? DVT

[Marylou62]

About 4 days ago I started getting cramp in my calf (never normally suffer from cramp)...it is not swollen or red and doesn't hurt when I am sitting down...but when I get up it is very painful...when I walk for a while it eases up...now lying here typing it is aching...?DVT

How are you marylou? Did you go to out of hours? Hope all's ok.

Thumbwitch No, not at all :( Although the emergency team were great, the ongoing treatment was quite poor and not at all joined up. I ended up pointing out to my warfarin nurse that my booklet said I should take it for a year and it was now 18 months on with no end in sight... I did ask my GP and a doctor in the warfarin clinic if I should have some tests because of the circumstances- not overweight, non smoker, never actually been on a plane! etc and they said no. I was chasing people and trying to find out what treatment I was supposed to be having from the time I was discharged.

It's a pretty sensitive subject for me to be honest :/

Marylou how are you?

Firstly I would like to say a massive thankyou to you all...I knew I should get it checked but what with all my other problems and the publicity about Drs/ A&E being over run with non urgents, I was I suppose just asking...you know...not quite wanting to believe it was anything serious...just back from hospital now and although I haven't been scanned the Drs said the blood test indicates that it is a DVT...I have had an injection and need another tomorrow then the DVT clinic on Monday where they will scan me...Its killing me now ...I suppose its all the prodding and poking...again, thank goodness for the NHS...My biggest worry is I might have to stop the HRT? I was there ages as they had to check the warfarin/heparin because I have had a bleed in both eyes and a retinal tear recently... Thankyou all so much for caring... x

Wow, I am sorry you have this but glad you have been diagnosed. I would stop your HRT now it is contraindicated and certainly wouldn't let any of my patients continue it.

positive thinking ,
just because you have a raised d dimer -doesnt mean its a clot
but theres no harm in treating with the injections until they scan.
i had the same symptoms in nov ,but also breathless and dizzy and pain in chest.
the d dimer was raised but the ct scan was clear-

they kept me in ,and treated it as if it was a clot until the scan.

I'm sorry you've had such a miserable time, but immensely glad this got diagnosed before it reached the point where clots start travelling around and really causing problems.

Thankyou musical....I know... but I've been having such a hard time with the menopause..Hrt was wonderful from the 1st tablet...but I know...and I need to stop smoking too! (only smoke about 6 rollups a day but this is the kick up the bottom..)

Thankyou Silver and wfrances...yes DR did say might be nothing...got scan on Monday...I will keep you posted!

Yes, I meant to say wait for the scan. But stop the smoking anyway

Yes musical...I will...promise!

Damn....maybe, just maybe some one on MN is a Dr or a nurse who works in this field...I haven't had much luck healthwise recently and have been to Dr or A&E quite a lot...eye bleed being the latest...If someone says that if it IS a DVT the pain will NOT go away, then I will know its not a DVT

I'm a doctor and I never give out advice online to anyone. And even if someone said they were a doctor, how would you know and why would you believe them.

So you've been to see someone and now it's in hand!
Good. Hope you're on the mend.

Very pleased you went to get it checked out, sorry it appears that it might be a clot but better to know! hopefully the scan will sort it out for certain.

Unfortunately it is likely to mean the end of the HRT - you will have to ask or look into alternative ways to manage your symptoms :(

Silver - that's really pretty bad about them not following you up at all. :( Maybe try a different GP? Or is it just your area, do you think?

I was tested for thrombophilia despite never having a clot because my uncle suddenly died of PE, so my Dad was tested and found to have Factor V Leiden. So do I, and my sister (yay us ) - but at least we knew before we got pregnant, so it was managed throughout with clexane jabs. Not nice, but better than potentially getting a clot!

Damnbamboo...you are so right in everything you say..I am an x nurse so should know better!! But...I am sick of being a pain in the bottom at the Drs...I have a good relationship with mine but I still feel she thinks 'what now'...I have been diagnosed with two pretty rare and obscure problems after 'knowing' things weren't right and back and forth etc...I feel a bit of a hypochondriac at the moment and I'm not! The menopause has knocked me for 6 and I am struggling...I tried and spent a fortune on every type of alternative stuff Thumb...but still had up to 6 hot flushes a night...I am a nanny and really need my sleep...but I know I will have to stop the HRT...thanks again everyone, I will keep you posted about the scan tomorrow..

Thumbwitch Honestly don't know. It was 4 years ago in December, so feels a bit late to follow it up now. Apart from A&E, everyone involved behaved as though it wasn't a big deal. It's only when reading my notes that I found out how serious it was and how lucky I am to be alive! If my husband hadn't made me call 101 'just in case' I probably wouldn't be.

I don't want to derail Marylou's thread by talking about myself, but there are a lot of things I've still not come to terms with, especially as I felt so much pressure from day 1 to be okay for my family and as the medical staff treated it so casually. Apparently I had a consultant, but I never saw her.

Anyway, Marylou, if the scan does bring bad news, use my experience and press firmly for treatment plans, further testing and anything else you need including support! Keep yourself informed and don't let people brush you off just because they see DVT patients every day.

BTW I had bilateral pulmonary embolism, with two large clots and multiple smaller ones in each lung. So maybe that does come up fairly often and I'm being a drama queen!

