Views, please ... again

dolittle

I’m just hoping that this won’t turn into a rant! I’d appreciate your slant on this, if only to prove to myself that I’m not turning into a difficult, nosey, overbearing patient!

Went for a blood test. Am on anti-TNF jabs. The person who did the BT asked ME what tests had to be done – weren’t the last lot on the screen to follow? Got a letter today telling me to go repeat the test in 2 weeks (it’s usually monthly), so now I’m worried. Is there some major problem? Has one of the tests not been done? And again, it’s bank hooiday, isn’t it so I’ve got 3 days before I can ask.

Rang surgery – can anybody tell me why? She’s busy will ring you, but didn’t. I ring back – she’ll ring you. Got an immediate call back. Said I am worried and is there a major problem? “All it’s got on here is ‘suspected virus?’ “ “What are the results, can you tell me, please.” “What do you mean? It’s the FCB” “What were the figures?” “Why?” “I need them for my book” “No, you don’t need these figures.” “Why?” “Because you don’t, you’ll have another one in 2 weeks.” End of conversation.
Suspected that she hadn’t done an FCB. Path lab say they’ve got one but are not allowed to give me the figures.

I’m cross …. Again! I feel as though I’m being nosey and being fobbed off. Is this a way of removing my anti-TNF because of cost cutting? I’ve got to the stage where I’ve got no trust. It’s my body and my illness, surely I need to know.

What would you feel, guys. Am I being ‘picky’, or would you feel the same?

speedalong

I hate this whole secrecy, keep patients in the dark malarky. It was the same when I was in hospital - new tablets would appear in my pot. i'd ask what they were and what they were for and be told, "the doctor wants you to take them," you should have seen their faces when I insisted on knowing what and why first ....

I hope you get to the bottom of things, keep calm and make lists.

Speedalong

dolittle

Thanks, Speedalong and Babycham for your support. It helps to know others have had the same reaction from medics.

Have calmed down a bit and can now think. I'm going to the rheumy or biologics nurse after the weekend to find out what the figures are. Then go see the GP to ask if I can be ugraded into the 'need to know' group.

Thanks again. Have a great weekend.
Do

fester

Hi dolittle you have every right to question what treatment you get and query anything your not happy with, at the end of the day its your life and your body these people play with.

marion1952

Hi Doolittle

How frustrating for you!! I wouldn't think they were going to remove your anti-tnfs - it sounds like your GP just doesn't know much about rheumatology tests (my first GP, when I sat in the surgery crying because of the extreme RA pains in my hands and had not slept for days, said that 'arthritis pain doesn't normally keep you awake at night) !!! Needless to say my confidence in the medical profession hit an all time low then and I changed my GP!


Hope you can get through the next few days and then contact the biologics nurse on Tuesday.


Take care

Marion x

janie68

Hi Dolittle

Sounds as though your FCB which includes white cell count lymphocites are raised which would indicate some kind of infection/virus. So they want to repeat in 2 weeks to see if they have come down. It could also be some kind of a blip, they do happen quite often. Remember a blood test is only an indicator of what is happening in your blood at the time the blood is taken. Try not to worry, if there was something to worry about then they would have followed it up pretty damn sharpish.

Janie

dreamdaisy

Yes, I think its the FBC, full blood count. If your figures are up it hints at the possibility of infection, that's all. I don't think you have any need to fret - repeat the test as they wish. I always check that my forms are filled in properly, I know what should be on the red and green packets - I sometimes fill in the details they miss, such as the meds I'm on and copy to GP! I really don't think there's any need for worry. Enjoy the rest of the weekend. Dreamdaisy

dolittle

Thanks, DD, Marion,Fester and. Yes, I thought that it's probably the white cell count. Think the thing that's got to me, rather than the result itself, is the 'lockout' attitude; the 'what business is it of yours' thinking ..know that's a bit extrme but it explains my frustration.

I will just sit on the fence (and hope I don't get splinters) ... I'll be good - I promise, and not get myself fluffed up any more.

Have a great couple of days and I'm sorry if it's raining down your way. Every Bank Holiday - isn't it a pain.
Do

speedalong

dolittle wrote:

Thanks, Speedalong and Babycham for your support. It helps to know others have had the same reaction from medics.

Have calmed down a bit and can now think. I'm going to the rheumy or biologics nurse after the weekend to find out what the figures are. Then go see the GP to ask if I can be ugraded into the 'need to know' group.

Thanks again. Have a great weekend.
Do

Hi Do,
sounds like you are very in-control of the situation despite the medics.

Good luck next week and have a great weekend yourself.

Speedalong