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Old 06-07-2008, 10:34 PM   #1
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Rose89 HB User
CFS - What should be ruled out?

I was diagnosed with mono* and then six months later i was diagnosed with chronic fatigue syndrome.

(*the only symptoms i had were nausea and tiredness - my throat was fine, my glands weren't even up. I was only diagnosed because it showed up in my bloods, but don't many people get it like.. i can't think of the word.. umm 'silently'? )


It's been quite a while now, and i'm not overly happy with the diagnosis. I know that cfs is an exclusion diagnosis and i don't feel that they've excluded much.

I'm going to pay a visit to my GP, but it's the NHS - so you really have to push for testing a lot of the time. From reading various things around the web - it seems over there in America - a lot more testing is done.

So what have you been tested for?
What should be excluded?

I've had basic bloods, and urine. I have no idea what they actually tested for as they generally don't tell us.

So, far i've come up with: (some of these are just things i have read and then jotted down ages ago, so may be lacking in common sense/ may be ... ugh - YOU KNOW!! lol.. typical cfs - i can't think!!

-Vitamin levels? (do you they test for all at once?)
-Q10 levels.
-B12 levels.
-CRH levels.
-ACTH levels.
-Cortisol levels.
-DHEA-S levels
-Tests on adrenal glands?
-Test for addisons disease?
-Thyroid. (see this is a touchy one because on the NHS - i don't think they test ALL.. or i don't know.. but i've heard things about how NHS testing is too basic. I don't know - SOMETHING. So.. uhh... could you please just give me some information on this. I've heard T3 and T4 should be tested. What are healthy levels?)
-Kidney function test.
-Entovirus??
-I've heard of people getting MRI scans and whatnot?
-Lyme disease? (again.. touchy subject with the NHS. Could you please tell me a little about the testing for this? What they healthy levels are? etc. Thanks!)
Piturity gland disorders?
Blood sugar levels?
Auto immune problems?

Can anybody think of any more?

I know i probably just sound like a hypochondriac.. but i just want to rule everything out. I can't just sit here and let my life pass me by. I've already lost nearly 4 of my teenage years..


Also; how do you ask for lots of various tests withoutsounding like a hypochondriac?

Thanks!!

Last edited by Rose89; 06-07-2008 at 10:41 PM.

 
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Old 06-08-2008, 02:58 AM   #2
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kiya HB User
Re: CFS - What should be ruled out?

Hi Rose

Sorry to hear you've been diagnosed with CFS. It is a diagnosis of exclusion and if your GP hasn't tested you for other common reasons for chronic fatigue, he/she should be doing that testing, especially if the fatigue lasts longer than expected by being caused by the mono.

I know of no way of asking for loads of tests without sounding like a hypochondriac. You may have to struggle against common beliefs that it is "all in your head" or that you have some kind of depression that needs treating.

As someone who was "diagnosed" with CFS in 2004, spent a few consultations trying to get things done, feeling too tired to bother, being offered antidepressants I didn't need and deciding to give up on the medical profession entirely... I will say this:

Don't care what your GP thinks of you. You have a right to get to the bottom of what is wrong with you. Keep persevering with them. It's exhausting, but don't let it go on for as long as I did without having loads of tests to exclude everything else.

A CFS diagnosis means the exclusion of everything else. You will probably be able to get tests for thyroid function, diabetes and B12 levels with fairly little difficulty, if you haven't had these done already.*

Thyroid function will just be TSH (they don't test T3 or T4 on the NHS unless your TSH falls outside the normal range). The normal range for TSH is 0.5-5.5 or thereabouts. There is controversy over whether this is in fact "normal", with some medics suggesting that anything above 2 is suspect for hypothyroidism. Realistically, if your TSH is anything within the normal range, you will not be offered treatment for thyroid problems.

As far as I know, the other tests you mention aren't necessarily things the GP will send you for. If you feel really brave, just take a list of stuff you want to be tested for - otherwise, if you use a search engine and type in 'myhill' you will come across private testing for a lot of the causes of fatigue. It does cost and you have to find someone to do some of the tests (if they are blood tests), but it may be worth your will looking into it. I got my T3 and T4 tests done this way.

MRIs are something else. I'm in the middle of trying to exclude MS. My GP can't refer directly for an MRI in my local primary care trust. There is a private clinic in London that do MRIs but they are expensive (£500 or something per scan). It's almost impossible in my area to get an MRI even after seeing a neurologist. I don't know what it's like where you are and it might not even be necessary... are you getting any neurological symptoms?? I've started to get shaking and dizziness now, which is why I want this done.

