ALL BLOOD TESTS QUERIES

[KatieKateBlythe]

Hi Mods, please move me if I am in the wrong place, i did a search and thought this was the most appropriate place!!!! Though this may be mis guided!

It's more of a query then anything to see if the issue i have is just me and my weirdness or is in someway connected to HMS, as over the last few weeks I have realised that many of my problems are all connected via the HMS when i thought they were seperate.

When ever I am asked for blood samples the nurses have great problem getting blood from me (would be no good as a vampire's dates!) to the point that if i require any blood test i now get sent to see the phlebotomist at the local hospital. Even when I go to see her ( no great hardship as she is a lovely lady and we have lots of things in common so always end up havign a natter and giggling) she can only get blood from the back of my hands and this is with difficulty. As the issue with my Veins not beign co operative is not a new issue and I have changed Dr's a few times due to moving and each time they want to run lots of test, she has seen my arms quite a lot and each time she checks them to see is she can 'find' anything (she never can!). This has been in different weather/Temperature and different times of day as she explained these can all influence the veins. And nothing, my veins wont play! She has now said and very kindly put a big note on my file that for any blood I am to see her. As she suspect that my veins run along the back of my arm which is why they cant be 'found', and I have had years of being stabbed and ending up with bad bruises were nurse/Doctors become determinded to get blood from my arms. To the point that I used to work in a well know fast food outlet and was sent home from work one day when a customer complained about them employing 'druggies' because both arms were black/blue/purple and yellow from half way up my lower arm to nearly my arm pit with several puncture wounds! (If i was a druggies you would have thought i was better at it than that!) thanks to a over enthusiastict trainee nurse! Another occasion when this has been a issue is I was hospitalised serveral years ago and they needed to get what i think are call Main lines into me and had to put them into my neck as they couldnt get enough/any in my hands/feet or arms (Appologies for this last bit being a bit vague I have no knowledge of this period and only know from what my mum has told me and she found it very alarming when she saw the line in my neck!)

Does anyone else have these issues or is this just me?

Any thought greatly appriated

thanks
katie

[mami2four]

Hi Katie(love the name btw )

I can't guarantee that it's a HMS thing as I am yet to be diagnosed officially(more through my wanting to get my daughter sorted out first than the dr's fault but it seems to run in my mums side) but I also have terrible veins. I have spent years trying to explain to nurses and dr's that my veins are very unco-operative and even if they do manage to find one they are very wriggly and it usually collapses as soon as they put the needle in.

I remember on my first pregnancy I was carrying twins so was under the consultants care and one of his registrars stuck NINE needles into me in different places! I kept telling her that I always go to the path lab but she kept insisting that she knew how to do her job. If I remember rightly she ended up taking from next to a knuckle (or my finger?) in the end. I felt ill for about three days after that and promised my hubby I would make them stop at three next time.

On my last pregnancy I had bleeding where the placenta had pulled away a bit(that was a hellish pregnancy but my son is now 4 ) but the dr tried to put in an IV needle thingy (can't remember the name) and the back of my hand swelled up and I had blood everywhere. It was badly bruised for ages after that.

I have never had a needle in the neck but when I had my appendix out at 14( am also very vague on this time) and everytime my mum came in they'd had to move the needle. I was in for a week and came out with swollen bits all over my hands and arms.

Its good you have found someone who knows how to get blood from you. Like I said I always go to pathology but there is always someone different and I point at my one vein that seems to work ATM some usually take my advice but others like to try it their way first but always fail lol

Katie

[Spireite]

Interesting. My veins play hard to get and are very slippery or jumpy. They just won't be punctured but slip out of the way to everyone's amazement.

[Itigo]

Oh yes! I am not yet diagnosed but my veins have always been problematic. My Mum worked in the science/medical field and she used to tell the blood technicians if they couldn't do it in three goes, she'd do it herself!So after the third go, she'd say her piece and that made them even worse - haha! I had 2 knee surgeries in the last few years. The first time I got emotional when I was having the cannula inserted and told them I have difficult veins. The anaesthetist told me off and said it'd be fine, then promptly said "I think we'll try the other hand actually...."and took ages. The second operation I had notes in my file for the next anaesthetist to gas me before trying! And I still woke up with several puncture holes...

