Total Fatigue

[angse]

Hello everyone hope you all as well as can be, thought I would ask this question, as gp not helping me at all, I seem to have lost all the fight I used to have, I suffer from cirrohiss of liver, portal hypertension, suffered massive GI bleed in 2013 controlled with 6 monthly endoscopys, and propranolol, for last 3 months I have had breathing difficulties, had test gp said COPD stopped smoking 10 yrs ago, have had various pumps, nothing worked, it is so bad I could cry at the thought of going out, then I became very fatiqued, I can sleep most of the day and night, been going on 3 months, up and down to gp when I can get a lift, been back three times in last couple of weeks as my ankles swelled, then legs, both of which are very painful, stomach also started to swell, he gave me frusemide, I told him was feeling very I'll, he arranged for blood tests and found out my haemoglobin 5.3 which he said was very low, I have been on iron pills for 2 years, he said continue to take them, went back again as felt so I'll, he told me to ring ambulance when I got home, did that, they said could not take me to A\E as SATs were fine and because I have chronic liver disease they would not be able to help me, I rang my gastroenterolgist secretory could not get appt as fully booked, my appt to see my heptologist is not until 29th June, don't know what to do now, as barely can walk around, and keep going to bed due to this awful exhaustion, so sorry for this long tale, there is no one else for me to turn to, this is not self pity, I usually am very strong, but this fatigue has really brought me down, any feedback would be welcome. Annette

[pear-shaped]

Dear Annette,

This is awful! It makes it worse because all of the people involved in your care know that these symptoms are all part of your illness and are almost using it to their advantage to not help you which is so ironic!

You go into accident and emergency at your hepatology hospital - don't wait for the GP to send you or anyone else either get a cab their or call an ambulance. You must take all your notes and meds with you and insist that you are too sick for them to ignore you. Your hepatology team will have a liver doctor on call so you should get seen by one. Explain all your symptoms and if anyone questions why you haven't gone to your GP say that you had done in the past and your GP is not a liver specialist.

I do hope this helps...

Yours truly,

Pear

[angse in reply to pear-shaped]

Thank you pear, I will do that, as my heptologist is very good its the others not very sympathetic, including my heptologist, although he has not seen swelling, as ironically it started 3 days after my visit to him, I will just tell you how sympathetic he is, he said I am child Pugh A which he says is good, but people with cirrohiss more likely to die from heart attack or stroke, being I was quite depressed at that time, so happy days, thanks for advice it means a lot. Annette

[pear-shaped in reply to angse]

Dear Annette,

Because you are already under the care of your hospitals liver service there should be no issues with seeing you the only time they can question it is if you have turned up with a problem that is already undergoing treatment... Don't forget that there could be other things they would have to rule out... Like Mike says your GP needs to be taking responsibility as well so if you can write to the practice manager or get someone to help you to do it then that would also be helpful. There are places like the disability resource/support centre which can help you as well to get support with this... Try to contact your local one... You need to have someone advocate for you so that you are getting the best care possible...

Pear

[Hidden]

Not sure going to A&E would help here. Your biggest ally should be your GP so try one more time to explain the nature and extent of your symptoms. It might be a good idea to take someone with you. If you don't get what you need, change your GP. It is a simple process and new eyes on your difficulties may help. Mike

[angse in reply to Hidden]

Thanks Mike

That is worth thinking about, not to long though, I will see him tommorow, and see what he will do for me me, he said my case very complicated, I can't see how, cirrohiss caused by NAFLD with all these other conditions flying out of the woodwork due to the condition I have, thanks for advice, let you know outcome. Annette

[Hdon]

Hi Angie, excuse me asking but do you know what caused your cirrhosis? I only ask because it can be caused by GH - Genetic Haemochromatosis (an iron overload disease) and sufferers of GH get very fatigued. If this was the case. Iron supplements would be the worst thing you could take. Probably not the case as your haemoglobin is so low, but the body does funny things.

[angse in reply to Hdon]

Hi Hdon

Thanks for replying, cirrohiss caused by NAFLD I will pursue this with gp as he really is leaving me to get on with it, when I could possibly be treated, which would make my quality of life much more bearable. Thanks for replying. Annette

[carmik]

Sorry to hear you have now got the addition of copy.

Have you been tested for alpha1 antitrypsin deficiency?

This genetic disease causes liver disease and copd ,even if you don, t smoke.

Have you been given a reason for your cirrhosis. Unfortunately with liver disease if you confess to enjoying a drink they do not test for alpha but as my hubby was not a drinker he was immediately tested and found to be positive.

