Feeling tired, odema, put in a stone in a month, breathless. Gp insists I am fine.

[IncessantNameChanger]

I have felt exhausted for years. 7 at least. I have been going to the doctors about it for years and I always get brushed off. I told them three years ago I thought I had sleep apnea but that was ignored four times before I was referred to a online insomnia course. Luckily the insomnia team quickly realised that someone who sleeps 12 hours a day, fell asleep in soft play and almost at the wheel dosent have insomnia. I got referred via them and diagnosed with apnea. I have cpap.

It made me feel much better but I was never 100%. So I keep asking the gp every few months, get poo poo'ed etc on a endless loop.

This month I have put a stone on. I wake up with legs that feel like they will split open from swelling. I went to the gp again but as I had all the symptoms of heart failure I was seen. Breathless, exhausted, arms burn just hanging out washing. Odema everywhere. Had bloods and a chest xray. But all the results have come back clear so its case closed again.

My odema is so bad I have been wearing surgical stockings and only drinking a pint of water max a day.

My pee is still light in colour so I'm clearly not dehydrated on the third day. I never feel thirsty. In two days I have lost 4lbs presumably of water.

I just dont know what to do. I'm seeing a neurologist as I have weird nerve pain / numbness and have just failed a nerve conduction study ( I'm presuming as I am carrying a extra stone or two of water. So I might beg him to re refer me to someone. I would at this point go private but they told me years ago on this matter I need to see a consultant ( but what type of consultant? I dint know what's wrong).

I have a disabled child and I cant properly care for him like this. If I kneel down I feel like my legs are going to split down the middle.

How do I deal with my gp? On paper things look ok ( not sure on these last tests as not seem them. Thyroid is 5.5 ish. Same for cholesterol. Almost pre diabetes but not quite. Iron low but in ok range). So nothing abnormal but nothing failing any of the tests either.

If a private gp said my thyroid was too high how could I convince my gp anyway? I feel so hopeless.

This is my hand. Its been this swollen for many years now

From memory, my mum has issues with oedema but the GP didn't seem that concerned either.

Hopefully you get to the bottom of this and find out what is going on.

You've had everything tested and some multiple times - why are you pushing for there to be something abnormal when there isn't ? You're clearly making yourself anxious which in turn is making some (not all) things worse for yourself! You need to stop obsessing quite so much !

Because this is sudden onset oedema Mark's from loose primark leggings.

Is this really normal? The last time I had oedema like this I had pre eclampsia with a BP.of 170/120.

I feel amazingly well then. I still did when it reached 230/170. I felt great and most people couldnt handle that blood pressure. I'm never ill. I never catch anything and I didnt even realise I I covid. I'm very robust. Normally.

I feel unwell with it. Maybe its nothing but I'm in my 40s with young kids. Not sure to what extent I should just crack on swelling up with fluid with no reasons.

That's pretty much what my gp has said anyway. No reasons found so that's good enough.

Anyway, I'm going to get some herbal diuretics and try to intermittently fast until I see the neurologist. I have chest pains but only when laying down never on exertion. The ecg is Friday. I had the echo on Sunday, I'm assuming it couldn't have been terrible news as heard nothing so far.

@IncessantNameChanger

You've had everything tested and some multiple times - why are you pushing for there to be something abnormal when there isn't ? You're clearly making yourself anxious which in turn is making some (not all) things worse for yourself! You need to stop obsessing quite so much !

Because this is sudden onset oedema Mark's from loose primark leggings.

Is this really normal? The last time I had oedema like this I had pre eclampsia with a BP.of 170/120.

I feel amazingly well then. I still did when it reached 230/170. I felt great and most people couldnt handle that blood pressure. I'm never ill. I never catch anything and I didnt even realise I I covid. I'm very robust. Normally.

I feel unwell with it. Maybe its nothing but I'm in my 40s with young kids. Not sure to what extent I should just crack on swelling up with fluid with no reasons.

That's pretty much what my gp has said anyway. No reasons found so that's good enough.

