Sticky blood and depression/lethargy

[MeerB]

I arrived at this community by a rather long route.

Back in July 2014 I was diagnosed with a DVT. A big one - four inches long behind the knee. Many years ago I'd had a DVT and a PE, but came off Warfarin after a few years. Clearly, now, I need to stay on the Warfarin.

My first DVT was different. I had extreme pain when walking. I could only walk a few yards before having to rest, rather like a Flamingo standing on one leg. With this recent DVT I had pain in the leg but I could keep walking. Hence I did not think (at first) that it was a DVT. When I went to my GP, she thought the pain was muscular, but sent me for a D-Dimer blood test to exclude DVT.

Leading up to that point, I had been suffering depression. Sure, the depression had a number of 'causes' but it became worse as a result of what I felt was my body packing up. Gradually I was less able to function - becoming slower, lethargic and unable to function. At the time, I put it down to worsening depression.

When the DVT was diagnosed, I was put onto Heparin and Warfarin. Within three days of starting treatment, not only had the pain in my leg gone, but I felt much less depressed. After a month, I did not feel depressed at all. I told my psychiatrist that I was better and she effectively signed me off. And that was that. So I thought.

Then the other day I got a letter from the DVLA telling me that my driving license was revoked on medical grounds. Their decision was based on a GP report, but my GP had not seen me since June, and was of the opinion that I was still 'unwell' (Severe depression). Far from it. I was better, in my opinion thanks to Warfarin.

Shortly after starting on the Warfarin, my pharmacist (who knows me well) told me that I was outwardly much better, and she commented that it was probably due to being on Warfarin. She explained that (obviously) Warfarin thins the blood, and that in turn leads to better circulation. I came to think that it was too coincidental that within days of starting on Warfarin, my depression lifted, and the two are connected.

I am not qualified to link the two, but a little exploration on Google has led me to believe that they are connected. ie Sluggish blood can lead to lethargy etc which in turn can cause depression. If my hypothesis is correct, I think that there should be greater awareness of how sluggish blood may lead health care professionals to misdiagnose illness. In my case it has led to months of depression culminating in the loss of my driving license. I now have a tremendous battle to get my license back.

And then I found the Hughes Syndrome Foundation web site. Reading through, it seems to me that things such as migraines I do not have. However, there's been a problem developing over the past two years. I get tingling and numbness on the left side of the face. This varies and can extend from the chin to the forehead at its worst. Other times it's just the lip. My doctor is investigating it and tested Vitamin B/Iron etc - and that was okay, but she said that I have 'inflamation' somewhere in me, and she's now doing a CRP blood test.

I wonder if these things are linked?

Any comments much appreciated.

Thanks,

Pete

[MaryF Administrator]

Hi there and welcome and well done for eventually navigating your way to this forum, I am pleased you have read the charity website. This disease, Hughes Syndrome/APS does cause terrible fatigue, some people are on Plaquenil for that, it takes a while to work but can make a difference. Sluggish blood certainly if not treated can impair cognitive function alongside a host of other things You sound like you have a really good GP, if they are looking at iron and b, which is very important perhaps they would also add in a test to see how your vitamin D is doing also, and while they are at it a Thyroid panel. As professor Hughes often writes, the trio of disease is not uncommon, Hughes/APS, SJogrens and Thyroid Disease.

If in the UK there is a list of specialists who understand Hughes Syndrome/APS which your GP would find helpful as well as yourself, well worth having a referral to one of them. Best of luck as you fine tune it all. MaryF

[MeerB in reply to MaryF]

Mary,

Thanks very much for your quick reply. I've had a raft of blood tests over the past 6 months including thyroid function. And most of them have been fine. I'll wait for the CRP test, and when I see my GP for the result of that, I'll raise the APS question (and see if she's heard of it before!!).

I do feel, in a way, that testing for APS (now) is a bit like shutting the gate after the horse has bolted!!

Having said that, the face tingling is still an issue, and not a million miles away from APS.

I'll post back here as things develop.......

Thanks again.

Pete

[Manofmendip in reply to MeerB]

Hi Pete

Here is the link to the list of APS specialists that my colleague Mary mentioned:

hughes-syndrome.org/self-he...

Keep in touch.

Dave

[Lure2]

Hi, If you have got APS you can get on an Heparin-trial and start warfarin or other anticoagulation. You write that you felt well after you were put on warfarin earlier. That is what many of us have discovered.

After I started warfarin most of my neurological problems disappeared. That was like a miracle!