For my son's birth they wanted to put a cannula in in case I haemorrhaged like in my 1st pregnancy. It took the midwife - 1 blown vein and 3 puncture holes, the registrar Obs. - a few more holes and the anaesthetist - 1 blown vein and a "JESUS CHRIST!" as he got it in. And the worst part - he was born in an hour, no complications and they didn't even need to use it!!! My Dad commented that I looked like I'd been in 10 rounds with Tyson afterwards.

Most recently this year, I've had lots of cannulas and they've all caused problems - 2 have bled excessively - ER nurse asked if I was on Warfarin, one anaesthetist said I have to ask for a bucket of warm water each time but the others just laughed when I told them! But always without fail they get described as tiny wiggly deep veins.............

[sheppeyescapee]

I have trouble getting blood out too. I've been for many blood tests over the years and they have always been trouble, my mum has the same problems. They say things like they keep rolling or they are very hard to find in the first place. When I've had surgery I've needed a child sized cannula and poor trainee nurse was trying to use a normal one, it felt like they were trying to stick a pipe in there! Nearly jumped through the roof, most painful thing ever, even more painful than the actual surgery itself

[KatieKateBlythe]

So glad to see that it is not just me who has to deal with the nurse and doctors who think they know my body better then me!! (no offense toNurses and Doctors in the main they are lovely!)

just thought of a funny wee story about my nephew and blood/needles/nurse. He is three and was very ill as a young child and spent 6 months in hospital where he had a main line in his chest and then variious canulars to give him drugs, medication and fluids. The often had to be changed and they were always put in either his hands or feet. this is now nearly two years ago and after him bone marrow transplant he had to go and have all him 'baby' jabs redone. The nurse got the needle ready and everything to give him the jab and he sat and told the nurse that it was a needle and was telling her the names of all her different equiment and were it went on him. She then went to give him the injection in the top of his arm were the jabs are given and he gave the nurse a row because she was putting the needle in the 'wrong' place, it took a fair bit of persuasion by the nurse and my sister that it was ok for the needle to go there, but he was adament and was showing her were it was 'meant' to go ( he even had to take his shoes of to show her his foot!) eventually with a banana as bribary he agreed that she could put it in his arm. he is a bossy little thing! But for me I always see it that through all the bad that happened to him he has no knowledge of the pain and just comes out with a love of nurses, doctors and anything medical related!! Apparently he always has to be 'boss' doctor when they play nurse and doctors at Nursery!!

Thanks for all the notes it is as always good to know i am not alone!

[Stone]

Totally agree with all the above, thought it was just me!

As an ex-cancer patient I've had a lot of blood samples and cannulas (I stopped counting after the first few dozen, it's probably 300+ now). The veins in my arms are much smaller than 'normal' and more spread out - it's as if they sent out tributaries wherever they needed more blood flow rather than just making an existing vein bigger. Like Spireite said they move when struck a glancing blow (but do yield to a direct hit) and are extra-rubbery: both the phlebotomist and I can feel the pop when the needle does go in. Normally nurses can't manage (doctors sometimes can but are usually much rougher - more bruising) so I get sent straight to Phlebotomy instead! Usually they use a butterfly rather than the type with the gathering tube socket directly attached to a needle - this makes it a lot easier, especially with the smaller sizes (normally blue, I think).

I've not had many veins collapse but I do have a couple that are very thrombosed now - one just through overuse and the other because they stabbed the butterfly through a valve I do point them out to people now so they don't waste too much time. At my last set of bloods they decided on a spot and then partially guided it using the scars

It's a bit of a c**p thing to be expert at but I suppose we have to take what we're given...!

