Sticky Blood-Hughes Syndrome Support
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How do we get doctors to believe that moving blood clots can be felt?

It's infuriating! We are fed up with doctors telling us "You can't feel a blood clot moving." My husband has APS & went in for a testosterone shot yesterday. Our nurse, who believes he can feel clots, had a student nurse with her & our nurse had my husband tell what happened last year when he felt a clot go thru his lungs, up thru his head making his right side numb, then stop in his left temple & 2 weeks later, an aneurysm ruptured - the ENT who cauterized it said it was from a blood clot & it was exactly where my husband felt it stop. The student nurse said they are taught that people CAN & DO feel blood clots. Now, if the nurses believe us, why don't the doctors?

Yesterday afternoon, after having that conversation with the nurses, my husband went to the ER - he felt pain rolling up a vein from his neck & stop behind his ear, he was dizzy & his lips were numb. We see the doctor & tell him that our doctor wants him checked out to see if he has a blood clot. It was the same reply as always - you can't feel a blood clot move' you can only feel the result. Then I told him about what happened last year & he said "Oh, I believe you." Thankfully my husband didn't have a blood clot this time.

But there is a MAJOR problem in the medical field when doctors keep insisting that feeling a clot move isn't possible. If the current generation of nurses are being taught that you can feel clots, why aren't doctors being brought up to date? Granted, not every doctor is going to know everything about APS, but they should know some, including the fact that many people can feel clots move. Is this a problem everywhere or just in the USA? How do we get these doctors to get the facts?

18 Replies

Hi there

It would be a good Idea to print off some info and take it with you and if and when needed you have the proof on you x


I tried that when my husband was first diagnosed. I printed info from Professor Hughes about INR levels, that people with APS should maintain a recommended level of 3-4, while other people have a level of 2-3. Our doc walked out & brought in a printout saying people with APS should be between 2-3. I don't know where she got her info. My husband compromised to a level of 2.5-3.5. Later when I wasn't with my husband, she made a comment to him about how she didn't like it when her patients tried to do her job. What she needs is a leaflet like Sheena mentioned that will bring her up to date. Better yet would be for my husband to see a hematologist, which he hasn't seen since he was diagnosed & who only comes to our clinic once a month, & have that hematologist give her some info about APS.

That would help for my husband personally, but there are hundreds of thousands of doctors & nurses out there that need to be educated. How?



Hi hon

It's not just a problem in the USA, my inr nurse and other nurse in gp's practice listen and acknowledge that we know how feel! They have taken leaflets and are trawling websites like the Hughes Foundation site for information, in order to help treating me, also obviously they have patients having miscarriages and a young man who's had a stroke, so they very interested!! , but guess what the gp's not listen to them!! EGOS I believe!!

I think we just got to keep teaching and pushing!! Wrong when we're already fighting Hughes syndrome and other illnesses, but just has to be done!!

I hope your hubby doing ok!! Better days for all please, please, :-)

Take care gentle hugs love Sheena xxxxx :-) :-) :-)


Thanks, Sheena. That's our situation - our gp's nurse believes, but our gp doesn't. And the ER docs & nurses are even worse! At least this last ER doc ordered a CT scan instead of an x-ray like all the ones before him & he did ask if my husband had lupus along with the APS, so he had some knowledge, but not enough. I want to strangle every doc that says you can't feel a blood clot.

I've seen the pictures of the deformed blood cells of APS & when enough of those cells are lumped together, they hurt! We just have to keep telling the docs, but we get tired of arguing with them. I wish a newsletter could be sent to all of them, but that isn't practical.

Thanks again for your support.



I wonder where they imagine the pain of a DVT and a PE come from, cos they bl##dy well hurt!! I felt clot move up from leg and when it hit right lung, well!!! Enough said!!!

Is so frustrating, but just got persevere, push and try get back to haematologist if you can, at least see if they can get through to stubborn docs!!!

I hope you get something sorted!!

Take care love n gentle hugs Sheena xxxxxx :-) :-) :-)


That is a GREAT point, Sheena, of how docs don't question the pain felt from a DVT or PE. If they accept the fact that these clots can be felt, why can't they accept the fact that clots can be felt when they are moving? After all, these clots are not smooth blood cells flowing easily thru the veins, they are misshaped & clumped together, even having sharp points sometimes.

I guess it's like you said - trying to get support from the hematologist & keep fighting the docs.



I have felt 7 of the 10 clots in my right leg..move and travel, the last 3 were a big surprise.

