Help with 2 nd blood test results please.

[DeanJ]

Hi all I hope my post finds everyone as well as can be expected.

I have received my 2nd blood test results (to confirm APS?) in the post today can any of you experienced and knowledgeable people help me with what they mean please. I will type exactly as on letter, I am not thick but would appreciate an idiot proof explanation Many thanks in anticipation Dean.

Anticardiolipin antibody IgG 13 (normal range 0to 9)

Anticardiolipin IgM greater than 80 (normal range 0 to 7)

Beta-2 glycoprotein -1 IgM 13 (normal range 0 to 5 )

Beta-2 glycoprotein-1 IgM greater than 100 (normal range 0 to 5)

[Lure2]

Hi, Are you sure the Beta-2 Glycoprotein -1 should BOTH be IgM. Could it be IgG on the first one which is 13?

They all look positive to me. This with my Swedish eye as i have only looked at my own tests here in Stockholm.

[DeanJ in reply to Lure2]

Hi I typed as on letter Lure2, I suppose it could be a typo error, it's all a mystery to me

[Lure2]

Hi,

I wonder if you now have a Doctor who is specialized in our illness and what therapeutic INR-level he has started you on? So these papers came with the post today and you have not had the possibility to talk to your Consultant? Some of the levels are very low I think.

I wish I could talk to you face to face in this case but that is not possible.

You know I have the same illness as you and we can feel quite ok when we have a good Doctor who understands us and who can give us the right treatment. The worst thing is to have APS and not knowing it with clots and even strokes and other symptoms that suddenly shows up.

I guess you will talk to your Doctor tomorrow so he can give you a better answer than me.

Please stay with us and let us hear how it goes for you.

A big Hug from Kerstin

[DeanJ in reply to Lure2]

Hey Kerstin its Dr Gooding and he is on the approved list I believe? My INR was set by him at 2-3 and last 3 readings have been steady at 2.5 and I feel fine.

As I have been feeling ok since being on Warfarin my next appointment with Dr Gooding has been set for end of May.

After a year of feeling terrible multiple TIAs and a Carotid Endarterectomy I now feel brilliant in comparison

Thanks Dean

[Lure2]

Hi Dean,

I agree with APsnotFab that you should be on higher INR-levels. At least an INR of 3.5 to be secure. I feel best at 4.0 and I have also had venous and arterial clots.

Have you read "Sticky Blood Explained" by Kay Thackray? A good book for us to understand a little more.

Kerstin

[DeanJ in reply to Lure2]

I intend to get the book Kerstin

Thanks again for advice

Dean

[DeanJ]

Thanks ApsnotFab, so I definitely have APS then?

I will discuss with him asap, at the moment thankfully I feel well and that's great after over 12 months of feeling so ill it was like I was about to depart this earth. Now I have a new job bike 6 miles a day and feel so so so much better.

I get achy bones and joints but not severe and in comparison I feel great,

I appreciate yours , Lures and others help and advice.

Dean.

[Wittycjt]

So, how are things happening? Did they raise your INR, are you on warfarin or LMWH?

[DeanJ]

No kept INR the same . GP confirmed I'm triple positive and running a series of bloods to screen for other stuff. Seeing Dr Gooding in May, my last 3 readings have been 2.5 2.5 2.6 in a 2-3 range set by Dr Gooding. Apart from the aches which are not constant I'm feeling ok. 3 mg of Warfarin keeps me at that level.

[Lure2]

Hi Deanj,

As you are now found to be triple positive (like me) with high titres also (?) and with both arterial and venus clots I am surprised that Dr Golding who should be a Specialist still puts you on the lower level which is an INR between 2.0 - 3.0.

You talk also of Cardio-issues and you do not always feel PEs etc as we often have microemboli and they are not seen on a Scan of today. That is why it is exstra important that you keep the higher INR of 3.5 - 4.0. See to it that you do not have high bloodpressure.

Kerstin

[DeanJ in reply to Lure2]

Hi Lure Dr Gooding is a specialist and I'm seeing him for 3 rd time in October so I will ask him all the unanswered questions I have, I generally feel prettygood at the moment though

[DeanJ in reply to DeanJ]

Apologies for putting Lure instead of Kerstin

[Lure2 in reply to DeanJ]

It is quite correct! You can choose which you want to call me. Lure is the name on this site (the name of my eldest daughers dog). I am also called Kerstin.

I think you should talk to Dr Gooding (which I hope understands Hughes Syndrome even if he chooses to put you on a too low level of INR as we have learnt here from prof Hughes) already in May when you see him!

We can feel ok but STILL need a higher INR. I did not know of my many PEs and I was not properly anticoagulated at that time. I had exstremely high blood pressure but did not understand it was a symptom of Hughes Syndrome and probably micro-PEs. They are so small that they are not visible on an Scan but do harm all the same. Today I have Pulmonary Hypertension and 2 leaking heart-valves.

This is a very tricky illness and we have not seen everything from it yet I am sure, but as we have too thick blood that has to be properly thinned at a high and steady level, that is for certain, especially if we have high levels of the antibodies as you probably have.

Take care!

Kerstin

[DeanJ in reply to Lure2]

Thanks Kerstin,

Dr Gooding is on the approved APS list, I intend to ask him lots of questions and make sure I'm getting the best treatment, right tests, medication and levels moving forward.

Thanks

Dean