Weird results from a diabetes monitor machine.

[Newcastlelad]

Hi a friend of my has diabetes and I was just wondering what kind of reading I would get so I had a quick test. The result kept coming back lo meaning so low it couldn't give a reading in numbers so I tested my blood a few times and it kept coming back lo but suddenly on the final test my 3rd I had a very high reading. We ran the test on a few family members to see if the machine was ok and they all came back normal but back on me....back to the weird results. I'm fairly new to having APS so have been reading lots of information and I read somewhere INR home test machines can't be trusted with APS as they give wrong readings. I was wondering if this could be the same with diabetes monitors? Has anyone had any experience with this. Thanks for any help anybody can give.

[Lure2]

Are you talking about a Diabetes-machine or a machine to test your INR? Are you on Warfarin?

[Newcastlelad]

Sorry its a blood glucose machine and no I'm not on any blood thinner just waiting for my first rheumatologist appointment they said its a 6 month wait.

[Lure2 in reply to Newcastlelad]

The Doctor who tested you positive for Antiphospholipidsyndrom could perhaps explain and you can get Glycose-tested. When we are not on bloodthinner we usually have an INR of 1.1 or something like that, taken in the vein at a lab.

Do you have bad symptoms from your APS and not only positive antibodies? Do you know if that Doctor who diagnosed you did send you to a Specialist of autoimmun illnesses as not all Rheumatologists are up to date with our illness. A 6 months wait is too much if you have symptoms.

If you are testing positive to one of the antibodies they test to give you a diagnose, Lupus Anticoagulant, then it can be difficult to selftest. I am LA positive but I have learnt with the help of my Specialist and this site as well. I live in Sweden.

[Newcastlelad in reply to Lure2]

Hi thanks for the reply I have lots of symptoms like lots of what I'm guessing are superficial vein clots and I'm pretty sure I have avascular necrosis of the knees and hips. I actually discovered I had APS by myself with the use of the internet and had to persuade the GP to run the tests. She has referred me to a specialist in APS in my are which someone on this site told me about but like I say its 6-9 months to tell you the truth I'm really scared something will happen while I wait. I'm not sure where I would go to try and get an earlier appointment as my GP took major persuading to get me this far.

[Lure2 in reply to Newcastlelad]

Have you run the tests? Was the blood-tests taken twice with 12 weeks between the two tests and did it come back positive or negative?

If positive you should not wait 6-9 months for a Specialist as you then have a diagnose of APS with two positive bloodtests and also eventually typical APS-symtoms and you should have something to protect you from a clot or PE or DVT etc.

Please talk to the Doctor who took the tests and see to it that you find a Specialist of autoimmun illnesses who is knowledable of this illness. If someone on this site gave you the name of the Doctor I hope it is a knowledable Specialist. it is very few Specialists who really are up to date with this rare disease. Try talk to your GP about your symptoms if you have two positive antibodies twice.

[Newcastlelad in reply to Lure2]

Yes I have had the blood tests like you said and both were positive. The specialist someone told me about is also on the official APS charity site list so I'm pretty sure she will be very good. My GP actually phoned the specialist about a referral and I'm very sure she told her I had no APS symptoms to go with the positive blood tests as this is what she has told me even though I have pointed out about the amount of clots I think I have but she has never even examined me. I will go to see her again but I'm dreading it and she will probably tell me to keep waiting.

[Lure2 in reply to Newcastlelad]

It is difficult to examine a blotclot. They have never found any clots on me although I have had a lot of microclots and neurological symptoms you can read about on this site (not mine but in general). I am triple positive with high titres and I have been on Warfarin for 7 years now and so much better when my INR reaches the 4.0-level.

It is really very difficult to diagnose APS and SLE also have positive antibodies and other autoimmun illnesses often go together with APS and therefor it is so important to get a Specialist of autoimmun illnesses who knows how to diganose and treat these illnesses like SLE (Lupus), Sjögrens syndrom, Thyroidea-issues and also RA and others sometimes. Even MS and Fibromyalgia can be misdiagnosed.

