GP thinks I have chronic fatigue...Im not convinced...any sufferers out there who can add their thoughts??

[Athyriumm]

I hope I'm not simply in denial, but I'm not quite convinced by the GPs diagnosis. Having read around, many things do fit - horrible fatigue, brain fog, aches and pains...but equally, many don't...I don't have any flu like symptoms, no sore throat etc, Im sleeping ok, I am still just about coping with life. I still walk my dog for instance, albeit slowly and with a rest half way; I can still mow the lawn, altho would need a lie down after. I have a part time admin job that would be easier if I could concentrate, but I am coping. Does this sound like CFS?? Originally GP thought fibromyalgia since I have had long term issues with pain...but because the fatigue has got worse lately I am doing a lot less (Im normally very active - gardening, hiking, house renovations..) and so the aches have eased off. I've had so many blood tests done it's not true, but everything has come back normal I dont know what to think or do next. Can anyone add any insight?? Thanks.

It sounds pretty convincing for CFS. The only absolutely required symptom is post-exertional malaise, and with sleep, it's more a case of do you feel good after a good night's sleep or do you still feel terrible?

I'd say the whole point is that bloods are normal - I think there's research into a diagnostic test but it's a way off. It's tempting to supplement things and see private doctors and I get that because it's part of the grief for the life you had. But normal ranges are ranges that are ok - and so you may find you take a load of iron and your ferritin won't change because your body has all it needs. I'd spend the time and energy reading if I were you...

Helpful diagnostic criteria to read might include the Canadian Criteria but you'll find other links on that page and be able to read extremely well written accounts of research and such management as there is.
I'd also get a copy of Dr Sarah Myhill's Mitochondria not Hypochondria. She is controversial in some areas but this really is the best description of how CFS develops and is then maintained.

Chronic illness is gutting - most of us don't get down to 20 on the score that InMySpareTime is talking about which is here though there are other similar ones, but have been at maybe 30-40 and even that has been hard.

There are good support forums and blogs too - it depends on what you need. I hope you can keep getting out with your dog and keep coping with work, as you adjust to the long road ahead, which is so hope will lead to you recovering.

Those that asked - b12 came back as 430 (range 180 - 900) which seems ok?

TSH ok too, 3.3 (0.27 - 4.2)

This is the problem - everything seems fine, except for how I feel!

Have they tested you for coeliac disease? That presents in similar ways in some cases.

IME could be thyroid or chronic fatigue - obviously other things it could be. Just adding carbon monoxide poisoning to the list... not sure of the symptoms but I think one is feeling tired all the time.

Have they checked for that at least to rule it out?

OP so sorry for all you have been through lately, sounds so sad, no wonder you are suffering physically .

How old are you? Have you had your hormones checked? Many of those symptoms are peri-menopausal symptoms. Bear in mind that not all women have the same peri-menopause symptoms and some have none at all, but some have lots including all the symptoms you are describing. Taking hormones (either birth control pills or HRT depending on your age and history) can help with these.

I am currently feeling similar but with additional neurological symptoms. I have been referred to a neurologist but have to wait two months. Someone mentioned Lymes to me although I have no recollection of a tick bite, I work outdoors. My GP is reluctant to test for it, I was just wondering how you go about getting a Lymes test? I have had other blood tests and everything is normal. I used to be very active, run and mountain bike for miles, now I struggle to work and need to sleep when I get in. Its so debilitating it just seems strange not to test for something that could be treatable.

I have had both ME (for 4 years) and Fibromyalgia ( for about 20 years). They both have fatigue I found the fatigue very different. With the Fibro it is more like exhaustion and foggy brain a bit draining. With the ME it is heavy, like the life force is draining out of you, achy like flu without the temperature. I never had a sore throat.

other symptoms:
FM widespread changeable pain sometimes electric like other times muscular. Also extreme sensitivity to touch
and intermediate insomnia. lots of migraines and headaches.

BOTH have links to IBS, food sensitivities, light and noise sensitivity, low mood, brain fog.

Both are also on a spectrum. you can be really ill and barely leave ypur bed or manage work. Or just have little flare ups so you could have ME. Ignore at your peril as you are probably in the early stages. if you look after yourself now before it properly beds in your recovery is much more likely.

The most amazing thing I ever did was stop eating wheat entirely. Not even a molecule or I am ill. Also lots if slow styles of yoga.

Also with the ME resting when not tired and not pushing through were key to recovery.

On the other hand with FM pushing through the pain and doing running and other sport was a game changer.

Good luck hope you get better soon

PS I no longer have ME!

