# Confused low inr???!!! Sticky blood??



## madmax

I shall try to be brief! I have had 2 mcs. Decided to pay privately for testing for Hughes Syndrome aka APS. My INR has come back at 0.9 which the clinic says is very low and means my blood is clotting to quickly. They told me to go to my GP but told me no more? I am confused? Does this mean I have APS? On advice of consultant I am already taking 75mg of asprin daily. Any advice would be very much appreciated. I have trawled the internet to no avail. I am hoping that someone else can shed some light on the situation? I am starting to think that the BnB ladies know more than the docs!!!
Many thanks ladies and thinking of all you ladies going thru the heartache of mc.:hugs::hugs:


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## darkNlovely

that asprin dose may be too high not sure but talk to ut GP.


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## petitpas

I disagree, 75mg is a tiny dose. Not sure it'll affect your INR much tbh.

Your INR is supposed to be a perfect 1 but it can fluctuate depending on what you have eaten or whether you are dehydrated.

Since you have had this result, I would ask for a full clotting panel. Not just lupus anticoagulant (aka APS antiphospholipid syndrome). Now that you have had this result your gp should be able to run these tests on the NHS.

I have a known clotting gene (factor V leiden) and the day they diagnosed my lung clots my INR was a perfect 1 so it isn't all that in terms of diagnostics :winkwink: get checked out but try not to worry about it too much. If it is APS there is treatment out there for it.


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## sammy1205

In terms of clotting factor (I am anurse but deal with geraitrics, not sure how it aplies to pregnancy) but if your blood is too thick (clots too fast) then there is potential for trouble. Your bllod need to be thinner, but not to thin. I agree go to yout GP and get the test run based on this info, pregnant or not you need this figured out. you can ddevelop blood clots and if a piece breaks away, that could be BIG trouble. Have you ever heard the saying "They shot a clot" this is what they are talking about. VERY fixable, easily. you jsut have to know exactly what is going on. ((HUGS))


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## madmax

Thanks ladies for your advice. I am six weeks pregnant at the mo after 2 mcs. Docs wont test hcg or progesterone, wont give me an early scan or anything!!!! unbelievable as far as I am concerned as I have just turned 37!! I will be going to the docs and midwife on tuesday and I will be putting my foot down!! It infuriates me that I had to pay private for a test that I couldn't really afford as I knew something was wrong with me!
I will be taking the test results in with me and demanding they do a clotting panel. I am adopted and my genetic dad died very young of sudden adult death syndrome, the private consultant that I saw took this into account and that is why he suggested being tested for Hughes Syndrome, I have suffered with migraines all my life, but have not had one since being on asprin???!!!
I will keep you updated on my mission!!!!!:hugs:


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## petitpas

Hi madmax, definitely ask for help with this, maybe by being referred urgently to a haematologist.
The bad news is that while you are pregnant I do not think they will be able run the clotting panel.
Good luck and all the best with your pregnancy, hun xxx


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## tu123

Hi hun. I have dealt with INR alot and i do not understand. If you are taking warfarin or other anticlottng agents you have an INR. If you are not then INR has no meaning whatsoever.

If you are taking warfain they measure your clotting against a value of 1.0-which is just a standardized number to value a level of clotting. I am not taking warfarin so i do not have a value if you get my drift.

If you are taking fragmin they would measure your ATTP for clotting.

Dr Hughes is based at St Thomas hospital in London. can you get your GP to refer you to him? Dr Hughes is the pioneer in Hughes syndrome.


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## madmax

Well off to docs in 20 mins, he is really nice so I will see what he has to say! I am sure he will not just dismiss me worries, he didn't last time, bless. It's amazing how much nicer private consultants are when they are getting paid!!!! Obviously they really do care aswell. I will keep you posted.
Thanks ladies.:hugs:


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## Khadijah-x

madmax said:


> Well off to docs in 20 mins, he is really nice so I will see what he has to say! I am sure he will not just dismiss me worries, he didn't last time, bless. It's amazing how much nicer private consultants are when they are getting paid!!!! Obviously they really do care aswell. I will keep you posted.
> Thanks ladies.:hugs:

thinking of you ! :hugs::hugs:


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## petitpas

Hey madmax,
What did your doctor say?

Tu,
I've heard about the clinic at St Thomas's. Do you know whether they do anything different in addition to treating with heparin and aspirin? (Not asking for myself as I tested negative for APS, but my friend has it)


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## madmax

How to put this politely??? he said oh private tests, ask them about it!!! I said I have and they told me to come and see my gp for treatment! I put the results on the table in front of him and he just pushed them back to me and said, ask them! I said again I have and my blood clots too much and too quickly, surely it will cost more if I miscarry again? as you will have to send me to the recurrent mc clinic? He said, no i won't you don't fit the criteria as you already have children!
I just burst into tears and left, I am absolutely furious. I used all the savings I had to pay for the tests which have left our family rather skint!
I am seeing the mw @ 1.30pm and will be bringing the subject up with her. I am just gobsmacked.
Thanks for asking ladies and for your support as always.:hugs:


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## petitpas

Hi madmax,
I think you need a new GP! What a heartless mean person! He's also wrong! Even if you have children you still are entitled to attend a recurrent miscarriage clinic if you've had three consecutive first tri losses. If you've had a second tri loss you get to see them even sooner.

As for your tests, do you have the results? What exactly was tested? You mention you were tested for APS but only your INR result was abnormal. I would take that as saying that you probably do not have APS. But were you tested for genetic thrombophilia (APS is acquired, not inherited)? Does your test mention Factor V Leiden, MTHFR, Protein S Deficiency...? Often, all of these are tested at the same time and if they all came back as normal, then you've had all the clotting tests already.
The treatment for many of these is to take one or two baby aspirin a day and I believe you said you are already on aspirin?