Noooo, I wouldn't say you're being a drama queen at all, PEs are of course potentially lethal! But once they've spotted them and started treating, far less likely to be so (thank goodness!).
It's not too late to check to see if you have one of the conditions that cause thrombophilia, most of which are genetic and hereditary, because it's information that could be important in terms of (as we can see here) HRT, travel, pregnancy (not necessarily yours but any DDs you might have), OC Pill (ditto). 1 in 20 people have the Factor V Leiden gene mutation, for example - that's pretty common! And there are a few others, almost as common.

It would be reasonable even now to say to your GP that you think you should have a thrombophilia screen - unless your PEs came from somewhere obvious, which it doesn't sound like they did. My MIL had multiple PEs (little ones) after having bilateral knee replacements, but she was in her late 60s and relatively immobile for some time afterwards - afaik she doesn't have an actual thrombophilia condition, but the op was sufficient reason for her to have made the clots.

Sorry Marylou - hope some of the info is useful for you too. :)

I don't have a daughter, but I have a sister and she does. Which is why I thought a test might be done really.

Thanks for your support. There definitely wasn't anything obvious to cause the issue. I will give serious thought to seeing if I can get a test (including working out which Dr at my surgery is least likely to be dismissive). Do you know if it is expensive to the surgery or PCT (which I know we don't have now but can never remember the new name for some reason)? I did vaguely wonder at the time if it was cost related, as of course warfarin is an extremely cheap medication. On the other hand, I had an A&E visit by ambulance, 2 days in hospital, a scan of my lungs inside a massive Stargate machine thing and an ultrasound scan on my heart and legs, so that would not be cheap at all- but probably covered by a completely separate budget.

Sorry, rambling... I never get to talk about this IRL.

Marylou, really hope you will keep us updated on your situation and keep seeking support here. My best support in early days was from a FB group for people who had gone through the same sort of thing and it was so helpful while I was having to be strong and pretend I was practically well already to people in the real world.

Yes, it could have been a cost issue, but shouldn't have been because the cost of treating you could be higher!
The full thrombophilia screen is fairly expensive yes, which is why it's generally not done unless someone has a family history of DVT/PE (which I did), or has already had a DVT/PE (which you have). They won't routinely screen people otherwise, not even girls going on the OC pill, despite the higher risks (the risk is not THAT high, but it's 4x higher if you have a thrombophilia condition than if you don't - this goes much higher in pregnancy though, iirc).

When I worked in haematology (oh the irony!) a standard full blood count was around £4 (a long time ago) and a thrombophilia screen was about £80, iirc. So yes, it is definitely more expensive but should still be done if the history is there.

Have a read of this:
www.nhspathology.fph.nhs.uk/Core-Service/Test-Directory/Haematology/Details.aspx?tID=517
It gives the current guidelines as to when a thrombophilia screen is indicated, so might explain why you haven't been picked up for one.

I fulfil the under 40 bit of course... I also get phlebitis occasionally, but have always treated it with OTC cream, because my mum gets it too and that's what she does. So that is probably not in my records!

Thank you again. It's interesting to know the relative prices, even if they are from a while ago! I was wondering if it was £thousands. I kind of feel my future health is worth £100 or so!

SilverDragonfly1

I think you should see your GP and ask for a haematology review.

I work in this field and the stories I could tell of patients slipping through the net, getting incorrect treatment etc would make your hair stand on end, honestly.

Silver ,frogs and thumbwatch...I am absolutely ok with you 'derailing' the thread...if it needs to be said, then say it...I thankyou again for your concern...went to acute GP and had the 2nd heparin...it sure stings...I am an x nurse but childrens...I remember people being admitted for DVTs and half expected to go in...in no way do I want to start an anti NHS rant but I was surprized the DR (lovely lady) didn't give me more advice...I asked if chest pain and SOB would be 999...'no, just make your way in' ...sod that I think...999 it will be....I am actually more worried about my eyes...I have had a small bleed in one eye and a significant bleed with a small tear in the other...left with a dramatic floater which has now gone...thank goodness...very quiet in AGP so had a chat with another DR...he was quite reassuring that if I did bleed I would get urgent treatment and not to worry...I do agree that its not seen as the emergency it was 'in my day'!...got DVT clinic tomorrow and had a chat with my DM who is retired community sister...got a list of things to ask...she was surprized at how calm I was....but a bit...'oh well...another thing'! Keep this thread running as obviously I've been on phone to friends dramatically telling friends/family about the next drama in Marylous long dramatic medical history!!! All were in the dark about signs and symptoms...if one person reads this and passes it on...Thankyou again...will keep you informed...

Rereading this Silver...can I just say you sound like you are still not 'over' this...I say that as someone who had counselling and a meeting with medical staff to 'go over' what happened during my DSs birth...when he was 4....it still rears its ugly head now and then (he's 17!) but actually talking about what happened, what went wrong etc really helped...I was diagnosed as PTSD and like you I was expected to cope...horrible time ..I really hope I haven't offended you but it isn't too late to get answers...which might help you to 'come to terms' with what happened to you....because of you I will definitely be on my guard...thankyou.