You also write of the tingling and numbness on half of you face and also lips. I had that before I was put on Baby-Aspirin and later warfarin. They were the start of my TIAS or ministrokes I had.

You are a very wise man. You have right that what you have felt are symptoms of too sticky blood most likely.

Please read "Sticky Blood Explained" by Kay Thackray. She has got APS herself and writes of her symptoms. I have it in pocket and it is very good. You can get it on Hughes Syndrome Foundation Charity website.

I agree in everything with Mary and Dave about finding an APS-doctor. Two things are important. To have a diagnose and an APS-Specialist. You can have a diagnose on your symptoms only (if the bloodtests are negative) if it is a doctor who knows these autoimmun illnesses that sometimes are connected as Mary has told you.

Please do not give up or feel depressed or other bad feelings now. This is something positive and you can feel much better when you are put on the right anticoagulation drug. Please do not wait to long to look for that APS-specialist because I think you need to have your blood thinned as soon as possible.

Best wishes from Kerstin in Stockholm

[daisyd]

I had severe clinical depression which improved greatly on Clexane, unfortunately Warfarin didn't work in the same way, I think the Clexane gets to the parts in the brain which has others don't reach eg damaged, to cut a long story short I am now onWarfarin and antidepressant called citalopram noticed the difference in two days.

[iskihard]

I have had a similar revelation. Had DVT last year and was put on warfarin. After starting it, I was the healthiest I have been for 20 years. Many chronic problems disappeared. My Hematologist considered keeping me on warfarin for ever, but I was concerned that it was going to have long term negative affects. But if my suspicion is correct, my body may need warfarin to function properly? Are there long term negative affects? My Hematologist said there really wasn't. But I have heard people call it rat poison.

Sorry for jumping all over this site, but this is the first hopeful thing that I have found and I want so badly to get back on track for all of the people that count on me. And for myself too.

Thanks

[daisyd]

Hi iskihard

I think you will get more answers if you made your own post

If my haematologist had suggested years ago that I went on warfarin, because it would improve my symptoms, I would have jumped at the chance

Ok rat poison yes but it's in large doses and ours is measured by blood tests so works by thinning the blood to the necessary level so symptoms disappear, more people will answer.

[iskihard in reply to daisyd]

Thank you. I was only put on the warfarin to deal with the clots in my legs. Every time I have told a doctor that I believe it had improved my health, they have basically said that's not possible. I am now very convinced that the warfarin had a very positive affect on my health overall. So it may be as simple as contacting hematologist and see if he will write me up for new scrip. But I want to understand the underlying problem so I can be proactive in getting healthy.

Thanks,

Bo

[Lure2 in reply to iskihard]

I can tell you Bo that I was like you afraid of warfarin when the doctors suggested it. 3 doctors!

When I read "Sticky Blood Explained" I understood I had APS like the doctors said so I started warfarin. It was the best thing I have done. But we are all different even if we have the same symptoms and some people can not handle warfarin. Some are better on Fragmin for ex.

I have also Lupus Anticoagulant and all the antibodies there are for test positive. I have had those positive every time in 12 years time. If you have the possibility I think you should try to selftest! I have during the years tried to learn as much as possible about my illness APS.

I have not noticed any sideeffects of it. I have read that there are not any side effects but bleeding of course. We do not bleed very easy I can tell you. But we clot more often.

Take care Bo

Kerstin

[MeerB]

Thanks to all for your very informative and helpful replies.

I looked at the list of APS specialists, and I noticed that a lot of them are rheumatologists. That's interesting because the other day my GP asked me whether or not I had been suffering joint pain such as arthritis. I haven't had joint pain recently, but, before I was on warfarin I had tremendously stiff joints in the morning. I had to walk down the stairs doubled over until my joints became 'oiled'. I put it down to age (53) at the time.I'll mention it to my GP when I next see her.

As I posted, I am currently on Warfarin and that has (I believe) played a major part in relieving not only the DVT, but also the depression.

With regard to getting diagnosed, I have read a fair bit about the necessary blood tests, and it appears they are not cheap (and you need to be tested twice - 12 weeks apart). I do not have private health insurance, and I can easily imagine that if I were to go private on this it would cost thousands by the time consultant rheumatologist fees are added in. So, I'm going to progress for the time being on the National Health Service (NHS) as my GP seems to be quite happy to perform blood tests.