I thought you had neurological symptoms like vertigo, doublevison, dizziness, headache, bad memory, difficult to find words etc. In that case Baby-Aspirin could be some help before the Specialist will do a trial of LMW Heparin to see how you react as to your symptoms.

[Newcastlelad in reply to Lure2]

Thanks for your input again I really appreciate it. The lumps I describe happen to me after sitting for a long period of time they feel like knots which hurt for a week or so and the initial pain seems to go away but a lump is left behind. I also have neurological symptoms too I get really bad headaches and have spells where its difficult to find words.

I have also just had and ultrasound down on my salivary glands because of dryness and he said its the look of the glands where indicative of sjogrens and were going to keep monitoring with further scans. I have had blood tests for sjogrens antibodies

but they were negative but I hear you can be seronegative. My mum has just been diagnosed with hashimotos and I have just found out my grand mother was treat with warfarin but I couldn't find the reason why so maybe she had APS as well. Thanks again for the information.

[Lure2 in reply to Newcastlelad]

In Sweden we can get a diagnose if we have very dry eyes and mouth (Schirmer´s test). Sometimes the positive antibodies for Sjögrens will come later on.

[ndstephens49]

Hi.

I have APS and several other clotting issues. I take coumadin with target INR of 3-4. I also take aspirin.

I have also been on a good deal of prednisone for last 10 months due to flare of vasculitis (Giant Cell Arteritis and Polymyalgia Rheumatica). Since I’m on so much prednisone, my blood sugars have skyrocketed. I have never been in insulin before. Now, I am on short acting insulin 3 times a day. I also do a finger stick blood sugar 3 times a day.

At this point, blood sugar meters are very accurate. They’ve been on the market nearly 40 years now. I am not aware of any inaccurate readings with a glucometer as those that can occur with INR meter.

I was a registered dietitian for 20 years at local hospital and glucometers are routinely used rather than a lab draw UNLESS you are having a lab draw anyway for other blood tests.

You should probably contact your MD and let them know what your readings were.

They may want to do a lab draw.

Good luck

Nancy in West Virginia

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[Juejue11 in reply to ndstephens49]

Not wanting to hijack someone's thread. I too was diagnosed with Polymyalgia and thought my dr was just pulling words out if the air insteas if using my fibro which was diagnosed years before by my rhuemy. I have vascular issues and vein pain to the point I can't walk without experiencing massive pain. I have read about the arteitis and the giant cell. I haven't been tested, I jind of don't want to be tested for something else for the fear of it being positive, or even negative and making me feel like my body is making this stuff up and I am a complete fruitcake. If positive I don't want more meds and something else to add to my list.

I am rambling, sorry. My question is how did you get the diagnosis and do the steroids help? I have found when I am on a course of steroids I feel better all over, head to toe if its a course of more than 5 days, if its one of those short tapers I really don't feel any different. Who did you see and what did you mention in order to get your diagnosis. My headaches and vision problems along with me sweating suddenly are getting to me an issue. I am also dealing with anxiety for the first time in my life which i thought I understood what people were going through, how wrong was I!

[ndstephens49 in reply to Juejue11]

I was first diagnosed with vasculitis in 2000 when I was getting strange ‘bruises’ and spots on skin. My dermatologist biopsied the spots and determined it was vasculitis. For years I made the mistake of thinking the vasculitis was confined to my skin. Now I know it affects everything, like autoimmune issue, and is probably responsible for as many of my symptoms as the clotting problem.

I have been treated with Rituxamab, dapsone, prednisone, immuran without as much success as I would wish. Although, since GCA can cause blindness, and I’m not blind, it must have helped more than I am admitting.

The Vasculitis Foundation has a great website out of Kansas City. Vasculitisfoundation.org.

Lots useful information.

Good luck!

Nancy in West Virginia

[Newcastlelad in reply to ndstephens49]

Thanks for the information about your machine being very accurate. So I think will follow your advice as ask to get it checked out.