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

I'm so sorry. I would go back to the nicer GP and ask her, what would she do if she were you?)

I have already had a quote from a private hospital to see a cardiologist but I'm loath to go as its £200 just for a consultation. It might not be my heart so it feels a bit pointless booking in a private consultant if it's the wrong specialist. If its autoimmune then seeing cardio is pointless.

The oedema is one symptom I cant put down to worry. my ankles swelled up so my much that there was no change on me tensing or relaxing my leg. It was rock hard and I have very defined calf muscles

You health problems seem similar to my late father
He had terrible Odema to the point he could barely stand up along with COPD much of it all related to bad management of his diabetes and a kidney problem I think his kidneys were working at 70 percent or something I can’t remember and he had a heart related problem
But it was his diabetes that caused him the most problems with his health

Cushing’s?

Keep going back to GP and push for all possible referrals.

Not a great angle but you can clearly see my calf muscle today. On a bad day my entire lower leg is as solid as my tensed muscle and it's just a rock hard mass up to my knee. both both legs.

I might be completely talking out of my arse but if you have the money for a private consultation, would it make sense to see a private GP, and get the appropriate referral(s) that way? Does anyone more knowledgeable about the system know if that could work?

Did they do the b12 and foliate blood tests as these aren't tested as standard and need to be requested?

I think they did test folate and b12 as I had 3 blood draws over three weeks. All was fine except creatine and calcium but redraw supposedly fine.

I have started to set up the NHS app so I can view them all on my phone. Cushings does sound plausible but so do a lot of things.

Could you get a referral to a rheumatologist?
Scleroderma can go with other auto immune diseses such as Lupus so you could have more than one condition causing the problems.

OP I have many of the symptoms you suggest and I have a growth on my adrenal gland that is thankfully benign, I am being tested for cushings and all sorts under the endocriology unit,It has taken 10 months for the tests to kick off due to covid and I am awaiting results,My heart they thought was the original problem but thats fine,The odema is horrendous and the pain I feel under the skin is worse,I am severly breathles too.My growth was found by accident when I was admitted to hospital last winter with pnuemonia and plurasy,I thought alot of my symptoms were down to menopause but it wasnt and I was getting worse,They think my growth on the adrenal gland is causing my hormone levels to go bananas, Keep fighting for answers,be a nuisance,ring PALS and ask them to explain things to you,they are wonderful people.You deserve to be as well as you can be and you need to keep fighting, I wish you well,My results are back in 3 to 6 weeks but its too late for me I have been off work so long on sick leave it runs out soon and I am sure my job will get rid of me as they are fed up,Its an awful place to be,strugling to get tests and results,going on to half pay and not being the wife or mum I should be so you have my every sympathy.

I dont think I'm going to get a referal to anywhere for these symptoms via my gp.

I got a refferal to neurology ok via a female partne but that was some clearly worrying neuro issues. This isnt so clear cut so I was hoping if I got reffered to the fatigue clinic they could look closer at my blood and maybe re refer me.

At the moment it could be

My heart
My kidneys
Autoimmune
Hormones

Therefore sit and wait. Come back in six months but repeat that for seven years

I would in your case bypass the GPs and present at A and E. I dont and wouldnt advise this as a usual method but in your case you have been so badly let down it can't hurt.You have nothing to loose,

@Iputthetrampintrampoline

I would in your case bypass the GPs and present at A and E. I dont and wouldnt advise this as a usual method but in your case you have been so badly let down it can't hurt.You have nothing to loose,

But doing this wouldn't get OP a referral to anyone. They would do investigations that needed doing urgently, but OP seems to have had many, and simply then discharge her back to her GP and the GP would then have to do referrals to specialists. So OP would just end up in the exact same place with just a really long wait in a&e to add to it.

I think if my legs swell up badly again and I'm.struggling to breath a&e would be a option.

I wonder if I had a mini heart attack then hence the muscle damage blood results but then I wonder if I'm wondering into paranoid area.

My gp was asking if I had muscle wasting in my family history. Then it's fine so not explanation for the sudden spike at the time the oedema was at it's worse.

