Never-ending confusion! Positive and negative IGg blood results

Hi there, I've used the site before but as my rheum told me he was pretty sure I didn't have Hughes I disappeared for a while...

3 years ago I was tested for Hughes as part of a work up done by my migraine specialist. My IGg levels came back at 300+ (normal 1-10) but were followed by a normal result 6 weeks later. Nothing more was thought of it until this blood test was repeated less than a year ago while being tested for Behcets, and came back once again very high, this time 200+. I was referred to a rheumatologist who was very concerned by the high level and ran a repeat blood test which once again came back normal. He was very confused by this and said it shouldn't happen. He repeated once again, and once again it came back within normal range. At the end of June it was repeated again as standard by my neurologist migraine specialist, and it came back in the 200-range again.

I have to wait 3 weeks to see my GP as he's on holiday, and then I imagine he will ask the rheumy to see me again (he's one that HSF have on their database).

The thing is, every single high blood test result has been processed by a lab in Liverpool, and every time they repeat it elsewhere it comes back within normal range. It makes no sense and is very confusing.

I match the Hughes symptoms well, Rheum thought I did too and was talking Warfarin until we had a normal result again and then lost interest and said he thought it was unlikely that I had Hughes.

I'm sick of them messing with me to be honest, I just want a straight answer, or at least a heparin trial to see if it makes a difference!

Basically I'm just looking for some advice, what do you do when they can't make their minds up?! My neuro has referred to it as antiphospholipid syndrome in his letter to my GP, so it seems as far as he's concerned that's what I have? But whether rheumy will agree is another matter. It's just so your life in their hands and it's frustrating!

9 Replies

  • I can understand your frustration! Unfortunately what you describe is quite common and some Doctors dont like sticking their necks out or taking the big step of putting somebody on warfarin for life which is quite understandably a huge step if they are not sure.

    The facts are these, you dont say what symptoms you have but you say you have APS symptoms so that is one thing. You dont say if you have had a clotting incident and to meet the diagnostic criteria there should be one. You also dont say if you have had any miscarriages and that too is another in the criteria. You have had two positive tests twelve weeks apart which is part of the criteria, was that a aCL blood test? As you say the choice now would be to do a Heparin trial to see if symptoms improve.

    Antibodies come and go so constantly repeating blood tests serves no one TBH. I would recommend you listen to Prof Rahman's lecture at this years HSF Patients Day. The audio can be found here on this link and its the third lecture in at about 34mins into the tape and he talks about this subject. If you find this helpful the full transcript can be bought from the HSF website shop and you could copy the lecture or take it along to show your Rheumy. please keep us informed as to progress. Good Luck!!/#hughe...

  • Hi there, and yes to all the information already supplied by APsnotFab, It is annoying that the tests are the only thing seen as some clinicians as being the bench mark of you have it or don't have it, As it is clear with a lot of people that results come and go. Also of course there is a paper written on Seronegative Hughes Syndrome, which points out very clearly regarding diagnosis and clear clinical symptoms. Mary F x

  • I've had no clotting episodes, or miscarriages, however I'm only 21. I've had chronic migraine for nearly 7 years- headpain every second of every day, my balance is terrible (I use crutches to get around and I used to use a wheelchair because of that, and because of horrendous leg pain) I have brainfog, fatigue, chronic pain, fibromyalgia.

    I don't necessarily want a diagnosis, especially if it's not the right one (been there done that, too many times!!) and the idea of blood thinners is very daunting. However if it helped with the pain and feeling better then that would be amazing.

  • I dont know where you are situated but you are one of those people who I would recommend to Prof Hughes for the final say so to speak. The difference between him and many other specialists is that he has years and years of seeing thousands of APS patients experience under his belt and if he has not seen it then basically no one has. He can tell (and is willing to make the judgement) on symptoms as well as the blood tests that you have had. So his opinion may well be a very important one for you.

    You may also like to know that I suffered from a condition called Hemicrania Continuia which is a type of trigeminal autonomic cephalagia (TAC). This causes a daily, one sided chronic headache plus I also had idiopathic stabbing through the eye. The diagnosis for this is via a indomethacin trial and as my pain became intractable I was part of a trial to have a occipital nerve stimulator Bion implant which I had for six years until it died and had to be explanted. By this time I had been diagnosed with Hughes and put on Heparin so the surprising thing has been that when the Bion was removed the Heparin has controlled this condition.

    Im not suggesting that it is a reason to take Heparin BUT, if it is concluded that you do have APS and there is perceived to be a sufficient risk then it may well help your daily headaches.

    Has it even been suggested that you try aspirin or Clopidogrel? That also may be a place to start and then be refereed to a specialist headache clinic where they deal with different types of Migraine.

  • Thanks for that APSnotfab :) I've been diagnosed with chronic migraine and have 24/7 pain, I've been on at least 9 different daily preventative medications, none of which have made the slightest bit of difference sadly! I've just had approval through for botox however I have yet to decide if that's a route I want to try just now.

