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 dont know for sure what was tested until I see the results. The younger gp has picked my query up ( thank God- the Male drs are the worse for being dismissive at my practice). She said the test for heart function was ok and the test for fluid on my lungs was ok. I have a appointment with her tomorrow to discuss further tests.

I'm good at advocating for other people but not do much for myself. There is no one to advocate for me. My husband told me my face had dropped on side in April but he told me to wait to see if it cleared up the next day. He though you needed all three signs for a stroke. I called 111 myself and was blue lighted to resus then. He didnt think much of it so pretty bloody useless if I do have heart failure

This has good info:

cks.nice.org.uk/topics/heart-failure-chronic/diagnosis/how-to-assess/

When you're seen Please ask for a referral to Cardiology. The very fact that you have hypertension should ring alarm bells, along with the stroke symptoms. It would also explain the ongoing symptoms of fatigue

Have you done a urine test? Oedema was the first proper sign (and being utterly utterly exhausted) that my kidneys were failing.

I did a dip urine at the gp with no comment. This is my home one

My ketones, liver and the third one down look weird but no comment from the gp. I'm not in ketosis. I was eating around 2000cals a day a glucose is 6.5

They do look weird. Did you ask the gp about them?

Honestly please get yourself to A&E. You might have to wait a while but it sounds like your GP isn't helping at all and your symptoms are just getting worse. They can do a proper work up and maybe start the ball rolling getting you referred to the right specialist.

No I didnt ask the gp as she did her own urine dip in the surgery and made no comment. The ones I posted are mine done at home. I have a pot because ì have used them in pregnancy.

Kidney failure here op and had a series of blood tests before they actually bothered to do a kidney function test. Never assume with doctors, some are fab but some are rubbish.

You mention high blood pressure - are you on meds for it? If you're on amlodipine ask GP to switch it to something else as it can cause oedema.
Ask for an albumin check - if low, increase your protein in diet. Low albumin can increase oedema.
Do you drink alcohol? Eliminate it completely if so.
Reduce calories - low carb/high protein - weight loss will improve your apnoea as well as reduce your pain.
What other meds are you on?

Are you peri- menopausal/menopausal?

Sounds like you need a good holistic GP to help you - don't let them fob you off.

Tests are tests - if you come out with alarming results and a diagnosis the NHS have to act on them

If that's the case then I think the NHS should reimburse the costs of any private tests people have done because their GPs have washed their hands of them. It's shocking how bad our health system has become, it's not fit for purpose in many cases, and needs a massive overhaul (not the US model though!)

I'd be straight to A and E. concerns about your kidneys

I think her kidney tests were all normal.

Ask to change your meds. My mum had 3 years of getting robbed off about her thickened legs with shiny red taught skin, they started ulcerating in the end. Eventually she saw a different gp who changed her BP meds and her legs improved immensely. I can't remember which meds she was taking then but she got put onto lisinopril and improved.

Maybe have a look at this website, on lymphoedema and lipoedema, and see if anything there makes sense. www.lymphoedema.org/

Your dip stick doesn’t look great to me. What did your dr say today?

Thanks everyone for the input. My gp was lovely. I'm assuming as she is young and still keen/ not so jaded as my normal gp.

She booked me in for a ecg, circulation doppler on legs and measuring for compression stockings. Whole new raft of bloods and referal to cronic fatigue clinic if each is normal. Lymphedema clinic if needed. Urine tests as albumin in my dip. If my leg doper is weird then she will refer me the vascular clinic to see if I'm furred up. Got to ask my neurologist if they will do nerve conduction study on my legs. Also look into inflammatory issues but my bloods for that was also ok.

So it's a process of elimination but looking at low level heart or kidney failure first.

It was so good as I think if we exhaust all of that I guess the cronic fatigue clinic could mop up any other possible causes.

It feels so weird just being believed and taken seriously. I did have a cry.

Oh OP thank God someone is finally listening to you! Hope they work out what is wrong very soon so they can help.

Glad to hear your latest gp was actually productive and that you are being taken seriously. Hope they get to the bottom of it asap.

I'm glad to hear your GP listened to you and will ensure you get answers and treatment
I'm sure you feel so relieved

Do you bruise easily ?

I think you need to ask the GP about the possibility of Cushing Disease

Thank you. I do feel relieved. I feel like it's the first time I have been taken seriously in years. The gp did say it might all of got worse since my nerve pain and I have felt less able to exercise but I did say I have had fatigue for years. Also it doesnt explain the odema.

Thoughts of kidney or heart failure are pretty scary but if it's that, it's better to know.

Really weirdly my thyroid numbers are getting lower and lower. How could that be? It was 5.5 once. Then looking back at last years it was 3.3 and now its 2.4? Mind you I dont have the print out for my thyroid. My iron was within range but from glancing at the computer it wasit in the bottom quarter of normal

No I dont think I do bruise easily, not that I notice anyway but I will look that up thank you.

I really hope you get some answers soon. As you say even if it's something serious at least you will be getting the treatment you need.