What more do you want your doctors to do? They've tested you for everything and nothing has come back concerning so I'm unsure why you keep pushing. You've said you need to lose some weight so you have that plan, and you should probably stop obsessing over issues which aren't showing up in any tests, and getting wound up because someone on MNs Mums neighbours cousin had a swollen up leg which meant they had a heart attack.

You've had a lot of medical advice what do you want them to do?!

Where have you read they have tested me for every thing? Are you my gp?

Blood tests isnt every thing. I have had a MRI but its unrelated to my odema. It was for suspected spinal nerve issues. The swelling isnt any thing to do with neuro.

The gp said I could I have heart failure and did bloods and a leg doppler. That was it until I complained and got a echo and a ecg.

I want them to follow the nice guidance on heart failure. That's what I want without having to raise a formal complaint for it.

I get the gp is pissed I put a complaint in to get the ecg but I dont honestly put their feeling over a heart attack.

Unless you have seen my echo and can predict the outcome of my ecg on Friday. What will it say? What possible heart condition doesnt show up on bloods? Nothing of course. All heart issues can be seen on bloods. I know that, you know that but I like to piss NHS money up the wall. It passes the day. Either that or do housework I guess

Bit left field but have you been tested for coeliac disease?

I had no gut symptoms but oedema of my left leg, high blood pressure, tingling in my feet and hands, low B12, Vit D, iron and calcium led to tests that resulted in that diagnosis.

@IncessantNameChanger

Anyway, I'm going to get some herbal diuretics and try to intermittently fast until I see the neurologist. I have chest pains but only when laying down never on exertion. The ecg is Friday. I had the echo on Sunday, I'm assuming it couldn't have been terrible news as heard nothing so far.

Chest pains lying down could be silent reflux which is horrible and needs simple meds.

But you haven’t got heart failure. You’ve had loads of tests with normal results, so what would be the basis of a complaint?

You’ve had repeated bloods, x ray, Doppler, echo, ECG and MRI as far as I can work out. All excluding heart failure which would be apparent after those investigations.

I’m not minimising your distress or the fact you’re not 100% but I’m not sure making a complaint is the way to go.

You haven't mentioned an egfr test, do you have a result for that? Should be bundled in with your creatinine depending on how it's reported. Egfr, creatinine, potassium sodium and bun are all used in kidney function (or are controlled by kidneys). Which of these have you had?

@IncessantNameChanger

I get the gp is pissed I put a complaint in to get the ecg but I dont honestly put their feeling over a heart attack.

Unless you have seen my echo and can predict the outcome of my ecg on Friday. What will it say? What possible heart condition doesnt show up on bloods? Nothing of course. All heart issues can be seen on bloods. I know that, you know that but I like to piss NHS money up the wall. It passes the day. Either that or do housework I guess

You need to give it a rest you sound paranoid and ridiculous.

The harsh comments are unnecessary.

This OP is obviously worried about their health, there is no diagnosis, they haven't been investigated fully, & the GP has no management plan which takes into consideration differential diagnoses. Take your fingers off your keyboards, & the post button, & imagine for a few minutes how you would feel if this was your situation & your health had changed so much that it affected your ability to do everyday things, & there was no explanation for this, & then consider that you had to battle your GP to do the basic, relevant tests.

Hang on in there, you're having an ECG & cardiac echocardiogram soon. Take yourself to ED if your breathing deteriorates

You've had your echo, brilliant

are you eating normally? a healthy diet?
are you fasting?

Can you find time for exercise. Fluids will pool in your legs if you are not moving and walking. You need support with the DCs so you can do a bit of daily exercise. A personal trainer would be great, a trained one who can take into consideration your health issues and monitor things.

Hi OP,
I agree with a previous poster who suggested celiac disease. My mum had your symptoms. I would cut out gluten for a few days and see if that makes a difference. My mum would still be here if we had done that instead of consultants putting her on all kinds of meds. She suffered so much. Good luck

@Newhorizon21

The harsh comments are unnecessary.

