Got some tests results back...

[annabettina]

Looks like I don't have APS based on these test results. Also dr said they were normal, but still wanted to run them. Here goes, may have missed one...nurse copied results more than once and interpretative information from the lab all ran together...

Anti Phospholipid panel:

Phosphatidyl serine Antibody IgA 2 U/mL 0-19

Phosphatidyl serine Antibody IgG 5 U/mL 0-10

Phosphatidyl serine Antibody IgM 16 U/mL 0-24

Phosphatidylglycerol Antibody IgA 0 U/mL 0-18

" " IgG 1 U/mL 0-18

" " IgM 2 U/mL 0-18

Phosphatidylinositol IgG 0 U/mL 0-18

" IgM 2 U/mL 0-18

" IgA 0 U/mL 0-18

Thanks for your review.

[Lure2]

Hi Annabettina,

One month ago you put a question about your neurological symptoms to Dave.

Both Dave and APsnotFab, Mary and also I (who has the same symptoms) suggested that you should do an investigation with an APS-Specialist. Many members here have negative antibodies from time to time but that does not mean that that they do not have APS.

Also I doubt you have tested for all the three antibodies. We test for three but you can have APS on just one positive antibody. I have all three positive and have always had since 2002.

So try to get a professional Doctor who really knows what APS is and perhaps you could also try baby-Aspirin and see if you feel better on it. I do not know if you already have done that.

I was put on Aspirin to begin with but when my symptoms got worse i finally understood that I just had to start Warfarin. I did not want to do what the Doctors suggested but finally I did and Warfarin has been my "lifesaver". Aspirin is not an anticoagulation drug only an antiplatelet-drug.

If you have not read "Sticky Blood Explained" by Kay Thackray I think you shall do that.

Best wishes from Kerstin in Stockholm

[GinaD]

Numbers jump around depending on how active your immune system is on that day. Which can be the result of some bloke with a nasty bug sneezing across from you on the train. But experienced doctors can note patterns and are more likely to listen to the patient. As many of us on this site have found independently on our own roads to diagnosis and effective treatment, consulting with a doctor well versed in Hughes is paramount. Paramount!

[annabettina in reply to GinaD]

TY to you both.

I've downloaded the book but right now have to take the sib I care for to the lab.

For now, please tell me how to find APS specialist in my area?

Ty again.

[MaryF Administrator in reply to annabettina]

You have had some good clear answers above. MaryF

[annabettina in reply to MaryF]

Hi Mary,

You are referring to these members' responses and not the results of the tests my endo had run?

Thank you.

Annie

[MaryF Administrator in reply to annabettina]

Yes, and regarding endo tests, I do mine privately: thyroiduk.org.uk/tuk/testin... MaryF

[annabettina in reply to MaryF]

Mary, I'll ask Debb but will also ask you...

Can the necessary tests be done privately in the US? Have done thyroid and cortisol privately.

Until a definitive diagnosis, I'm taking nattokinase (with a little serrapeptase in the capsule). Probably not enough to help protect a person with possible APS but hopefully better than nothing.

Question: What are the chances of stroke when APS is treated with the conventional meds such as Warfarin?

My balance is improved, but also, at my request, endo put me on some Cytomel (levo--T4--reduced and T3 added; as mentioned before I think, I have no gland as result of I131 for Graves' when I was twenty...been on levothyroxine ever since and have stayed slimmish...amazingly).

I saw that TSH was normal. Free T4 normal, Reverse T3 normal, but Free T3 was a tad below normal and ratio between FT3 and RT3 not good (have lived, eaten, and breathed thyroid my entire life--former facilitator with national thyroid foundation and then became listowner of an animal thyroid group after vet researchers started reading my posts in another group and contacted me...I've been taken down some unusual paths in my life :). Endo thought everything looked ok, but I know better.

So balance may be better from the synthetic T3 (thyroid can affect the vestibular system...and circulation) and/or the nattokinase perhaps...perhaps...improving circulation to the ear from APS effects...who knows at this point.

Thank you and will keep all of you posted--and ty again, Kerstin et al. for your help.

[MaryF Administrator in reply to annabettina]

Yes you can do tests privately but you need to find the right doctors, one for your Hughes Syndrome/APS (asking members on here for your nearest one in USA), and Thyroid Change, Hypothyroid Mom and Mary Shomon are the places to gather information regarding your thyroid care, do check your iron, B12 and D are up to scratch also.. and if on any iron, a four hour window is left either side of taking it before taking thyroid meds... MaryF

[Debbweb01 in reply to annabettina]

Yes u can be treated privately in USA, but may be expensive depending where and who u go to! We will talk real soon sorry so late!

[Lure2]

I will try; to the right of your question there are (I think it is called "scroll up") "Pinned Posts" and No 3 is "Specialist of APS in UK". If you do not understand my Swedish/English tell us and someone else will explain I am sure.

Kerstin

[annabettina]

Lure, got to leave for the pharmacy now but did a quick check (checking because I've joined all these Internet forums in a desperate attempt to find out what's wrong....the drs here in the good ole USA are clueless...I know APS is not well-known to a lot of physicians, but generally speaking our health care is in the toilet, as are other things).

Yes, I see what you're talking about--your English is beautiful, btw--but I'm only seeing UK specialists....In my desperation, did I up and join a UK only group? I thought this healthunlocked group was open to people around the world. No?

Ty for responding. You and the mods are doing a terrific job. I well know how hard it is...was list owner of a Yahoo group.

[Lure2]

When you come back from the pharmacy you can try apsaction.org

I thought you were from England. Where in the US are you living? I am sure someone else will answer your question about a Specialist. In any case: Good Luck!

Kerstin

[Debbweb01]

Yes where in USA are you? I'm from Long Island, New York! Yes in USA THEY ARE CLUELESS!!! Yesxour health system in toilet also! Please get back to me and there is a site we here in USA can find docs, but you must call b4 making an appointment to ask if they know about APS some do, MOST DONT!!! Not too good to have APS IN USA!!! If I can help I certainly will! Mary usually knows of some site! I just go on and find Hemotologists and Rheumotologists in my area and start the phone calls to c if they take my insurance and if they know about Apsx! Some say they do and then u go and you find u know more than them and they're wrong about a few things! Then u start again like I am! Sorry it's a difficult process, but eventually with Perseverance u get it! Good luck and keep in touch please!

[annabettina in reply to Debbweb01]

Hi Debbweb01,

I'm currently in Elvis land--really appreciate his talent, beauty, music--but don't care for all the ersatz Elvis impersonators (met one from Pakistan...it was "interesting" :).

Clueless? And with making money the priority and not the individual patient as I've found so many drs and hospitals do. To be fair, I've found most people place priority on making money and not their "neighbor". Things have greatly and rapidly changed since my youth (am "only" 58).

I love you (and the others) for helping. I really do...thank God for these Internet groups (or we would all be toast).

As I used to tell the members of my Internet group--animal thyroid with members who loved their "pets" like babies--look up, then within...and persevere. Persevere.

Thank you so much for caring.

Annie

[Debbweb01]

Hi Annabetta I'm going to look now! Sorry taking so long! Been a bit under the weather lately! Very hot and very humid here in New York! Think heat got to me!!! Lol... Tty real soon! Be well