Stone

[KatieKateBlythe]

Intresting Stone, thanks for the reply

I am a weath of knowledge of c**p and pointless infomation.... Ask me who the current priminister is and I would have a clue but if i ever hapen to get attacked my a aligator and i know how to stop it!

thanks alll

[Emmie]

Just a quickie to ask whether anyone diagnosed with Hypermobility has had their CPK (Creatine Kinase levels, test to show damage to either the heart, brain or skeletal muscles) tested and whether they have had a raised level (250 or less being normal).

My daughters came in at 450 so for a child of 6 months this was considered an abnormal level but they are saying it is probably nothing to do with her being hypermobile/hypotonic and have ruled out serious diseases of the muscles with genetics- but I am wondering whether to see a specialist for a second opinion as I have been told there is usually a reason for a CPK level to be out of the normal range.

Thanks
modnote: merged with existing thread

[loosebones]

Can anyone tell me what normal Iron levels should be? I got back in this evening to a message from the doctors surgery saying that I needed to start taking iron pills as my levels were dangerously low but as I didn't get to take the call I don't know what my levels were. Must have been bad enough to make them ring out of hours though

[FLOWERPOT]

Hi, Sorry am new to this so hope i'm doing this right

My daughter who is just 18 has had HMS since she was 8. Her HMS seems to be getting worse, hips/knees, shoulders popping out, pain in wrists and fingers, feet etc. She also feels very tired most of the time and in her words 'feels like an old lady'. Our Doctor keeps taking blood tests ( this in itself she finds stressful as they cant find blood and she ends up with holes in both arms and looking like a pin cushion) and her ESR levels keep going up, at the moment they are 46. We just keep being told come back in 6 weeks and they will see whats happening. Really feel as if we arnt getting anywhere.

She's starting Uni in September and I dont mean to be a 'over protection worry wort of a Mum' but she will have to start with another Doctors practice, would we be better off to wait and see if they can be more helpful or what do we do next?

[Stone]

It may help to know that we are often hard to take blood from - as our stretchy connective tissue equates to rubbery veins that needles bounce off. She may find it easier to have blood taken with a 'butterfly' (very thin needle attached to a short tube which then plugs into the collecting container, rather than having the needle attached to the container interface go straight into one's arm) as it's easier to move the needle around gently than with the bulkier 'standard' equipment. They're often used on elderly people with difficult veins. Alternagively you could have your bloods taken at the local hospital instead of at the GP surgery - the phlebotomists (blood sample takers) do nothing but take blood from people all day every day and they're usually much more practiced/competent at it than the GPs, who only do it every now and again. It's much less stressful than being repeatedly stabbed (they usually get into a vein on the first attempt) and the GP will be getting more frustrated/embarrassed at their inability to get it right so they keep on trying and getting less accurate each time!

Also, I've found practices attached to universities are generally much better than your home practice - this is because they have a mixture of acute things (freshers' flu, sexual health stuff, sports injuries etc) and interesting chronic conditions from the various students and so can attract better / more interested doctors to the practice. Mine were great, anyway

HTH

Stone

[Fluffym]

Stone,

That's interesting. Now I know why it has always been difficult for doctors to take blood from me. I did try and give blood when I was younger but was asked not to do it again as I took such a long time for my blood to come out and then the nurses had to look after me as I passed out!

Fluffym

[mayaswell]

hi,to save time & effort I,m thinking of having my blood tests done at home prior to visiting UCL.Does anyone know what exactly I should ask to be included in the test?

[Aprilupson]

Hi, I thought I might just drop a line to talk about Rheumatoid factor test, appologies if its already been mentioned. RF or RA (same thing) doesnt always show up positive even if you do have arthritis. If this is the case then ask for Anti-CCP test (cyclic citrullinated peptide antibody), this gives the doctor a much more information e.g. rate of increase etc. I work in pathology so its quite handy GP's tend to request RF first as its known as "routine" test and cheaper. I'm not saying it doesnt work at all just studies have found not all cases have been picked up.

Hope this has been of some help

April