Help - at the end of my tether

[FutureMrsTomHardy]

I'm turning to Mumsnet because really, I think you're my last hope. I am a fairly regular poster & commenter but have made a new account because to be frank, I am quite embarrassed about being perceived as a hypochondriac.

I have been going to my GP since the birth of my first child (now aged 13) with a collection of still unresolved issues. I am going to list these here. Is it possible they're all linked? Is it possibly some overarching condition that nobody has joined the dots to? Or, am I just a pathetic hypochondriac! The tiredness and nausea is ruining my life.

1. Almost constant joint pain. I have sacroileitis, but nothing else other than general wear and tear damage. Mostly in my sacroileac, occasionally in my hips and knees.
2. Nausea when I wake up, until I've eaten. I can get quite disorientated and woozy at times, which is resolved when I eat and drink. I am not diabetic. Over December, I felt nauseous constantly, and lost approximately 12 lbs. This has lessened somewhat.
3. I can't stand upright for lengths of time. This was significantly more of a problem when I was pregnant, but still causes problems now. I end up getting dizzy to the point of almost passing out.
4. I am SO TIRED all the time. This time last year, blood tests showed that I might have autoimmune thyroiditis but every single repeat test has been normal. I wake up and I don't feel refreshed, I'm sluggish during the day then when I do get to sleep at night I wake up frequently.
5. Horrendous moodswings. When I'm on the pill, it's significantly improved but when I'm on a natural cycle I am a horrible person to be around for at least a week a month. I have a history of depression but don't feel that I'm depressed right now. Whenever I mention to the GP that I'm tired, the first thing they come back with is stress and depression.

Have you been tested for any food intolerances? They can wreak havoc on your body and cause all sorts of weird symptoms.

I have Coeliac and although your symptoms aren't the same as mine, mine were a collection of weirdnesses that didn't link up to any one thing. Thank God for a young doctor fresh out of med school, he picked up on one of them as a clear symptom of Coeliac.

I do have 2 (without nausea), 3, and 4 (just the tiredness, not sleep problems) off and on due to very low blood pressure & borderline anemia.

No, although I did try cutting lactose out of my diet a few months ago as I felt really gassy all the time. I don't think it's made much of a difference. My blood pressure has always been at the lower end of normal, I've never been anaemic but had low ferritin while I was pregnant.

No 3 - Has POTs been ruled out? Just a thought.

You mean you've been feeling ill for 13 years?! It doesn't sound like you have a very good GP.

The joint pains and tiredness (but sounds more like exhaustion) could this be Fybromalgia or mild CFS/ME. I know there aren't any tests for these conditions and it's a process of elimination. But has a GP ever suggested that this could be the cause. Disoriented and woozy - people suffering from CFS/ME often complain of having a "foggy brain"

Nausea - I have been suffering from this on and off since last summer when I changed my ADs - my GP is organising an MRI on my tummy. I am shocked that you lost as much as 12lbs in weight and your GP wasn't concerned. I would have thought he/she would have referred you for an endoscopy (putting a tube with a camera attached - passed down the throat and into the tummy, or an MRI scan.

Bloods - when did you last have a blood test, and was it a Full Blood Count. My GP is concerned about my bloods (I had a B9 vit deficiency and she prescribed Folic Acid) and there is a query about B12. She has referred me to the Haematology Dept at the hospital and I have an apt in early March. The thing about B12 vit deficiency is that the levels that are "normal" in the UK and lower than in other European countries and you can still have a deficiency even if the blood tests don't show a deficiency because you can have B12 vit in your system but it's inactive and so you will be deficient. I've no idea if this is the case for you, but I thought it worth a mention. That can make you tired and nauseas and feel unable to stand.

I have a psychiatric history and suffer from intermittent depression which can be severe at times but my GP never dismisses my physical illness as just being depression or anxiety. This is insulting in my view and I have read lately that patients with MH problems often get their physical illness overlooked.

I honestly think you need to be more assertive with your GP practice - I am 71 so don't expect to be in perfect health, but you are a relatively young woman and you shouldn't have to suffer so much - and for 13 years - dear god! I don't think you sound at all like a hypochondriac. Make a double appointment and ask to be referred on for the nausea and ask about the possibility of CFS/ME or FM. GPs are paid very well and you have a right for a better service - you help pay their salaries as they are public servants, so be assertive and make sure you get it across that you are struggling with many different symptoms. Is there a particularly good GP in the practice - I will only see one of them because she's so lovely and never rushes me and takes me seriously. Not saying the others aren't any good - I just choose to see her. Ask around and see if anyone can recommend someone - you might have to wait for an appointment but it sounds like you've been waiting for 13 years!

Really hope you can get a better service.

You ‘might’ have autoimmune thyroiditis? Certainly that would potentially give you all those symptoms (and more). If you have had a positive antibody test, the diagnosis is clear and the recommendation is that, in the presence of positive antibodies, treatment should follow.

Also, never believe anyone who tells you a test result is ‘normal’. For many doctors this simply means ‘within the reference range’ and that can be a very long way from optimal.

You are entitled to a copy of your test results. Under the Data Protection Act, your results are your data. It would be worth your getting a copy of all test results over say the past two years, and sticking them on one of the thyroid sites, like the ThyroidUK forum on www.healthunlocked.com.

I sympathise, and agree this needs to be properly investigated if it hasn't been done already. I have very similar symptoms (except the moods - but I get the red mist when hungry/ low blood sugar, which can hit me very suddenly) and eventually got a dx of CFS with associated POTS ( hence the comment above). But I accept that CFS really means 'something is wrong but we don't know exactly what' illness! I have however got a lot better since I took charge, got my GP to refer me to the endocrinologist (to rule out thyroid etc- he is also the CFS lead for our county) , and request blood tests to include B12 and D status, so I could get those optimal (they were only slightly according to referance levels) with the help of a nutritionalist. I seem to be better on a lower carb/ higher good fats way of eating.
The first thing to do is see your GP, possibly requesting specialist referral, if basic tests do not through up anything that requires investigation. My feeling is that medicine is at a fairly early stage of understanding many many illnesses, and especially the borderline illnesses that don't cause immediate threat to life!