This OP is obviously worried about their health, there is no diagnosis, they haven't been investigated fully, & the GP has no management plan which takes into consideration differential diagnoses. Take your fingers off your keyboards, & the post button, & imagine for a few minutes how you would feel if this was your situation & your health had changed so much that it affected your ability to do everyday things, & there was no explanation for this, & then consider that you had to battle your GP to do the basic, relevant tests.

Hang on in there, you're having an ECG & cardiac echocardiogram soon. Take yourself to ED if your breathing deteriorates

Im not the only one who thinks OP is taking it a bit far and unfortunately being an open forum you can't tell me what and when to post.

Some of OPs symptoms are real, some however seem that they can definitely be psychosomatic which is common when you're agitated about something. Which OP is. Convincing yourself you've had a heart attack is going to wind you up. Then, posting on a forum with everyone and their mate posting endless ideas of this illness, that illness (and they have no medical training either ) is going to make OPs anxiety worse. OP probably doesn't have any of these things as she HAS been tested for a lot - but people endlessly validating her is going to make her anxious and more convinced something serious is wrong.

It's NOT helpful any of this. OP if you're really concerned pay to see a private GP ans get them to refer you to whatever private consultant you believe will do the tests you want and maybe that will speed things up for you .

@Cassavaflower

Hi OP, I agree with a previous poster who suggested celiac disease. My mum had your symptoms. I would cut out gluten for a few days and see if that makes a difference. My mum would still be here if we had done that instead of consultants putting her on all kinds of meds. She suffered so much. Good luck

It would be better to ask the GP to check (bloods) for Coeliac Disease, it's a lot more complicated than going gluten free for a few days, & the advice is not to change your diet if being tested

@Sidge

But you haven’t got heart failure. You’ve had loads of tests with normal results, so what would be the basis of a complaint?

You’ve had repeated bloods, x ray, Doppler, echo, ECG and MRI as far as I can work out. All excluding heart failure which would be apparent after those investigations.

I’m not minimising your distress or the fact you’re not 100% but I’m not sure making a complaint is the way to go.

I only had the ecg booked and the echo after my complaint. I haven't had the ecg yet. Until I get the results I cant rule that out.

I complained, then was offered the ecg. I'm presuming my echo wasnt terrible as I haven't had the results and it's been a week. But it's still a worry until I'm told it's fine. That hasnt happened

Apologies I thought you’d had the ecg.

Mind you an echo is superior to an ecg regarding heart failure. And no news is usually good news! HF shows on bloods too, they would have likely done kidney function, BNP, lipids etc. If all normal then HF is very very unlikely.

@MrsLargeEmbodied

are you eating normally? a healthy diet? are you fasting?

No I'm currently eating a normal healthy diet. Dont get me wrong theres always room to improve. I'm going to start intermittent fasting to try to shift weight until my gp will see me again in case that helps. I have about six weeks at least until I see my neurologist. The gp still thinks neurology might throw something up but so far that's all clear apart from some bone degeneration in my neck

Reading up low vitamin D can cause fatigue, burning muscles and I think swelling. The dr said that was low but didnt recheck that. I'm taking high dose vitamin D from today hoping that might help.

Gp says my BP is normally 140/90 and that's optimal but surely that's a upper limit rather than optimal. I thought 120/80 was good.

Anyway my ecg is tomorrow so I'm very close to ruling out heart issues which is my main worry.

Your blood pressure is okay

There is some evidence that a suboptimal ferritin concentration

I'm pretty sure 140/90 is within the levels they would put you on medication for. And labetolol is okay, not amazing, but it is a beta blocker and it has the side effect of lowering your heart rate, in case that would cause any of your other symptoms. Diuretics are commonly prescribed for hypertension (often alongside other meds) so this seems an obvious first step and I'm quite surprised they aren't trying to get your BP down to normal - oedema is a sign it's too high (though of course it can also be a sign of other things).

Antihypertensives are indicated with consistently high blood pressure readings, & not a one off measurement.