If you are seeing your midwife, you can ask her to refer you to a obstetrician/gynaecologist. Your GP doesn't need to be involved at all. Generally, though, with the aspirin you are already doing the right thing. It sounds silly, but for most ladies with clotting factor aspirin is all they need.

I'll keep my fingers crossed for your baby! You do your job by taking it easy and ignoring your stupid doctor, possibly even changing to a more sympathetic one. :hugs:


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## madmax

Thank you sweetie for replying. No I was not tested for the clotting issues you mentioned, just my INR was very low. (I couldn't afford anymore private testing!)
MW was lovely, is referring me to a specialist in clotting issues, she says she doesn't want me to lose another pregnancy if it can be prevented.
The student MW works with the consultant so she knows him well and says he's ace!
She said he may well put me on clexane anyway.
She is also arranging for me to be scanned early and regularly, she couldn't make any promises, but said she will wrap me in cotton wool and try and reassure me as much as she can.
She was furious about the doc and like you said, she is not involving him at all in her decisions.
You read about it all the time on here, how badly us ladies get treated by docs, it is really a disgrace, but I will not give in!!!
Thank you so much for your advice and help, I really do appreciate it.
Onwards and Upwards as we say in our family!!!!!!:hugs:


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## tu123

petitpas said:


> Hey madmax,
> What did your doctor say?
> 
> Tu,
> I've heard about the clinic at St Thomas's. Do you know whether they do anything different in addition to treating with heparin and aspirin? (Not asking for myself as I tested negative for APS, but my friend has it)

Hi hun
One of my pals has Hughes syndrome and she is oddly enough treated with anti malarial drugs and azothiapene (anti organ rejection drug) and she is cared for by Dr Hughes.

Hughes syndrome also seems common in people with Lupus, especially where their brain is affected.

Dont know if that helps!


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## tu123

madmax said:


> How to put this politely??? he said oh private tests, ask them about it!!! I said I have and they told me to come and see my gp for treatment! I put the results on the table in front of him and he just pushed them back to me and said, ask them! I said again I have and my blood clots too much and too quickly, surely it will cost more if I miscarry again? as you will have to send me to the recurrent mc clinic? He said, no i won't you don't fit the criteria as you already have children!
> I just burst into tears and left, I am absolutely furious. I used all the savings I had to pay for the tests which have left our family rather skint!
> I am seeing the mw @ 1.30pm and will be bringing the subject up with her. I am just gobsmacked.
> Thanks for asking ladies and for your support as always.:hugs:


I would demand your money back! He didnt do anything for him to be paid IMO! If he refuses tell him you will report him to the insurance companies for exploitation. That should stop him in his tracks!

It isnt the same hun but i had 5 miscarriages before my daughter and received daily doses of fragmin throughout the pregnancy. I dont think the medical profession is fully aware as to why women have recurrent miscarriages but fragmin seems to help overall and statistically. 

Just a thought.


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## tu123

madmax said:


> Thank you sweetie for replying. No I was not tested for the clotting issues you mentioned, *just my INR was very low*. (I couldn't afford anymore private testing!)
> MW was lovely, is referring me to a specialist in clotting issues, she says she doesn't want me to lose another pregnancy if it can be prevented.
> The student MW works with the consultant so she knows him well and says he's ace!
> She said he may well put me on clexane anyway.
> She is also arranging for me to be scanned early and regularly, she couldn't make any promises, but said she will wrap me in cotton wool and try and reassure me as much as she can.
> She was furious about the doc and like you said, she is not involving him at all in her decisions.
> You read about it all the time on here, how badly us ladies get treated by docs, it is really a disgrace, but I will not give in!!!
> Thank you so much for your advice and help, I really do appreciate it.
> Onwards and Upwards as we say in our family!!!!!!:hugs:

Sorry-but this really bugs me. You should not have had an inr done and certainly not paid for it as you do not have an INR on aspirin!


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## petitpas

Tu, we always 'have' an INR, it just doesn't get measured very often. When not on warfarin it is usually '1', i.e. equal to the normal population. I think I mentioned earlier, my sister's INR has been measured is 0.9. Apart from for long-haul flights she has never taken anticoagulation medicine. She tried donating blood a couple of times but clots at the needle :rofl: I'm the one who has suffered from blood clots and my INR always came back as 1 when I was not on the warfarin. It is not a very accurate measurement and as you mentioned earlier is only really used to monitor warfarin treatment.

I do get your main point, Tu! Madmax, it certainly is a very odd test to run on its own. Running an INR is very cheap and very quick: my local pharmacy does it with a finger prick test! What on earth possessed your private doctor to test your INR without running any more in-depth tests is beyond me :shrug:

In any case, it sounds like your midwife is totally on the ball, which is great news!
Keep ignoring your GP and stay in touch with your midwife. Good luck with everything!


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## madmax

Well I was tested for hughes syndrome and the INR was just one part of the test, I think they took 6 vials of blood to test for various parts of the hughes syndrome!
Funny giving blood was mentioned, i had the same problem! Clots in the needle.
At least mw is going to have it check into, we will see.
I can only stay positive and hope that this current pregnancy is for keeps.
If not I guess at least we will get some testing done?
Many thanks for your replies ladies.

:hugs::hugs:


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## petitpas

Right! It sounds like you had the full clotting panel then. Good news that everything (except the INR) came back normal :thumbup: keep taking that baby aspirin and see what the specialist says but it sounds like you've had the full check up already and there isn't miuch else they can check in terms of clotting.


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