How I know that my blood is thick!

[Suzypawz]

Went & had my INR checked at my surgery 2 weeks ago & it has only been 2.3, the nurse said the comp' advised me to still take 7 & 6 warfarin even though my INR should be 3 - 3.5!

I wasn't happy with being at this low level but I did as I was told.

She said if I started to feel unwell or any unusual symptoms to have it checked again.

For the past week I've been feeling quite ill, 'drunk' without the drink, dizzy clumsy pins & needles, shivering cold feeling in my face & head, ice cold right hand, migraine that wont go away you know the feeling!

Well....I went to the docs today & said most of this & he replied ' he couldn't understand how I would know that my INR would be low, as his 'training' as a doc' doesn't explain how I could possibly know the difference in the thickness of my blood!!' he is also worried that if I have ' an accident ' he would have to explain why my blood has been put at a level that could be dangerous!!

I do understand his worry but I told him I don't know why I get the symptoms I do that lets me know I have a low INR but I do!! it's just the Hughes with the symptoms it gives.

So he checked my INR & it now was only 2 !!

The comp' also agrees to up my warfarin dose but he is still worried of my blood being thinned to what I say I need it as! I even explained about Prof. Hughes' statement of he also likes his patients at 3 if possible,

He was the one who agreed with me a few mths back to put my INR up to 3 -3.5 because of the tia symptoms I was getting! it's as if someone has been talking with him & now hes worried ?

When I go to London on the 20th I shall ask if theres someone there that could confirm being on 3 - 3.5 so it takes the 'strain' off him, as I understand the worry if it didnt get the support he needs for that decision, but I'm there to see the neuroligist, so she may not be able to do it?

I can understand docs worry,plus he has been good to me in the past, its just that decisions like this affect my health so it's going to upset me, I dont want to feel like I'm going backwards again....10 years down the line & I'm beginning to feel like I did in the beginning

[jessielou]

Hi sue,

no wonder you down, i think the docs get scared cos they don't know very much at all about Hughes. Doesn't help us though, would it be worth ringin tommies seeing if consultant can write to gp.

Sorry you having this cr## you don't need it at all.

Wish for once they would listen to us.

Hang in there hon!

Love n hugs sheena xxxxxx

[jetjetjet in reply to jessielou]

hi pawz and jessie the dc i had when i was 1 st dia [ dr m. mcall ] in 2009 things were really going great guns, but she became very ill her self, she is the most understanding and compasionate, not only dr. but person that one could ever have be privileged to have met. i miss her to no end [s#### ] i had her establish a care plan to go on record at hosp. to keep other doc. and nurses from grabbing my blood work results and try to ajust my warfarin schedule, that can change some times every 3 or 4 daysor go the longest i can go with out testing is 2 weeks . when dr. mcall had to leave i agreed to a substitute dr. i went to him armed with info from hughes. got himto set my target range to 2.5 to 3.5 this seems to help , but not all the time, i still get bouts of migraines ,vision,memory loss, but they are less frequent. my gp .i really havnt had chance to see how he is going to be. when i agreed to go with him, he talked a good game in the locker room , i guess i will just have to see . my new nero. she i though was going to be good ,nut since my last migrain and vision i dont know . she like pawz mentioned is getting cold feet or something. pawz i am going to check into the 2 meds you gave me , i looked them up in my pill book , i dont see any problems ,but what dr. do i try to approach with them. my nero sent me a letter said no more leasons than i had before on ct scan. she neglected to make any mention at all of the 5 blood tests she ordered, iknow she was looking for some types of a possible virus. dont you think it would have been nice to have explained the tests and results i dont like being left in the dark with these things , i try to keep my one records that i can take with me to these other docs.nero wants me to do go with nothing for migraines till i go up state to dartmouth-hanover to a rhuem. speacilest. hope i make it , luck of the draw well my one typing finger is getting exhausted thanks for letting vent bbn jet

[jetjetjet in reply to jetjetjet]

hay guys i forgot to make point in hand when i started this note, i to can tell when i am off ,[ but i have only had the help and benefits of all you guys for few months, thanks ] . i would tell dr . macall i was off ,she to had her doubts, but being the type of dr. most arent she listened and soon saw i could . she apologized for doubting an gave me a series at blood lab so i could test any time i felt i was going off. now i just test , call kelley or tiffany , tell them i tested an they are great with this ,they are the only 2 nurses that can deal with me as my care plan states . can you guys get set on a plan like i have here or dont they do that in u.k.. i know it really helps me here espeacially when i was just getting to understand just what was going on with me . well many thanks again for all your help , your buddy jet

[paddyandlin]

Hi Sue,

this is really crappy sometimes we all like to throtle our GP i hope it gets better.

paddy

[Suzypawz]

Thanks guys

Its just like because its not in their medical books...its not logical!!

