Are there any doctors on here, or does anybody recognise this?

[RemusLupinsBiggestGroupie]

If you are a doctor, how would you feel about a patient presenting you with a written list of symptoms? Previously, I don't think I've explained myself very well, and what the doctor has told me to do so far based on what I've said hasn't really helped.

Does this combination of symptoms sound familiar to anybody? I'm honestly at my wit's end now.

Get tired really easily, to the point when I can barely walk after being out for just ten minutes. Even a walk to the local shops exhausts me.

Chest feels tight, I'm short of breath and get palpitations.

My fingers and toes are really cold and tingly a lot of the time.

Standing up makes me very lightheaded and sometimes I fall straight back down again.

Going up stairs exhausts me and makes me very wobbly.

Sometimes even changing position, such as turning around from the kettle to the cooker in the kitchen, makes me really wobbly.

Often I have episodes of almost-fainting, where I don't actually pass out but have no control over my body. Can't walk as my legs turn to jelly; feel drunk; start leaning to one side; even fall asleep. This happens especially if I'm warm, or if I've been sitting down for a while, or standing up for a while, or eating.

This has been going on for months. If I'm resting and just sitting or lying about, I mostly feel okay. I'm used to being fit and healthy, and I feel like I've aged about 50 years in the last six months or so.

Sorry it's so long.

I've had the dizzy symptoms where I would fall over if I stood up too quick...it was an ear infection that was treated with the same drug as vertigo.

The tiredness and cold feet sound thyroid related. I'm not a doctor, but thought I'd share my thoughts. I hope you get diagnosed soon.

Have you been tested for anaemia?

Thank you. Ear thing and thyroid both been ruled out already.

I'd second anaemia, have had it myself recently and had a lot of those symptons.

I would revisit the GP surgery and see another GP within the practice. You should not put up with feeling so awful. If your GP practice is unwilling and or unhelpful then change GP practice.

The GP should arrange for you to have blood tests done (also to see if there are problems with your thyroid gland in terms of hypothyroidism).

Have you had blood tests? Until the last bit about getting wobbly and nearly fainting, it sounds exactly like my experience of anaemia.

What did they say about your thyroid results?. How is it that was ruled out?.

Having been through 12 months of doctors appointments with my mum, to finally get to the bottom of what's wrong I would give this advice:

Don't be fobbed off. If you have a gut feeling, or think a referral to a specialist would help, ask for one.

Tell the doctor that these symptoms are unusual for you.

Persist. Note taking, diarising, lists of questions, dreaded Google reaerch, will help.

In my non medical capacity, something I have learnt is that thyroid function tests in this country have a really wide range of acceptable, but some people are symptomatic in that range, so if you've had one of these previously, discuss the results with your gp. I think it's always worth getting a print out of any results too.

Also, I promise I'm not a stalker, but I think you are veggie? Sublingual high dose B12 is worth considering. Deficiency has a host of symptoms and is actually quite serious, but irrespective, I'd be tempted to try it, or ask the gp about it.

But I'm not a medic, so you're plan of going with a list sounds eminently sensible tbh!

Hope you get to the bottom of it and feel well again soon.

Have a look at PoTS, a lot of your symptoms sound similar.

I have this. Had it for years for me it's just a good dose of old fashioned exhaustion, for which they can do nothing. Do you sleep/ eat/ rest enough?

Anaemia could also be it. Or loads of things really, I had blood tests for everything to rule it out, i was about to write the list of tests I had but it's probably a bit scaremongery really do I won't

Thanks, all.

Anaemia is the only thing I've been told so far, but apparently my levels are now 'normal' yet I still feel hideous.

Yes to being veggie. GP said my B12 levels were fine/thyroid fine. I tried the under the tongue B12 for a few months anyway, but it didn't really make any difference.

Hmm. My first guess was going to be thyroid, sorry.
Do you ever take codeine? I know people that have similar reactions.
Do you have Raynaud's at all? (fingers and toes go painful and numb with cold)
Perhaps it's several things all together?
re the changing position (kettle)- if you look from side-to-side do you get 'wobbly' or giddy? Is it only if you're standing?
Are you taking any medication?

Could you be a carrier of Beta Thalassaemia trait? It's supposed to carry no symptoms but exh and ex mil both have the same symptoms as you describe and so do many others on the Internet

I slosh

Oops! Sorry! I also had all those symptoms and it was anaemia, particularly very low ferritin. However, they couldn't find a reason for the anaemia so there could be something else causing it?
What are your levels, do you know? At 9, my gp said my ferritin was "fine" - I moved just after that and my new gp has me on ferrous fumarate again to see if my levels go up

Thanks, all.

Can anaemia make you feel so horrible, for so long, even when taking iron?

POTs is sounding astonishingly familiar. Had never heard of Beta T but have two children and nothing has ever been said about it.

Anaemia can make you feel awful, really. My friend had anaemia, the dr was clutching at straws, and starting to test for leukaemia before they picked up what it was. Injections every month keep it under control.

Don't feel self-conscious about turning up to your drs with a list. I always do taht- wouldn't have a hope of remembering everything otherwise. My GP knows I'll have considered everything if I've taken time to write out a list.

How is your blood pressure Remus?

Wow, read the POTs link. I'd be asking my GP about that for sure.

Ask for a referral to the kind of specialist mentioned in the diagnosis page. Which I'd print out, along with the symptoms pge.

Let them rule it out.

Blood pressure generally a bit on the low page.

Would you really do that, Julia? Wouldn't the GP think I was being a tosser?

Low side, not page. Am tired/an idiot!

How old are you?
Is anxiety / low mood possible? - as a lot of the symptoms you describe are also physical manifestations of these.
May be worth asking about an ECG (heart trace) to rule out anything to do with your heart.

I honestly don't think it's anxiety/low mood. I have symptoms even when completely relaxed/happy.

Yep, I really would now. I wouldn't have at one time, but my experiences mean I definitely would.

If they think you're nuts, they can discuss with you why they don't think its that and explore other options.

Book a double appointment too.

(My sister has a rare condition that was a nightmare to diagnose, and my mum hit the eureka moment thanks to a TV programme and subsequent Google reaserch despite years of being fobbed off, or at least told that all the tests are normal and they couldn't find what was wrong.

My mum has a rare cancer that's been a nightmare to diagnose. Obviously there is much more to each of those stories, but the thing I will take away from them is that there is nothing wrong with having an idea and discussing it with your gp, even if it's far out. Let them tell you their thoughts on why NOT.

The other is that you do need to be forthright and persistent. I don't mean aggressive or nasty, just assertive and clear about what you think needs to happen next.

Thanks, Julia.