Sticky Blood-Hughes Syndrome Support
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Memory issues!!

Hi I have lupus and aps and at the moment am having real problems with my memory.

I e recently been changed from aspirin to clopidogrel to see if it helps.

This morning I've been to the supermarket just to get a few bits and icons out so stressed with brain ache! I can't do a full weekly shop because of pain and this memory thing but mainly the pain so have it delivered.

Went this morning for about 6 items on a list ( I'm 37 years old btw) and came out with a bad headache and brain ache from having to think so hard. It's hard to explain but it's like my brain just isn't registering right I'm looking at the list over and over and can't seem to process it. I seem to hang around in the shop for ages I'm sure people must think I'm casing the joint or something!!

Then I get to the till and she asks if I have my nectar card ( store/points card) and I just look at my purse blankly for what seems like ages, it just doesn't seem to register. I'm do frustrated by this 30 minute trip to the shop.

The rheumatologist suggested daily heparin if clopidogrel doesn't help but am reluctant to do this had it thru my pregnancys and hated it.

Is this normal for aps? I know it's not anything serious ie stroke as had normal mri few wks ago and its ongoing not just a one off, just driving me mad!

Sorry but if a long one! It's so hard to explain it!

13 Replies

H Sara

I was on Warfarin for many years but then started to get my symptoms back. Prof Hughes moved me over to Fragmin (Low Molecular Weight Heparin) and I am much better and would never willingly go back on Warfarin.



Well when I started on aspirin a few years ago I felt better. The clopidogrel doesn't appear to be making a difference for me.

I think I'm just worried that what if I don't really need heparin and they give it to me? Do they check any of ur bloods first to see if u need it? My anticardiolipin is 260 at last record started off in the 50's I think



Hi Sara.

No, they don't check your bloods they should just start you on the correct therapeutic dose for your weight and see how you feel on it after a couple of weeks or so. As I say, I feel so much better and would never go back to Warfarin.

Fragmin gives a much more consistent anticoagulation, I think, and and is unaffected by what you eat or drink.



Hi Sara and welcome. no what you are describing is not unusual. Brain fog is a sign that your blood is just too sludgy and the brain does not cope with that very well. Having a Heparin trial is a good way of seeing if going on a stronger anticoagulant would be the answer. If it is then you can go onto warfarin or perhaps Rivaroxaban providing your INR would have been under 3.

Please have hope, you are not unusual and this can be dealt with. I would however urge you to get a proper thyroid panel done to make sure that is not contributing along with Vit D, B12 and ferritin. So that means with thyroid, your FT4, FT3 and both thyroid antibodies too.

Please let us know how you get on.

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My thyroid, ferritin and b12 is all ok, my vitamin d has always been low I take supplements 3times a wk for it and is currently ok.

I've no history of a clot so they wouldn't give me warfarin would they??

Maybe I will try heparin then see if it helps.

I'm seeing my gp tomorrow but I'm not gonna ask him about it as he just brushes it off saying it's probably stress making me look stupid. I'm wondering if he actually know what aps is and that memory is a symptom?! When I told him before over the phone he kind of just said well it's not a stroke so stop thinking about it and it will go away!

I see rheumatologist early Feb so will wait til then


When you say you have had Thyroid checked did they just do TSH as that is a failed test and does not tell anyone anything. Thats why I suggest the more in depth tests. Thyroid, and Sjogrens runs with Hughes so its important to identify other coexisting conditions. If they are not then you will never get well.

You GP does not sound helpful. Id either try another in your practise or move GP's. Its really important to get understanding and supportive care. There is plenty of information on here you can take to your GP to try and educate them, however if they are the sort that either "know it all" or don't want to be educated then you will never win.

Yes you can be treated with warfarin if it is proved that is the treatment that is needed for you. So if a heparin trial worked then that would be the next logical step. Not all Dr's will be willing to do it but some will if its in the best interest of the patient.


I've been tested twice for sjorgens with the eye test thing and negative both times, tho I have dry eyes and previously dry mouth use eye lubricant daily. Also have positive anti ro antibody.

Think am gonna have to give in and try heparin can't cope like this anymore. Am getting daily headaches again probably from the constant brain ache I'm getting from this blinking memory!

Thanks all for ur replies


I am on warfarin and have not had clots etc.blood results gave result


As you say wait till you see your Rheumatologist in the beginning of February and ask for a trial of Heparin as APsnotFab and Dave suggest. You mentioned she suggested to let you try it, so that is good.

I selftest and take a Heparin shot when my INR goes too low.

Best wishes from Kerstin in Stockholm


HI, you may have to take up the medical advice given but be totally certain also to check your B12, D, Iron and Thyroid levels, so important, as low levels of these all might be trying to join the party, and cause even worse brain fog! MaryF

ps most of us do private thyroid testing as we do not trust the one size fits all unreliable TSH test!


Ok I will ask the gp which thyroid they have tested before. As I say my Vit d and b12 are ok at mo as well as iron as have ruled those out when fatigue was horrendous


They will have done the TSH and possibly your thyroid antibodies, however these are required for an accurate picture, but your own choice, and the GP will and can't order them all!

Thyroid Blood Tests

(TFT - Thyroid Function Test)

The blood test for thyroid problems is called a Thyroid Function Test. The most usual tests are:


There is a range, which is used for the tests. These vary sometimes which is why you must always ask what the range is, so that you can see where you are in the range.


This hormone comes from the pituitary to stimulate the thyroid gland into making more hormone. TSH rises when the thyroid is struggling.

The approx. reference range for this test is 0.4 to 4.5.


Thyroid hormones bound to proteins. TT4 lowers when the thyroid is struggling.

The approx. reference range for this test is 50 to 160.


Thyroid hormones not bound to proteins. FT4 lowers when the thyroid is struggling.

The approx. reference range for this test is 10 to 24


T4 converts to T3 and is the only thyroid hormone actually used by the body's cells.

The approx. reference range for Free T3 is 4 to 8.3

Thyroid UK's charity website and also forum are highly recommended by our team. MaryF

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I have times like that but they are usually in days that I have brain fog. I have learned that there are very few things in life that are worth enough to go out with brain fog. Especially because I have to drive. If we need something for dinner my husband or daughters can get it of we simply change dinner plans, sometimes we end up fending for dinner. Thats when we all just find something to eat in the house. Hope u get better or at least can find a way not to fo out when u can't think straight. Good luck. I am on warfarin and plavix daily.


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