Its got me down, put I'll be fine...as usual!

xx

[Gadgets]

Hi Sue

I also "know" when my INR is low, I quickly discovered how a higher INR "picked me up" less brain fog, cognative, balance and generally feeling "Well again" I had to litteraly beg to get my iNR increased it took a year to prove my point and a letter from my Prof at St T. My INR range is 4 to 5. I like to be 4 to 4.5.

In my opinion you should simply ask your GP for permission from your specialist to have a higher INR.

It worked for me. Yes we understand the risk of cutting / bruising but we take care of what we do and how we do it! On one hand you will feel brighter / "better" on the other less risk of bleeding but will feel "ill"

"Little victories, little victories" (Nelson, battle of Trafalga)

Good luck

Garry

[daisy11]

Hello

Well even my Haem in South doesn't know why I get funny turns i.e. pins/needles, headache, burning sensation in head (like a pressure) numbness, that is why I am being referred to London. Yet my Rheum doc said a number of months ago as soon I am on Warfarin, then the funny turns will disappear - but in fact I am worse. It just seems I am talking to a brick wall, the neurologist whom I saw following TIA said I must keep check on INRs cos of funny turns, yet Haem doesnt know. Last night went to have flu vaccination and the nurse said she wasn't aware of low INRs and the symptoms. I feel like printing off information and giving it to her.

Like yourself - feeling as though no one understands - until I read the website here.

I cannot wait to see London. A long way but don't mind because at least I can talk to the professionals in this field.

Best wishes

[Lucky67]

Your GP should be able to get confirmation by e-mail that your therapeutic range should be 3-3.5 - if you have a postive Hughes diagnosis...and haven't had any bleeds or other health problems...

You might be able to bring your INR up by diet... (green veg vs alcohol and cranberry juice!) ...

Not sure I should say this - I was a difficult patient - had a very much on 'my head be it' attitude - but after a year or so I used to do my dosage -get the INR results from GP and only contact hospital if I had a blip I couldn't control. So say an extra mg every other day and retest in a week type of thing - major dips/rises I would get advice for...

I think you are right -your GP was having a bad day - and I don't think there is a scientific explanation why Hughes patients seemed to know their INR is low - but that doesn't mean it isn't the case ... get him to e-mail someone!

Good Luck !

[Suzypawz]

Thanks guys, he had also said that just because of websites where we all talk & know we are not alone with our symptoms is not enough proof!

I wonder if it's because we end up knowing more by talking on here before we go & ask them for help?

I will ask docs at St. Thomas to hopefully ok his decision to have a higher INR range, as I am not OK below 2.8 & cannot function properly, my doc' did agree with me when he made it higher a few mths ago ...but something has changed his mind on it now??!!!

I'm findng it difficult to even get up, wash hair in shower, get dressed.....etc! I hate this as I dont ask others for help...I have a lovely family & friends but they dont always ask me if I need any help because I do usually refuse because I AM so independant / stubborn!!

When I have asked 'somone' for help to do things they are normally too busy to do it anyway...so I do it myself & struggle then it puts you off asking again.

I know I have to go & clean / feed my furry critters & hoover through house....but I know I'm going to struggle as my body just doesn't want to move?! theres no-one else here to ask

I know the garden needs mowing, the rest of the hedges needs a chainsaw to it! but I'll have to wait to see if I'm stronger next week for that!! If I dont do it...who else will?

Thank you for listening I know we all have issues & some worse than mine, hugs to you all xx

[bernieembleton]

Write to the consultant asking them to write to your GP. so they know your therapeautic range, and not to go below the range that cause your symptoms to return. My GP,s now know and listen to me. It is a battle, but if they are good docs, they should read up about the illness.

[kathyD64]

Dear Suzypawz,

How terribly frustrating its a nightmare! i too have had such a trouble convincing haematology & my gp because of the computer says no! but happy to say i hope i have now got around it... your target inr if it is 3 or above for eg then the computer still accepts values of 2.5 upwards and doses your warfarin so like myself when i had an inr 4.4 and felt great they reduced my warfarin inr 3.4 following wk still felt good but now it needed to go up to keep at the range 3-4 but computer said stay at reduced amount so following week 2.8 migraine fatigue etc etc

I spoke to the new person at my inr clinic and said although i was told at least 3 they now put my target at 3-4 so if my inr was 4.4 my warfarin now wont get reduced.

To confirm the need to the lab i emailed this from Prof H blog:

Hughes Syndrome patients often require a high INR – especially those with headache or balance problems. In the past, this has often led to difficulties in the anticoagulation clinic, where lower INRs – for example 2-2.5 are the norm. This year at the Anticoagulation Education Day, there was a far wider acceptance of the need for better control in Hughes Syndrome patients, but also of the value of self-testing INR kits and their use in parallel with the anticoagulation clinic’s.

Hope this help i going to switch GP's as want to self test because im in a flare up and i think peri menopausal so my inr's are all over the place but like you i soon can tell when they have dropped.

Good luck kathy xxx

[Suzypawz]

yep I will contact London on Monday to hopefully get 'back up' thank you for your support & advice. xx