Indeterminate

[Phoenix-Fire]

I have been tested for aps 4 times throughout the past 6 years , everything is negative besides the igm which always comes back as indeterminate ranging from 13-17. My Endo says they are not concerned and there is no risk , I was wondering if anyone had any insight on repeated indeterminate igm results . As my concern at this time is that I am having a thyroidectomy in a weeks time , due to a rapid increase and number in nodules that are causing pain . Unknown if there is a malignancy .

[MaryF Administrator]

HI, a lot of us started off 'seronegative' for Hughes Syndrome/APS only to test positive to the tests later on. I suggest you do all three tests not just the one, if only one was done. I enclose our charity website underneath, and under Hughes Syndrome, are 'main tests'. That is a good starting point, for now concentrate also on your up and coming procedure, and also join Thyroid UK on this platform, an excellent forum and charity for support.

Most of us are also careful to test our Folate, Ferritin, B12, D alongside Hughes Syndrome/APS and also Thyroid testing.

ghic.world/

For myself now, for years I have gone in and out of negative positive testing but nevertheless as predicted by the very best doctor, it would show up eventually, which it did.

[Phoenix-Fire in reply to MaryF]

Thank you very much for your response , I have taken the three tests 3 times within the past 6 years ,but everything is negative besides igm showing as indeterminate . I was told that it could be in relation to my thyroid , which I will definitely take your advise and focus on that for the time being as well as join the thyroid group . Thanks again.

[MaryF Administrator in reply to Phoenix-Fire]

Do keep this condition in mind though, read through the charity website and familiarise yourself with the information, and learn from the questions and responses on here. MaryF

[Phoenix-Fire in reply to MaryF]

I will definitely continue to work with my endocrinologist and request follow up . I was advised to let make my thyroid surgeon aware of my results as well.

[MaryF Administrator in reply to Phoenix-Fire]

Our list of specialists, beyond those on the charity website, are over on the right hand side of the forum under 'pinned' posts. MaryF

[Phoenix-Fire in reply to MaryF]

Thank you .

[KayHimm in reply to MaryF]

It is interesting, Mary, that we are hearing from more people who, as Professor Hughes noted, have anti-phospholipid antibodies and POTS or orthostatic hypotension. My neurologist said IVIG (likely in combination with Warfarin) is very effective. So there is hope. They like to use supportive treatment as long as that is effective. K

[KayHimm]

Why did they do the tests?

[Phoenix-Fire in reply to KayHimm]

Numbness .... tingling .... burning in extremities, fatique . Later diagnosed as severe small fiber neuropathy , by biopsy, chronic fatique and fibromyalgia. Slightly positive rheumatoid factor all other autoimmune testing negative .

[KayHimm in reply to Phoenix-Fire]

It sounds like the endocrinologist is saying she is not concerned about the procedure. I am told the same thing about low level titres. But you have quite a few other symptoms. How are they treating those? I agree with the others that you should see an APS specialist. Do you see a neurologist for your small fibre neuropathy?

[Phoenix-Fire in reply to KayHimm]

My neurologist follows the neuropathy , when it comes to my other symptoms I’ve been told that there’s nothing to treat the chronic fatique and the pain can be treated with pain relievers but there is no medication that treats the illness just the symptoms . And I am very apprehensive when it comes to medications unless absolutely necessary , my rheumatologist recommended methotrexate , but I didn’t want to start it if I wasn’t officially diagnosed with rf which is what she suspected initially. So I am just taking folbic tablets for that , she is following it and says that if there’s something going on it will present itself .

[KayHimm in reply to Phoenix-Fire]

I know it is complicated. You might want to ask what the methotrexate could help with. Could the fatigue decrease when inflammation is decreased by the methotrexate? Sounds like your illness has not presented itself clearly. You might want to ask others here about their response to methotrexate. You have a lot going on with the neuropathy and all. Hoping all good things for you.

[Phoenix-Fire in reply to KayHimm]

I also feel that whatever is going on hasn’t completely presented itself as of yet . I thank you for your well wishes and send you my own , thanks again.

[KayHimm]

And Phoenix-Fire has small fiber neuropathy — another peripheral nerve disease.