ALL BLOOD TESTS QUERIES

[ickle kitty]

Modnote: Title edited for clarity (please see forum rules)

Hi all was just wondering about the blood test results I got recently and what they mean with regards to my condition,

Was finally diagnosed at age 37yrs with EDS3/4, after over 20yrs of dislocations, fractures, gynae issues, fainting,
they haven't yet pin pointed which I have and I'm having a devil of a job getting reffered to a specialist in Hypermobility etc, my Rheumy takes a 6mnth break in betweeen my visits, LOL, (sheaths her claws).

Consecutive blood tests have shown, elevated blood plasma viscosity, whatever that means, is this normal for someone with our condition, and is that something to do with all the fainting and the different BP from one arm to the other?

Confused Kitty.

[barkingmad]

Hi ickle kitty,
Elevated blood viscosity means that your blood is stickier than what is considered to be within the normal range. It isnt actually related to our EDS as afar as I know.

Healthy blood is usually low viscosity which allows the blood to flow freely. Your blood viscosity can be affected by fluid intake, diet (ie high fat/cholrestrol diet). The stickier the blood the more likely that you get fat deposits building up in your arteries etc. A high percentage of fat in your blood can also make red cells stick together reducing the oxygen available in the blood, so this may have 'some' affect on feeling a bit dizzy and drowsy especially after eating heavy meanls. It can also lead to angina pains or other cardiac symptoms.

Stress can also affect blood viscosity and continued stress wont help either. I have looked this up for you and apparently if your diet is high in fat, chlorestrol, refined carbohydrates and animal protein, you can help almost detox by reducing all these foods and within a few days it can have a marked improvement on the viscosity.

I had elevated blood viscosity once and it was apparently due to lack of fluids, I havent had any problems since as far as I know, altho I do have the type of cholrestrol problems that your own body makes rather than what you eat, but I am guessing this could be a problem for me now.

When do you have to go back fro some more blood tests? in the meantime try increasing fluid intake, decreasing fat, chlorestrol and animal protein in your diet and see if that makes any difference.

Hope this helps.

[ickle kitty]

Thanks Donna that helps a lot,

I do have some hydration problems, constantly being reminded to drink more by GP etc, and they did say it wont be helping my Orthostatic Hypotension so it makes a lot of sense.

I already made a lot of changes to diet when first diagnosed, threw out chip pan, stopped taking sugar in tea and coffee down to just one coffee a day rather than several, switched to can't beleive it's not butter or other sunflower spreads rather than butter, now make my own bread with sunflower oil rather than butter and half calorie sugar rather than real sugar. Just little changes but I'm sure they have helped and didn't do my weight any harm either. Also cut portion sizes, now have 4 small meals a day instead of just two like I used to , just breakfast with lots of coffee and an evening meal usually quite late with even more coffee. Already dropped about 4kilos so must be doing something right. lol

Next round of bloods due 24th this month at next rheumy app. LOL

Thanks again KItty. will try to drink more fruit juice etc,

P.S thanks for all the info you sent it arrived this morning will send back the forms later today.

[barkingmad]

I don't know if this goes in here so if not I do apologise

When I went to have my blood tests done, I had an ANA one done (not quite sure what it means all I know is it is an autoimmune thingy I think) and mine came back positive. I was wondering if anybody knew more about it than I do? I'm not too sure what it is and what it means so if anyone could help it would be greatful and if anyone has had the same thing come back positive and if they know what it does?

Many thanks

Kay
xx

[Stone]

ANA stands for antinuclear antibody - and yes, it is a test for certain autoimmune things. It can either be negative (no antibodies found at all) or positive, in which case they measure how much is there. Different labs have different ways of doing things so have different 'normal' ranges - you can't say from a positive result anything much, it has to be taken into account with all your other symptoms and tests.

Being positive could signify anything from you having lupus to having an infection when the test was taken (and around 5% of people test positive for no known reason) so only your doctor will be able to interpret it properly for you. It may be nothing abnormal at all so don't worry about it just yet

Stone

[Finarda]

Stone's answer was exactly right - many people test positive, and a low positive number typically doesn't mean anything. In my case I started with a low number and have been gradually getting higher, but many people will have one psoitive and never have another one. I saw a rheumatologist when my doctor saw my ANA result and she basically just ruled out that I didn't have lupus etc. I have autoimmune hypothyroidism (Hashimoto's Thyroiditis) which just means that I have to take a small amount of synthetic thyroid each day, and she said it could be because of that, or it could have been because I have close blood relatives with autoimmune problems and relatives can often have a positive ANA even if they're healthy.

I would ask your doctor to explain it to you and to see whether you should see a rheumatologist just to rule out any problems.