I have a feeling though that if I mention APS she could well dismiss it as I was asked a few weeks ago, when discussing the tingling/numbness in the face, whether or not I have had the same sensations in the hands, feet or anywhere else. To which I replied no. This, I think, to a GP rules out quite a few peripheral nerve diseases, and APS seems to have this symptom.

Getting back to my OP, yesterday I had a meeting with my consultant psychiatrist. My wife managed to pull a few strings and email her saying I'd lost my license. It turns out that it was all the fault of my consultant because she did not reply to the DVLA telling them I was better. So she was very apologetic. Sorry - off topic.

As this was the first meeting I'd had with her since July, ie. Before going back on Warfarin, I had a lot of catching up to do. I mentioned the not inconsiderable coincidence that my depression lifted within three days of starting on Warfarin. She agreed that if blood is sticky that there can be problems associated with cerebral function.Result!!! When I spoke previously to a doctor at my GP practice the other day he was adamant that sticky blood etc does not cause depression. I'm not saying that sticky blood alone caused my initial depression, but as the blood became more sticky it caused my depressive symptoms to become worse. When I started on Warfarin, the blood was thinned enabling me to move physically, and ultimately mentally.

Getting back to the face tingling. I notice there is a recent thread about pregabalin (which I'll read). When I saw my GP about the face tingling, she put me on to pregabalin 75mg twice daily, whilst we wait for the CRP blood test. It certainly helps.That's interesting. However, yesterday was a bad day. It felt as if I had had a double dose of dentist injections in the face. It was that numb!!. That's interesting too.

I have to wait now. My CRP test is not for another week as I have to have other blood tests done at the same time that can only be done then, and they want them all at the same time.

Sorry for the long post.

Pete.

FWIW - Here is a list of medication I am on, although I do not think any of it is the cause of the face tingling as the tingling/numbness first started two years ago before I was on any of these meds.

Venlafaxine - 300mg daily - depression

Mirtazapine - 30mg daily - depression

Perindopril - 8mg daily - Blood Pressure

Warfarin - 6mg daily - recurrent DVT

Pregabalin - 75mg twice daily - Neuropathic symptoms

[MeerB]

Interesting article here - ncbi.nlm.nih.gov/pmc/articl... which explores the question of whether APS can been linked to psychiatric illness. Also, it mentions how people with APS feel generally better when on anticoagulant therapy.

[Lure2]

Hallo again,

Are you on warfarin at present? What therepeutic range are you on? Did not the warfarin help the tingling/numbness in your face/mouth?

As i told you before I had those numbness i my face before I was put on warfarin. Disappeared on warfarin. They were the start of my TIAs - ministrokes. The trouble with APS is too sticky blood!! We have to be well anticoagulated and sorted out by an APS-doctor not a psychiatrist or neurologist.

Kerstin in Stockholm

[iskihard in reply to Lure2]

Hi again, When I have my questions all figured out, I will start a new post. In the mean time, are sticky blood and APS the same thing? Or can you have sticky blood but not APS?

Thanks,

Bo

[Lure2 in reply to iskihard]

Hi Bo,

APS is also called Hughes syndrome or "sticky blood".

Kerstin

[MeerB in reply to Lure2]

Kerstin,

Yes, I am on Warfarin, 6mg daily at present with a target INR of 2.5.

The Warfarin has not helped with the face tingling/numbness. That is why a CRP blood test is being done to see if there are pointers to what might be causing the inflammation already identified. This is a workup my doctor is doing. From what I have read APS can cause 'inflammation', and that linked to my recent DVT is why I am here wondering if the numbness and the depression are all linked to APS.

Pete

[Lure2]

I can tell you there are no long termsideeffects on warfarin except for the risk of bleeding. Very few here mention that they have had a bleeding more often a clot or PE or DVT. There are other drugs to thin the blood but prof Hughes has found that warfarin has a very good effect on APS.

I am very happy that I am on warfarin because I do not want to have a stroke or PE or DVT.

My bloodtests on CRP have always been low and I have always been positive with all the antibodies drawn twice a year for 12 years now. I have APS.

Best wishes from Kerstin

[Lure2]

I can tell you that on an INR of 2.5 I did not feel well. I have 3.0 - 3.5 as a therapeutic value. I selftest every second day so I know that the INR goes up and down and you may have had lower vallues than 2.5. some days.

Most of our members need to be over 3.0 to feel good.

Kerstin

[weronikakowalska46]

What do you think about tests like this - depressiontest.club/ ? I hope that people know it's worth nothing...