Sometimes I get chest pains on my left side right neat to my breast but then I wonder if its muscular. No real signs of heart attack though. Just small niggling stabby pains occasionally

@IncessantNameChanger

I think if my legs swell up badly again and I'm.struggling to breath a&e would be a option.

I wonder if I had a mini heart attack then hence the muscle damage blood results but then I wonder if I'm wondering into paranoid area.

My gp was asking if I had muscle wasting in my family history. Then it's fine so not explanation for the sudden spike at the time the oedema was at it's worse.

Sometimes I get chest pains on my left side right neat to my breast but then I wonder if its muscular. No real signs of heart attack though. Just small niggling stabby pains occasionally

Swelling is a definite symptom yes, but a lot of other things you describe especially in your most recent post sound like anxiety based symptoms as well.

I dont think I feel generally anxious. I have four kids two of whom are in SEN schools. I was on steraline for a while but stopped that in April as dont think I needed it anymore.

I do feel slightly depressed and stressed out but I think that would improve if I wasn't so exhausted.

Breathlessness is on exertion like going up the stairs. Walking on the school run. I feel breathless immediately as soon as I walk but weirdly if I walk for say ten minutes i feel better after that. But the first ten minutes I'm mouth breathing and my muscles burn. Then i warm up and i can chug along.

But my arms burn holding up my iPad to read at night and hanging out washing. So it's not just lack of condition. It's a real burning pain on slight exhursion. The arm burning was new since this year.

Can you change GP surgery? Complain to the practice manager?

The arm thing can be if you're low in iron. Mine used to be knackered hanging washing up, like fatigued

@IncessantNameChanger, you must be worn out with it all. The frustration of being unwell, dismissed & not having a potential diagnosis or even a plan!

I take it your BNP & ferritin concentration have been tested & are within normal range? Why can't the practice take an ECG? Have you contacted the practice manager, call & ask to speak to them. At this stage, definitely present to ED/urgent care if you're short of breath. Avoid joining a gym for now.

I have put a complaint in to the gp manager and they said it will take some time. That's when they offered me the ecg this Friday.

I have set up the NHS app to view my bloods. When the gps check the bloods they only look for the labs alerts when things are out of range. They didnt pick up before that my iron was low, but a dermatologist did when my hair started falling out.

I cant really change surgery as I'm rural so the next nearest is in a busy market town.

I have a named gp but try to avoid him. He is a great Dr I'm sure but I just find him a bit off and dismissive with anything I say either me or my kids. I dont really take the kids anymore.

My face and eyes seems more swollen recently too. I'm going to contact the gp again today as thsts new

I am.a great advocate for my kids with SEN
But it seems I am a shit advocate for myself. People see me as strong and capable so theres not much offers of help. Telling my sister I was having a heart ultrasound didnt even invoke a "why?"

The outcome so far is that my swelling is idiopathic ( no cause ) but I'm on steroids so go back if it doesn't improve.

The only worrying thing in my bloods was low vitamin d, high pre diabetes reading ( this wasnt mentioned by the gp)

My kidneys and liver was tested. Liver seems fine. My kidneys seem fine but I'm not sure which tests was for the kidneys.

I have to wait for my neurology investigations to conclude which will be January at the very soonest.

I'm seriously considering trying to loose as much weight as I possibly can as I think if everything has no reason then it's all I have left to try?

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 !

Please push for an echo cardiographer. My mum has dilated cardiomyopathy.

Before she was diagnosed, she was getting heart pain and swelling in her legs and arms. We tried to get gp to listen and they were unhelpful. We head to take her her a and e a few times before they realised that yes something is wrong.

I strong suspect you have a heart issue, maybe cardiomyopathy. Please insist on echocardioram, not to be confused confused electrocardiogram.

Can I second/third the need for an emergency echocardiogram? Or a cardiac ultrasound?
My husband had all of these symptoms and has amyloidosis. This has caused heart disease.
It’s urgent that someone looks at your heart function. I know you know this already but this disease is often missed by gps as it is rare.
I know it’s £200 that could be spent elsewhere but if this were for your kids you’d do it I’m sure. And your kids need you… so it’s for them too. Most private practices can allow you to pay off in instalments too.
Good luck OP.