If I were you, I'd get a full thyroid panel done privately. A TSH of 3.3 may be within range, but it is far from optimal. I'd wager that full testing will show you to be hypothyroid.

Sofia - Im on HRT so assuming thats no longer an issue. I hope!

AForest - I also work outdoors so have just ordered a Lymes test on line. I did have one wierd bite last year...but it really hurt, so I dont think it was a tick (I hope) Got the test from a company called Medichecks, but there are plenty of others if you google private blood tests.

Yestermo - I can relate to what you say, what I had come to think of as fibro fatigue was far less debilitating then what is happening at the moment, something has changed So pleased to hear that your ME has gone!

Natoth - that was actually my first thought since my mum and niece are both diagnosed with hypothyroid and I know it can run in families. My results back in June:
Free T3 - 4.17 (3.1 - 6.8)
Free thyroxine - 12.6 ( 12 - 22)
TSH seems to be up and down a bit, has been between 2.5 and 3.8 in the last 2 years. Tho I have to say, it does seem on the whole to be on the up so I do intend to check it regularly.

Thanks again for all the comments, it's really helpful.

I agree that this may be a subclinical thyroid issue.

Having recently suffered horrendous fatigue I saw a dietitian and cut gluten from my diet. My tsh levels and anti-tpo antibody levels have since fallen and I feel way better. Ask your gp to check your anti thyroid antibodies op!

Having seen your thyroid results now I am satisfied that this is a thyroid issue. Your actual thyroid hormones are very low, low enough to give you symptoms like the ones you report, but your TSH has not risen as one might expect.

With a family history I would expect you to be positive for antibodies. Have they been tested?

Yes I believe so. Are these the ones you mean?
Thyroglobulin antibodies - 10 ( normal is anything below 150)
Thyroid peroxidase antibodies - 12.4 (normal, anything below 34)

Thanks for your input NaToth - is there anything else I should try to get tested?

I have your symptoms, I originally went to the GP for a thyroid test. It turned out I have Lupus.
A lot of auto immune diseases are very similar and cross over with each other.

Bathsoup - I think gluten free is my next move, I've aleady cut out sugar, booze and caffeine and no change other than sleeping better (but still exhausted )

I think why it's so hard to know which way to jump Cocolapew, theres so much overlap in symptoms with so many other conditions! Have been tested for lupus tho so not that.

I was told I couldn't be diagnosed with chronic fatigue as I was still working, sounds like your gp hasn't had that memo! I would suspect thyroid, even if your tests have been normal, as in my case I've been having the symptoms a good 3 years before the bloods showed anything odd. And due to family history I was convinced that was what it was.

I have had hypothyroidism for 20 years. With results like yours they push me to take more thyroxine so you definitely need something doing there!

Also get your morning cortisol tested - for Addison’s disease. The anaemia and thyroid issues would go hand in hand with that (I have all 3 and it’s very common to have more than one autoimmune condition). Cortisol wouldn’t have been done as part of the standard blood tests as Addison’s is a very rare disease to have.

Thanks I'll order one from medichecks. Best of luck OP, it's so frustrating when you don't know what is wrong.

I have never had a positive blood test for Lupus, I was diagnosed by my symptoms, so a blood test isn't always right.
I hope you get answers soon

OP I'd ask for a rheumatologist referral or go private for an initial consult. They will test for everything that you're talking about here. One thing not mentioned so far, that is actually more common than people think, is Elhers Danlos Syndrome (type 3 or Hypermobility type). It's also a spectrum condition and you can show some symptoms more profoundly than others.

For women, changes in hormones can kick start a flare that causes the symptoms to become worse quite rapidly. You mention HRT, did the onset coincide with this? Or a change in dose, brand etc?

And as an aside, unexplained lower than normal iron/vit levels is quite common with people who have EDS.

Have you had your blood sugars checked? Ask for a HbA1c test to give a 3 month picture of where they are at.

I had CFS suggested years ago when I was suffering with debilitating fatigue in my early 30s. I really didn't think it was and after a suggestion from a gastro consultant I went gluten free which resolved everything for a good few years. Eventually in my 40s I was diagnosed with 2 autoimmune problems, either of which could have been causing the symptoms of fatigue etc. Going gf probably did help both of those.

Interesting, thanks everyone.

NaToth - I was just reading an old related thread you'd commented on, and you mentioned high cholesterol as a diagnostic for thyroid issues...my recent blood tests did show this, something Ive never had an issue with before. From a bit of googling things could suggest secondary hypothyroidism??