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

Drinking only 1 pint a day will make your odema worse. More water, not less.

Yes, I read that drinking water is good for Odema, although it sounds strange.
Are you on any tablets for water retention?

I just cant face drinking. Honestly it so painful. The only thing that has helped to give me relief is not drinking. If I squeeze my leg relaxed it was rock hard. Now it's gone softer but the burning pain from where the skin was stretched is burning.

I cant get any treatment for it nor can I find out what's causing it.

That's the top of my hand. I took my rings off a month ago for a MRI for the nerve pain. The wrinkly skin is steroid damage from eczema in my childhood

No tablets for water retention because its deteriorated within a week and now I have normal results then that's the end of it. Even if my legs split open it seems to be a non issue if all my tests are clear. But something is causing it surely?

Odema can be related to your heart, is that all fine?

Is that your Thyroid TSH test result? It seems too high, especially when seen alongside your actual symptoms.

You really need to ask for a fuller thyroid panel to be done (TSH, T3, T4 and antibodies), as well as B12, D, folates and ferritin.

If the GP refuses, could you pay for private blood tests? That's a route a lot of people end up going down. I'm considering it myself as my new GP is not proving a good fit with her patients (being polite there).

Before you try paying for a private gp ask for a second opinion at your current gp surgery. Because clearly things arent right at all.

Second opinion

Thyroid of 5.5 is not ok, my gp would not medicate unless it was over 5 but when I finally saw a specialist he said it should be under 2.

For now, try lymph massage. Rub from your feet upwards quite firmly and briskly. Should help reduce some of the swelling. Raising your legs too will help. I'd also have a look at lymphodema online

I had a younger dr check.who serm more cautious when they start practicing check my heart. She referred me for a chest xray and said the bloods would check my heart. My older ex military gp says it's all come back fine. Not sure if he thinks I'm just some hypercondriact middle age but. Because that's how it makes me feel.

I have a long history of high blood pressure. The normal go says I need to change my meds, but the next dr says it's all fine. BP when I did finally see the gp for the first time I two years was 135/90 on the day. On the day it was concerning but again it's not stopped it all being closed down..

Has anyone checked your kidney and liver function?

What explanation were you given for the new oedema & shortness of breath?

Contact your practice manager, see a different GP, if there is one. Ask what diagnoses other than heart failure are being considered, are there other tests you should be having, is this something the GP can discuss with a hospital colleague - without referring you, do you need to be referred to the hospital acute medical unit (locally this may have a different name). In short, do not be fobbed off

If your concern is your heart, many private hospitals run a one stop service, so you see a cardiologist and they run all the tests in one session. It's not cheap, around £800, but if you can afford it it's worthwhile to get the help you need. The consultant can refer you back into the NHS too, you won't skip the waiting list but you won't have to wait for all the tests to get you on the list in the first place.

If you can't get anywhere with your GP, then please go to A&E. It's not the most appropriate service, but GP services are in such a mess that unfortunately A&E are having to help people that shouldn't need to be there.

Get yourself to A&E. Your symptoms can be related to heart problems and you'd need more than a blood test to get to the bottom of it. Can't believe your gp is being so dismissive.

@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

Jesus OP you poor thing. Can you contact a private practice and explain you have alarming edema that is escalating and causing pain and you are deeply concerned? They'll likely give you a full raft of tests and get to the bottom of it fast. I know it's expensive but just suggesting it as you said you'd considered it already. Tests are tests - if you come out with alarming results and a diagnosis the NHS have to act on them.

@Porcupineintherough

Before you try paying for a private gp ask for a second opinion at your current gp surgery. Because clearly things arent right at all.

I agree with this, pronto, then private immediately if you get nowhere with 2nd GP. Anyone can see from this thread this is something that needs immediate attention.

has someone listenend to your chest and checked your heart?

your breathlessness and oedema makes me think of heart issues. my grandpa had simikar symptoms to yours. he needed medication and a pace maker.

I'd agree with going to A&E while it's still Thursday morning, given you are also hypertensive as well as being hypothyroid and showing severe oedema and breathlessness.

Another vote to go to A&E. the GP should have ordered an ECG and possibly other tests for heart failure-have had this in the family. As the GP have let you down, A&E is probably fastest way to get seen by a specialist. I've had similar problem recently, GP refused to see DS who then had a ruptured appendix due to delay in treatment.

I think my liver and kidneys was tested. A full blood work. The younger doc listened to my heart and asked for blood tests for heart function ( not idea what ones). She didnt suggest what it could be but I know she was thinking the same as me with heart failure as I literally tick every box. The odema has just pulled on multiple pounds each week while I have been weighing myself. I normally am over weight but around 13 stone. I'm currently 16 stone.

I am going to ask again for the print out of my bloods. Just saying its normal isnt reassuring. I have a neurology consult next week. Maybe he is way in to get tests for the other symptoms? I need a emg on my nerves too.

It just feels hopeless

You think your liver and kidneys were tested or they were? You need to speak up for yourself or take an advocate to appointments, do you have native that can act in that capacity?

Ask them to check that your adrenal glands are working properly. I'd also get them to check your thyroid again. Very often thyroid blood tests will come back as normal, when they are not. If they won't do this, then go to Thyroid UK website. They have good advice.

This sounds and looks exactly like my friend who has stage three heart failure His abdomen is swollen with fluid too. As you are also breathless, I would present at A&E, even though GP insists everything is fine, it's not and is impacting your daily life