Fiona

[C0tt0nC4ndy]

Thanks for your help I'm seeing my rheumatologist next week so I'll see if he has answers to it.

Kay

[barkingmad]

Hi everyone!
I had some blood tests last week, and the results are slowly trickling back to me. I got a letter saying I need to go back in 2 months for a repeat bone profile test - is retesting normal? Or should I be questioning why I need them redone?
When I rang the surgery, they told me all the results were "normal, no further action". One of the tests I had was an ESR level - tests for inflammation. I was 99% sure that would come back elevated, as I have a lot of heat around my spine, which I had assumed was from inflammation of the muscles. When I say a lot of heat, even in the middle of the winter, you could have fried eggs on the base of my spine! OK, so maybe that's an exageration, but it is significantly hotter than the rest of my back. I'm wondering if I could have inflammation that doesn't show up on an ESR, or if it's something I should be worried about?
I have to ring today to get my RA results, I might ask them just what my ESR level was, and book in with the doc who sent me for the tests, see what he says
In the meantime, can anyone shed any light?
Michelle

[Chloe♥]

Hey M.

The best answer is to talk to the doctor who ordered the tests - ask what the results were, what that means, what that could mean, what parameters are they based on? (If you have inflammation and come back JUST in normal range...?) Why do you need these tests again? What do we expect from them? And so on.

In the meantime... I can tell you you're not the only one to have inflammation that doesn't show up on tests. During my physical exam the rheumatologist noted areas of my body that felt hot (he was amazing, he guessed all my worst bits entirely correctly), and my c-reactive protein always comes back negative.
That's a point as well, did you have only ESR or did you have c-reactive protein as well?

Not hugely useful, I know... But remember that a good doctor will use test results as a guide, not the whole story.

[mindsquatter]

Well, I rang the surgery, and got what can only be described as the Saturday girl of the reception world! Eventually I figured out my RA results came back Satisfactory, no further action. I thought RA came back positive or negative, so i'm confuddled on that one! The ESR result was 4 in a reference range of 0-12, so on the low side of normal.

Chloe, I didn't get a c-reactive protein test done as far as I know, is that indicative of inflammation as well?

I'm debating between seeing the GP again, and holding out till I see the rheumatologist next month. In theory, the GP knows why he ordered the test, and the results he was after,but the rheumy might be better placed to interpret them
Michelle

[lil_miffy]

i think alot of people with hms/eds have confusing blood results. if you see a specialist for your hms it would be worth talkign to them about it becuase they will know more than the gp.

Iv been seeing an endocronologist for 8 months now who is positive i have an underactive or overactive thyroid. but he has done blood tests 4 times now and each one comes back with different results so he cant start me on treatment. I have to get tested again in may and see him. He thinks that iv had viruses when iv been tested before which mucked up the results but its driving me mad that its taking so long. When i saw him last he said that he just cant make sense of the results. my bloods say overactive but then a thyroid scan and symptoms say underactive. this has been going on for a few years becuase i had to get tested when i was taking lithium and every test said i have underactive thyroid but when they did the next test which confirms it it always came back normal.

I had bloods done when i saw prof b for rheumy stuff but i dont know the results so it will be intresting to see if they show anything. Have you had any more luck getting answers?

[mindsquatter]

No closer to answers unfortunately. My appt with the rheumy is on the 13th, so I can only put together a list of questions and what I think is relevant info, and hope something gets done.
TBH, I have mixed feelings about the rheumy. I know it's someone different than who I had been seeing and I think she's the one who did my nerve conduction studies 7 years ago, so I'm hoping a different perspective might get the ball rolling on further tests.

[lil_miffy]

good luck. i hope you get some answers.

[Ryan's Mum]

My 5 year old son was diagnosed last August with hypermobility syndrome. I did not like the doctors attitude towards us as she told him to get on with it! He was getting worse, sore all the time etc so i asked for a 2nd opinion. Went to see another peadiatrician (sp) who confirmed diagnosis but also said she would like more indepth bloods. His bloods came back with another low white blood count of 2.4 in January 2010, last year his white count was 3.5 and 4.7 so now they have referred him to see a blood specialist at Yorkhill. We are going in a couple of weeks. They said they don't suspect the worst but i can't help worry. He eats like a horse, has loads of energy but somedays he just wants to do nothing and gets very tired easily. Just been wondering if anyone else with hms has came across anything like this. Doc said it could be something called cycliable neutrophillia (sorry not sure of spelling). Any thoughts appreciated. Thanks Annx

[barkingmad]

Hi,
Can anyone help? I had blood tests yesterday and the docs have just rang to say My white blood count is low, as is my usual blood count, this bit is the reason had the tests as having iron probs, but the white blood count a new one on me. Tho I do wonder if it is all tied up with the EDS. Anyone know?
Hele x