Feeling frustrated

[amy1808]

Went to see my professor yesterday , told him of a few incidents I have had , fell down stairs last week and fell on Friday and banged my heads, ended up in A&E , my memory is is getting worse and I mean worryingly worse , he has stopped me driving again and sending me to see a neurologist and said is there any dementia in the family 😡. He said my NRI was fine at 3.1 . I feel like I'm going backwards again x

[Manofmendip]

Hi Amy

I agree with the previous poster, many APS patients need to have an INR higher than medics normally expect to keep it. When I was on Warfarin, now on Fragmin, I needed an INR around 4.0 to feel reasonably symptom free. If my INR fell below about 3.3 I started to feel bad and I injected Fragmin and increased my Warfarin dose until my INR was back up.

You perhaps need to pay to see one of Prof Hughes team at The London Lupus Centre and get them to support you having a higher INR level.

Dave

[amy1808 in reply to Manofmendip]

Think a trip is in order . I feel like I'm going mad with this brain fog , my life is on hold .all they keep saying is no you might have a bleed if we put it up x

[MaryF Administrator in reply to amy1808]

You must also get your Thyroid checked as this can also add to the brain fog and other symptoms if you are not in range with that, so would make you other conditions worse also, plus vitamin D and B12 and iron being checked, I agree you may have to push your range up with INR, but a good idea to check these also. MaryF

[amy1808 in reply to MaryF]

I don't have a thyroid gland Mary , I had it removed , I take thyroxine instead , o have started taking iron tablets at lunch times and take a b12 bit daily but will suggest to my dr about bit D x

[MaryF Administrator in reply to amy1808]

Yes iron needs to be 4 hours away from thyroid meds! However thyroxine does not always work effectively for everybody and the TSH test is not a very good indicator which is why I do other testing. MaryF

[amy1808 in reply to MaryF]

Had my thyroid checked today and it's bob on what it should be

[MaryF Administrator in reply to amy1808]

Was it just the TSH test? If so, not a very good test, I do mine privately which is irritating but necessary. The tests I do are far more indicative that the TSH test, I also am a paid up member of Thyroid UK, and also use their forum on here. MaryF

[amy1808]

You know when I was on 8 mg a day it gave me a NRI of 3.8 and I felt great then the Warafrin nurse lowered it to alternate 7/8 and its plummeted and I feel rubbish it goes to 2.7 some days and I feel awful

[Lure2]

Hi Amy,

I agree with Dave! I am still on Warfarin with an INR between 3.2 - 3.8 and i take a Fragminshot if the INR drops below 3.0. I selftest and feel best at an INR of 3.8.

They do not understand our situation that we do not bleed from this illness but clot.

Try to get to the Lupus Center as suggested by Dave or someone who knows about APS.

Kerstin in Stockholm

[daisyd]

Do you take Hydroxychloroquine as well as warfarin although it didn't do much for my memory it really helped with my balance and cognitive problems.

[Squeeker]

Oh don't get upset, we all have bad times. Things will improve soon I'm sure.

[Squeeker]

Hi, what is lnr please? I have been diagnosed with lupus but dizzy spells are a big problem for me and whatever you have done sounds like it has helped you. I would appreciate any advice you can give. Thanks

[amy1808 in reply to Squeeker]

My NRI should be 3-4 but ranges 2.7 - 3.5 but it's very rarely 3.5 x

[Squeeker]

Thank you for taking time to explain that. I will ask my doc about that .