I was being checked for what I thought was a cyst on my inner left arm/elbow area that was so painful- which turned out to be a cluster of superficial clots - that the technician decided to take a look at my legs( sonogram-since I had a history and she took it upon herself to do so, "she had a feeling") As it turned out- I had a DVT in my calf, popitiel and femoral and didnt feel those!! I was so shocked! and my INR was a 3.5!! Since I have very bad circulation in both legs, many leg spasms I get checked often, I don't wait anymore for" a feeling"- In my case I can't take chances and wait.


I'm glad that you don't wait to get checked out & that there was a suspicion of more blood clots when your elbow was being checked based on your history. It's great that you have someone that listens to you.

Maybe all medical professionals will listen to us someday. But as long as they don't, many with APS will be reluctant to seek medical help because docs say they can't feel these clots & that is very dangerous.


I also wanted to add, that my husband still has blood clots when he has an INR of 3.5 or higher, just like you. So, a "recommended INR level" doesn't stop clots.


I absolutely agree. Therapeutically my INR is to be @ 3.5 and was at the time of my last DVT in March.


I am now on Fragmin I started it july 2011- I had been on Coumadin since 1992 and during that time I have had 10 or more DVT's- So a Doctor at The Hospital for Special Surgery in New York City recommended that I switch to a LMH-( Low molecular weight heparin)Since mostly all my clots happened during a high or decent INR.-But I did show on a sonogram a small superficial clot in my left arm- cephalic vein-just last september while on Fragmin -


So you are taking Fragmin & LMH together? And they seem to be controling your clots better? You mentioned you would still have clots with an INR of 3.5 - have you had clots with a higher INR? I ask because my husband can have an INR of 4 & still feel clots, yet our doctor will reduce his warfarin to keep his INR at 3.5 or lower because she doesn't believe he can feel the clots moving. I wish we could convince her that he does feel them. Thankfully his dosage hasn't been reduced for the last 6 months because we discovered that if he takes his warfarin at night, he maintains a fairly level INR when he is checked in the morning & now he is only checked once a month.


Fragmin is a LMH- So far I have had on very small superficial clots in my arms no major deep vein clots with the LMH (Fragmin)

I have had a Doctor in the past want me to have an INR of only 2! and I fought with him! so I got a new Doctor! Now I have a Hemotologyst that prescribes my Fragmin so I don't have to fight with a General Practitioner anymore-

The only way someone is going to believe us if we feel clots is if they have one themselves! Unfortunately we cannot rely on certain Doctors to believe us when we say we feel our clots forming and moving-

Remember Warfarin/Coumadin is affected by food and beverage intake-so becareful -That is why INR must be checked regularly-

Now that I take Fragmin I do not need to check my INR or worry about eating thing with Vitamin K like I did when I was on Coumadin.


I'm going to look into Fragmin & tell my husband about it. It may be an option for him.

I too was very angry with our GP when she wanted my husband to have an INR of 2-3 because he went below 2 a number of times despite my arguing with her & she finally raised his "suggested level", but I still say it is too low every time I am called with the results. Of course, I'm told that our doctor says it's within range & won't change it.

I know that not everyone feels clots moving, so many doctors are going to remain skeptical, but as Sheena brought out, NO doctor questions the pain felt from DVT or PE's. As our most recent ER doctor said "You can't feel the clots moving, you just feel the result." Well, DVT's are painful because they are moving. Perhaps 50% of people with clots feel clots move, some feel it as just a little pin prick, some feel more pain, but they do feel the clots move. The best thing would be to have a hematologist to treat everyone with APS, but that isn't always possible. The next best thing would be getting doctors educated. No one needs to argue with their doctor like this.

As far as food & beverages/vitamin K, we are very careful with our diets & make sure we maintain a consistant intake of foods that have vitamin K & he watches what he drinks closely. We never take in a lot, then have none - always a regular balance. That's probably why his INR is always within .1 - .3 difference every month.

Anyway, I'm going to remember Sheena's comment the next time a doctor or hospital nurse says he can't feel a clot moving & ask them to explain why a DVT clot can be felt if no clot can be felt.


Go for it!


Thanks. Maybe if enough of us ask that same question, doctors will stop & think about it & not dismiss us as being stupid! Let's ALL go for it!


I came across this thread last night after I was nearly 100% positive I "felt" a clot come up on the inside of my thigh and into the groin area. I hadn't taken my lovenox yet but yet couldn't move from the couch to the washroom to get it. The pain was so bloody excruciating I nearly vomited.


Hi Silverdoll. I'm sorry I didn't respond sooner. Things have been hectic this week - my husband had surgery & my own health has been down as well.

Anyway, how are you feeling now? Were you able to get checked out for the clot, maybe with an ultrasound since it was in your groin? Please don't put it off. I'm sure the pain it caused you is enough to encourage you to seek treatment. I hope beyond hope that you someone who will listen respectfully & not think you are crazy. You don't need that. None of us do.

Please let me know how you are doing.


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