*by the way, you have rights to access your medical records and have test results photocopied (you might be charged for this, sometimes £10 access fee then photocopying fees); alternatively you can just ring reception and ask what blood tests have been done.


Good luck with it all. It can feel like an uphill struggle, but if you know you're ill, please don't settle for a CFS diagnosis until they've ruled out everything else. Get a second opinion, find a new GP. Just don't accept something you're not totally comfortable with as being the reason for your fatigue.

 
Old 06-08-2008, 02:28 PM   #3
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Postie HB User
Re: CFS - What should be ruled out?

Hopefully this will help you alot. My specialist is a CFS doctor and these are the tests that HAVE to be done to exclude other illnesses so you can have a diagnosis of CFS. You can't have the diagnosis until things are ruled out.

Hope this helps you. I've had CFS for 10 years.

Very simple test is CBC--complete blood count. In CFS it's usually normal. So that means it would rule out if you have anemia. They need to rule out any abscesses, blood disorders, certain malignancies and other disorders.

Sedimentation Rate (Sed Rate): Most serious illnesses have an elevated sed rate. In CFIDS the sed rate is rarely elevated above 30 and normal is anywheres from low to 30. In many instances it's extremely low. In CFIDS it's common to see a sed rate of 0, 1, or 2.

You need Routine Chemistries done. It's to detect abnormalities in liver function, kidney function, bone abnormalities, and other disorders. Routine chemistries are screening tests that can detect disease states such as diabetes mellitus, hepatitis, and kidney failure. In CFIDS these tests are normal.

Thyroid Screen: This is important in CFIDS because thyroid abnormalities may cause fatigue and need to be excluded.

HIV Antibody--if there is a question about HIV. If a patient has received a blood transfusion in the early 1980s or any risk factors for AIDS should be screened. The symptoms of early AIDS are similar to CFIDS.

Rheumatoid Factor (RF): If you have joint pain, then you need this test to exclude rheumatoid arthritis, that causes prominent fatigue.

Antinuclear Antibody (ANA): It's found high in concentrations of patients with lupus. Up to 20 percent of patients with CFIDS have low levels of ANA.

Lyme Disease Antibodies: It has many symptoms in common with CFIDS.

You also need a Chest X Ray. It shows normal in CFIDS. It also shows for other infections, malignancies, and sarcoidosis. An abnormal chest x ray would suggest a diagnosis other than CFIDS. Sarcoidosis, an unusual disease featuring fatigue, shares many symptoms with CFIDS.

Urinalysis: It's usually normal in CFIDS. It eliminates other diseases that may cause fatigue.

So those are the basic and necessary tests. If you get all them done and their all good, then your doctor can diagnose you with CFS.

CindyLou

 
Old 06-14-2008, 11:24 PM   #4
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David 12321 HB User
Re: CFS - What should be ruled out?

how were you diagnosed with cfs by a blood test? i've never heard of this and it sounds really fishy. cfs, as far as i know, is diagnosed AFTER they rule out all other possible causes AND you have at LEAST six of the major symptoms for six months or longer along with unexplainable fatigue. i'm not sure how many times i need to say this, and every time i do i feel like it's going to sound as if i'm saying my cookie is bigger than yours...but i've had cfs and fibro for 28 years and in those 28 years i've never ever heard of a diagnosis of cfs by doing a blood test. i'm not saying this isn't possible but i've never heard of it and i'd be very very leery if i did. be careful your doctor isn't just saying you have cfs because he can't find anything wrong with you otherwise...it's become an increasing problem as time has passed with many people thinking they have it and something else is wrong that the doctor hasn't realized.

 
Old 06-15-2008, 08:39 AM   #5
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Postie HB User
Re: CFS - What should be ruled out?

David:

I wasn't diagnosed with CFS by a bloodtest. If you understood all that I wrote, these are the tests that you need done to see if there's something there before you can have a diagnosis of CFS. I NEVER said I was diagnosed by a blood test. I don't know why you thought that.

All these tests have to be done before you can say you have CFS.

I guess you didn't really read my post and understand. First of all I mentioned about my CFS specialist and if you've ever heard of Dr. Bell then you know what I'm talking about.

CindyLou

 
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