You could ask to have a full panel done, plus thyroid, D, B12 and iron, and asked to be referred to your nearest local rheumatologist off our list. At least if the bloods are done, (the usual three tests for Hughes Syndrome), and any other the GP would find useful, and then that coupled with symptoms should get you a referral back, you were told you could be referred again if a problem arose! So that would give you some bargaining power. MaryF

[Wooziesoozie in reply to MaryF]

Thanks v much Mary. My thyroid, D, B12 and iron are all really good for the first time ever (thanks to my private doctor, lots of diligent supplementing and erfa dosed to levels where my TSH is suppressed) so I know it's none of those things. My private GP is happy to order a full connective tissue panel, but obviously that will cost a lot of pennies lol, so I need to try persuading the NHS first thanks again Mary.

[MaryF Administrator in reply to Wooziesoozie]

Your own GP should do it, no reason not to. MaryF

[Wooziesoozie]

Another question if I may ☺️

does the type of blood thinner affect the general autoimmune symptoms associated with APS eg joint pain and fatigue? because I haven't clotted other than having miscarriages, I've assumed that being on clopidogrel is sufficient. But could it possibly make any difference to my symptoms of joint pain and fatigue to try for example heparin? (Just thinking of things I need to discuss with my GP in the context of asking for a re-referral).

Many thanks

[Wooziesoozie]

Thank you! Yes I do have high thyroid antibodies.

That's interesting about sjogrens. Some of the symptoms do fit, but when they did that horrid dry eye test, my eyes were very moist, so they didn't think I had it. I think that's why they ended up giving me the fibro diagnosis instead. Problem is now that when I go to the GP to complain about my pain, it's always put down to the fibro. I'll definitely push for a re-referral.

I was taking plaquenil, but started having every virus under the sun, so we stopped it to see if it was the plaquenil that was suppressing my immune system. Seeing as I'm still getting every virus under the sun (I think I've had about 30 since last summer), I guess I might as well go back on it! I'll be asking my GP to do that too.

[Wooziesoozie in reply to Wooziesoozie]

I should add that the immunoglobulins in the test that I'm referring to aren't specific ones, they're just listed as igA, igM and igG.

[Debbweb01]

I'm so sorry u have to fight also! I just wrote a post saying I fight every morning on the hone for 3 hrs every morning! I was put on Cymbalta for depression for depression after my 24 yr old son passed! Now they say it helps for pain! I've been told I can NEVER go off Cymbalta!!! I tried once and was in Nashville with Nanny 23 when she told me, also on Cymbalta and ALSO APS mild, that I must get bak on Cymbalta because I'm having Panic attacks! I fought it for a while but after our Honkey Tonking in Nashville, I went bak on and some days I don't take it and then I cry!!! So I keep it up as best my goofy brain can remember!!! Lol... Keep up the good fight my dear! As you will c all of us APS SUFFERERS HAVE HAD TO UNFORTUNATELY FIGHT FUGHT FIGHT AND WEN U GET INTO THAT FUGHTING MODE YOU TEND TO FIGHT WITH EVERYONE! I stopped fighting with my family and read Kay Thackray 's book called "Sticky Blood," it reall helped me to understand the trials and tribulations of our disease! Unfortunately I had to loose a leg b4 I was DX'd, which all cud have been prevented! Just get to a RHEUMOTOLOGIST who knows about APS! Mary on her will give you a list of docs in Uk that are affiliated with AOS!!! Good luck and keep fighting gently!!! Lol... Godspeed