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"Blood tests don't always tell us what's going on"

(25 Posts)
loveyoutothemoon Thu 06-Aug-15 18:54:08

Has anyone ever been told this, had negative tests and there's clearly been something wrong with them?
Thanks.

Mrsmorton Thu 06-Aug-15 19:04:42

A bit more context would help I think.

Blood tests are a snapshot so for example, something could be increasing, decreasing or staying the same. One blood test won't show that. There are dozens of very specific tests that can be carried out, sometimes more specific tests are carried out if an initial one doesn't show anything.
What's the problem OP?

ArendelleQueen Thu 06-Aug-15 19:51:07

As above, it depends on the condition and the bloods that are shown.

hiccupgirl Fri 07-Aug-15 09:21:27

Depends on what might actually be wrong as an underlying cause.

I've been unwell for nearly a year - persistently anaemic, losing weight and just not right. The only thing that showed on blood tests were the anaemia until May when inflammation markers started showing. By then I'd already had a kidney cyst found by ultrasound. So in my case, blood tests didn't show all that was going on.

DH has fibromyalgia and this will shows completely normal blood results every time.

loveyoutothemoon Fri 07-Aug-15 14:30:03

Hi
I've had general blood tests (repeated) and specific ones, for auto immune diseases etc for the following:

sharp chest pain
headaches
unusual rashes
3 toe nails coming off
heal tendon pain
feeling shattered
hair loss
joints catching in knees
bad circulation
raspy voice
eye pain

All of these I've had for years now.
My recent blood tests all came back normal but my GP has asked me to come in as she said bloods don't always tell us what's going on.

I'm so frustrated.

loveyoutothemoon Fri 07-Aug-15 14:31:46

I'll add that with my heel pain I've got a painful lump.

loveyoutothemoon Fri 07-Aug-15 16:12:10

And to add to the list, carpel tunnel and raynauds

loveyoutothemoon Fri 07-Aug-15 17:11:59

And heartburn and regurgitating food!

YeOldeTrout Fri 07-Aug-15 17:32:27

I feel pretty sure some of those are unrelated. Which problems do you find really screw up your quality of life? I'm guessing the headaches or chest pain, and rest is manageable if annoying?

RawCoconutMacaroon Fri 07-Aug-15 17:40:26

With that list of symptoms, I assume blood test for Ceoliac and thyroid diseases have been done?

If you've had a negative Ceoliac test, you might want to try a gluten (and preferably completely grain free) exclusion diet for a couple of months to see what happens (there's a fairly high false negative with the blood test). If you are interested in giving that a try, google "whole 30" or paleo exclusion diet (or read Marksdailyapple blog), as these will give you info on what to eat to ensure you are getting plenty of nutrition.

loveyoutothemoon Fri 07-Aug-15 17:56:14

Hi, thanks.
I've had thyroid tests but not this last time. The doc thought it was uneccessary to test for ceoliac as my poo is ok (not white etc).

It's the complete exhaustion I can't deal with, not all the time but enough to interfere with my life. And the chest pains are really painful but not all the time, just every now and then

WhenIGrowUpIWantToBeAPenguin Fri 07-Aug-15 18:06:18

Have you been tested for anti-nuclear and anti-centromere antibodies as part of your tests for auto-immune? I have CREST syndrome and the fatigue, Raynaud's and chest pain might be indicative of that. Disclaimer: am most definitely not an expert!

loveyoutothemoon Fri 07-Aug-15 18:16:02

I have confirmed osteoarthritis in my spine, but nothing else confirmed yet. Very frustrating.

RawCoconutMacaroon Fri 07-Aug-15 18:21:21

No test because your poo isn't white?!?! Seriously? Utter bollocks!
I think you need to push for that test.

Unfortunately I wouldn't advice cutting out grains before having the blood test as antibody levels drop fairly fast if you stop eating gluten, so you may test negative.

If you wanted to do a quick, and fairly cheap test and your GP isn't wanting to do one, amazon sells basic gluten blood tests for a few pounds (if you get a positive you are supposed to see your GP to do formal testing).

Some of your symptoms jump out at me (for Ceoliac I mean). The headaches, strange skin rashes and heal pain can all be related to gluten (odd about the heal pain but it seems to be at least partly autoimmune in some people). The eye pain too actually...

loveyoutothemoon Fri 07-Aug-15 18:22:10

whenigrowup had a lot of the anti tests done. I've got a copy of the tess I had done. It says anti-nuclear but can't find anti-centromere but at the end it says (etc) so it could've been included?
I'm sorry about the CREST. How long did it take to get a diagnosis, was it straight away and what are you symptoms?

RawCoconutMacaroon Fri 07-Aug-15 18:23:06

... And the digestive problems and carpel tunnel that you added on later in the thread! I really think you should push for Ceoliac testing smile

loveyoutothemoon Fri 07-Aug-15 18:24:24

Thanks rawcoconut
I didn't know that about the amazon gluten test. I'll definitely consider that.

loveyoutothemoon Fri 07-Aug-15 18:25:45

rawcoconut do you have ceoliac?

IRememberWhenRockWasYoung Fri 07-Aug-15 19:31:03

Have you looked into Stills Disease?

Quite a few of those symptoms match up.

DD has it, sometimes during flares her ferritin count in blood will be high (or very high), sometimes it still shows within the normal range.

loveyoutothemoon Fri 07-Aug-15 19:38:11

I've looked on amazon and the tests are over £20!

I'm going to request another thyroid test and push for the ceoliac one.

loveyoutothemoon Fri 07-Aug-15 19:41:53

What happens when bloods keep coming back normal, what is the next step?

YeOldeTrout Fri 07-Aug-15 19:56:44

£20 is probably less than what these tests cost your GP.

RawCoconutMacaroon Fri 07-Aug-15 20:26:15

Hi op,

Sorry, to me £20 didn't seem a lot when it costs a fair bit just to travel to my GP (rural location). Blood test showed antibodies but not at the level that would give a positive. So I guess I don't have it (officially anyway) but I clearly react badly to all the gluten containing grains (and I would say worst is Rye and Barley for me).

Anyway, I went gluten/grain free (Paleo), some years ago and had huge improvements to health, skin, headaches, ibs/acid and balance issues and so, on all resolved and return if I accidentally eat something I shouldn't.

loveyoutothemoon Sat 08-Aug-15 13:40:34

That's great rawcoconut, that you kinda got to the bottom of it and you are better. Thanks for the tips smile

loveyoutothemoon Sat 08-Aug-15 20:27:30

whenigrowup do you get hard/tight skin with your CREST?

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