is this 'normal'

[rolfe]

to feel very weak, clumsy, tired, drained most of the time, warm sunny days zap my energy levels too. I am taking levothyroxine warfarin, statin, and planequil sorry for being vague kind regards

[Ozchick]

In a word no! At least not all the time. Are you up to date with your thyroid tests and INR's etc? All meds at right level? Sometimes, as crappy as you feel, a walk will often have positive benefits. (There are some days I don't want to take my own advice but I force myself and always feel better:)) The other thing I'm trying is to go gluten free-a lot harder than it looks! Never realised how many products have wheat etc. in them. I have become a serial label reader.

[Lure2]

Do you have a ä Doctor who is specialized in this illness? That is important for us to have.

Usually when our INR goes too low we feel bad and have our symptoms back. Do you have a steady INR-level which is also high enough?

Best wishes from Kerstin in Stockholm

[Manofmendip]

Hi

Some of us do have spells of feeling like that, often when we are not correctly anticoagulated.

Dave

[rolfe]

hello and thank you all for your replies, my INR level should be within 2-3 2.5 being optimum it was steady for around 20 weeks ar 2.2-2.3. We have been on holiday i and I began to take Omega 3 fish oil to help with joints I have since found out that they react with Wafarin, so much so my INR shot to 3.4 the clinic are now trying to get my level back , but are having a little trouble in doing so, No more omega 3 for me I am hoping once my level gets back to "normal" I will feel better, I have heard there is an alternative to Warfarin? does anyone here take it, if so has it been helpful?

kind regards Rose Rolfe

[Lure2]

i again,

You have a low level of your INR (2.2 - 2.3). If I am under an INR of 3.0 I have to inject Fragmin. Under that level I feel very bad and get my symptoms back. I am not allowed to go under that number!

Perhaps your Doctor is not specialized in our illness as he should know we need a much higher INR? A lot of things react with warfarin. I guess you felt just great when you were at 3.4!

Read as much as you can about or illness. So very very few Doctors know what it is all about - too thick blood that has to be properly anticoagulated at a steady level. Most of us feel best at an INR around 3.5 or even higher.

I selftest every second day as I also have Lupus Anticoagulant (an antibody they test for this illness - not the illness Lupus) which makes it sometimes difficult to stay on a steady INR- level over 3.0.

Are you diagnozed by antibodies or by symptoms. I have also heard here that Plaquenil can take some time to "kick in" and differences with the sorts you take. I do not know this well as I do not take Plaquenil. If Warfarin works for you it is today the best drug for this illness. You can also take Fragminshots. The oral new drugs are not approved in my country Sweden and several other countryes for our illness. They have no anti-dot as far as I know.

Kerstin

[rolfe]

Hi Kirsten thank you . I had my I n r taken today it is now 2.1 to be honest I feel better at the lower end , rather than higher I go back again in 2 weeks I will post any changes , thank you all for your help and advice

kind regards Rose Rolfe

[Lure2]

I can tell you it is unusual to feel better on an INR of 2.1 than 3.4. Most of us wants to be on an INR around 3.5 or even higher. We get no new symptoms at that level as our blood is then enough anticoagulated!

Kerstin

[oldvillageidiot]

I found that when I was on warfarin I got quite cold even when the weather was warm. I did get tired but found that taking as much exercise (mainly walking) helped. You need to listen to your body though and not over do it. Two weeks after being diagnosed with a DVT I went on a walking holiday that had been planned before I was ill. The doctors seemed to think it a good idea as long as I took the warfarin everyday. I was only away a week so it did not affect my INR blood tests too much. I was having to use a stick at the time as I had a limp which thankfully went away after a couple of months. There are a number of food stuffs which you are supposed to avoid while on warfarin as these can affect how the drug works and stop smoking and ALL alcohol. It is just a case of following all of the advice to the letter. As with most chronic illness we can keep as well as we possibly can, it just takes self control. Weight, exercise, healthy eating should be our mantra. If movement is a problem simple ankle exercises can help and raising the feet above heart level can all help circulation of the blood.

[Lure2 in reply to oldvillageidiot]

I wonder if you have now taken a bloodtest for the three antibodies they take to see if we may have APS (Mary wrote them on her answer on your last question).?

I think yoy should do that. You are on Warfarin at present and I wonder on which therapeutic level of INR the Doctor has put you?

Best wishes from Kerstin in Stockhom