Keep us informed.

good luck

[angse in reply to carmik]

Hi carmik

Cirrohiss caused by NAFLD don't drink, funny you should say that about alpha 1 sent away for one, gp has to do it don't they? Thanks for advice. Annette will let everyone know. Annette

[Hidden]

Hi

I know we all understand how you feel!

For me it was finding a consultant who referred me the QE 2 in Birmingham that was the start of the path forward.

The local GP had diagnosed Swine Flue, you have the right to go to whatever hospital you want, the key and first task s to put around you Doctors, Consultants and Nurses that have the expert knowledge you need

Keep on trying and take someone with you to help you

David

[angse]

Thank you David

Advice much appreciated, and yes in future I will take someone with me. Annette

[AyrshireK]

Hi Annette, sorry to hear you are having a bad time.

Did your GP/has your GP palpated your tummy to check for fluid ?- swollen legs, swollen tummy as you know are possible signs of oedema and ascites. Fluid build up in the tummy can also press upwards into the chest cavity and cause breathing issues.

You can't just be palmed off like this since it needs checking out. Another month is too long to wait, you are under the liver unit arn't you? I would definitely be getting in touch with them for a more urgent check up. Our local gastro doc has always told us that if Stephen showed any symptoms we should get in touch with his secretary and they would always fit him in at a clinic.

Our GP is a bit the same - anything we've taken to him is just part of having chronic liver disease with nothing offered in way of relief - since we were going to liver unit as often as 6 weekly we never bothered taking much to GP just kept it with the Edinburgh team.

Wishing you all the very best, Katie xx

[angse in reply to AyrshireK]

Hi Katie

Thank you for replying, no gp did not palpatate stomach, your right have to do something now, can't wait for another month, will let you know Katie. Annette

[jacart]

If your haemoglobin was 5.3 no wonder you are fatigued. Did they recheck this after taking the iron? I would have thought that they would have assessed for a blood transfusion at that low. Get another doctors opinion or better still go in to A&E again as you feel so unwell. Mention that your last haemoglobin was low.

[angse in reply to jacart]

Hi Jacart no recheck as I have been on iron for 2 years, so am going to do something tommorow, as can't just wait here for something to happen, must say gp taking a chance, taking into consideration my history, will let you know when I know something, thanks for replying. Annette

[dooley1]

Dear Annette

This story makes my blood boil, an all too familiar indifference!! Low Haemoglobin (especially that low) should be a clue as to something going on here, has anyone checked for a bleed somewhere?Your Haemoglobin levels have no relevence to your iron(ferritin) levels your ferritin could be through the roof even with low Hb.

Platelets could be checked for clues to a bleed? Any bruising or blood in stools? you are going to feel terrible and fatigued with a Haemoglobin levels that low they need to find out why it's that low not just palm you off with iron tablets especially since you've been taking them for years anyway!! GPs are notoriously clueless when it comes to liver as its so complex but it his responsibility to get you seen by someone who knows and ASAP!!!!

Good luck, keep us posted.

Xx

[angse in reply to dooley1]

Thank you Dooley

That's what I was worried about a bleed, as last one in 2013 nearly killed me, I will get to see gp tommorow and am demanding he gets me an urgent app: to see my heptologist, he told me to do it myself, I didn't even get past his sectreary said not allowed to overbook and go to accident an emergency, who would not be able to do anything for me, according to paramedics which I understand, but could have checked for bleed, this is a hospital where I go for endoscopys in kent where I live, my heptologist is in London, after all that I was in shock and unlike me just gave up, but all you good people here have put the fight back in me, and I willmlet you all know. Annette !!

[francesco-P]

Annette,Sorry to hear news not so good for you,please stay strong,Wishing you strong again Love Francesco x,

[angse in reply to francesco-P]

Thank you Francesco for your kind concern, yes it is a nusience, but will get through it, and yes like you I will stay strong, hope you are well as you can be love Annette x

[scotty40]

Hi there, I feel for you having these symptoms of liver disease. When I was in hospital with similar symptoms my consultant told me that if you feel you are not getting anywhere with gp, go straight to the nearest liver ward and explain. Hopefully they will let you in or find a bed elsewhere. Hope you sort it out asap. No surrender!.

[angse in reply to scotty40]

Hi Scotty

Thanks for advice and that's a good idea, to go to a liver unit, and definatley no surrender, I will sit outside ward with the British flag if I have to lol as my grandson would say. Annette