    I cannot imagine my life with less/no headpain, it's been nearly 7 years since I've had a pain free second, it seems too much to hope for.

    I tried baby aspirin for a few weeks however there was concern over my history of stomach pain and irritability so I was advised to stop.

    My neurologist is one of the top in the country for complex migraine and severe headache disorders, he works privately mostly but does a little work at The Walton Centre neurological hospital in Liverpool, I'm happy that he's giving me the best care possible (and actually has something resembling a bedside manner, novel for a neuro!!)

    I have already decided that I would really like to try heparin over warfarin, however rheumy was not keen, although couldn't tell me why... (I'm assuming it's all down to price) even though I pointed out to him (politely, ofc) that my research had shown that heparin was the drug of choice for neuro symptoms.

  • Look Up Prof Peter Goadsby, thats who Im under, he was at the National but now at The Royal Free. He spends most of his time at San Francisco but one week of the month here. Ask your guy about a Gamma Core Stimulator. That is the trial that is being worked on with good success in both centres. Its an external stimulator and very easy to use. It will not compromise your APS either.

    Let me know if you do start on Fragmin and what the outcome is because if it is positive then it would be two of us treated with it for chronic daily headache! x

  • Im really sorry these posts are coming out in all the wrong order. Hopefully this will improve soon. In the meantime you will have to work out the sequence of reply's by the times on the left of the post! :-(

  • Hello Fairypies

    Sorry but I am just not getting any of the email updates through any more for some reason so have missed this post.

    I am similar to you in that I have had both positive and negative blood test results over a given number of weeks. I was placed on beta blockers back in my early 20s as I suffered with headaches even then. More recently I am testing negative for APS despite clinical history, previous positive tests and associated symptoms. In the end, fed up with the run around myself (being suggested that my symptoms were stress releated), I went to see Professor Hughes and he has been both brilliant (as expected!) and hugely supportive. Without his dx I would not have received the support at local level both with my local hospital and GP surgery. If you can get to see the Professor it would be good.

    I've also had a successful trial of Heparin but local Rheumy wanted to transfer me to Warfarin which the Professor suspected might happen (agree that this is probably down to cost). Since that time, I've not yet had a stable INR so remain on weekly blood tests which is frustrating and time consuming BUT the headaches have virtually disappeared getting one every three-four weeks rather than 3 times a week. I remain physically tired but this week have moved office across town so probably not unexpected!

    Thinking of you, stay strong and good luck with the advice that APSnotFab has suggested - sound advice indeed!

  • The best way to help you is to tell you my story. I also have neurological problems and went from a cane to wheelchair with min. Walking with a walker. 19 years ago I tested positive for APS/Hughes after several miscarriages. I was given heparin when I was pregnant & Had a baby girl. I stopped the heparin because at that time they associated with pregnancy. All I was told was later in life I was a high risk for moved & told my new dr. This. My blood was tested & the test was negative.bhe told me that it was a false positive or it went away. I took Advil or aspirin all my life because of headaches. About 8 years ago I started to have right leg weakness. First they thought it was a disc but the MRI showed only showed a small budge. Then they jumped to MS. I had no lesions in the head & no other symptoms. This went on for 3 years. They gave MS nerve meds which I reacted to one after another. Then symptoms became much worse. They found I had spondylethesis. They did a fusion which failed 3 of the 4 screws pulled out. Another extensive surg. was done. Following surg. They gave me a blood transfusion which caused my body to go crazy. I spent 2 years trying to get answers. I saw a neuro surgeon who said I think you have a autoimmune disease not necessarily MS. He referred me to a neurologist who made me worse & that was the last straw. My husband found this website and I owe these people my life. The people on health unlock are so very helpful & they changed my life. 1 year ago I saw prof Khasmashta at the lupus center. He was wonderful. He told me you know you have APS/Hughes. I told him the drs. In the US said it went away. He explained it never goes away. The reason the test is negative is because they only test for 2 proteins & there are more than that involved.

    He gave me Clexane as a trial. My headaches went away & my neurological symptoms improved. I started exercising again & walking with walker got easier. Then the Clexane ran out & problems began returning. I seem to react to all the other blood thinning medications. I was so confused. So I called the Food Drug Administration in the US. He explained to me that these drugs are biological & are made from pigs gut. Each drug company has a different process and different fillers. Here is an example Clexane & Lovenox are made by the same company. Lovenox is approved by the US clexane is not. Clexane uses different fillers & pigs from France, whereas the Lovenox uses pigs from China. I can use Clexane & works great, lovenox makes my throat swell. So don't be afraid to try different meds. The clexane was not working that great after a few months. I just saw Prof. Hughes. He was wonderful. He told me it was a matter of getting my dosage correct. He also told me to learn my body & trust myself. It has been a couple of months & I am now in therapy. I am determined to get out of this chair. So please get help & learn about this disease because it is really hard work to get my body working right so I can walk like everyone else. Hughes syndrome effects people in different ways because it has to do with the blood. I am so sorry that this has affected you so young-21. Please try to get to prof. Hughes or one of his associates. ASAP. Designer16

You may also like...