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British Liver Trust
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Finally a diagnosis

It's a long boring story bu back in june I was told that I have cirrhosis. My gp requested an urgent appointment with a hepatologist but I was triaged as non urgent and put on the non urgent list. My gp asked the labs to test for AIH as I have previously had graves disease which is AI. As the initial test for ai had come back negative it was refused. My gp asked another three times but the b*****d consultant in charge of the labs refused every time. I finally saw a specialist 3 weeks ago who thought it was AIH and requested the appropriate tests. I have finally found out today that I definitely have AIH. I am so angry that because of one person's decisions I have been denied treatment for almost 6 months. Once I am on the necessary medication I will make a complaint against this consultant. I will have to read up on AIH and see what it involves. Deb

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Hi Deb, I'm really sorry to hear how you were treated by that consultant and thank goodness you at last saw a specialist who had your symptoms checked out in the proper way. So pleased that you will now be able to get the correct treatment for your condition.I feel your anger and I think it is very justified. I hope that your complaint when its made will stop the errant consultant making the same mistake with future patients. Power to your elbow!! Alf

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Thanks Alf, he is obviously a jobsworth and didn't think that I deserved to incur the cost of the blood test.

Deb

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In all walks of life you get a cross section of people. It is very unfortunate when you get a doctors or consultant who holds (lets face it) our lives in his or her hands and they are not listening. The greater majority are extremely good at their jobs but there are always those odd ones! My wife saw her GP some years ago with symptoms of extreme fatigue, difficulty in trying to lose weight, forever feeling cold and some hair loss. The GP told her that when you got over the age of 40 you had to expect this kind of thing. She came home and said "Oh well, this is what life is going to be like for me and I've got the menopause to come yet!". She put up with things for a while but was getting tireder and gaining more weight so she went back and saw a different doctor. This doc did blood tests and she went back for results. He said "You have an under active thyroid and I think that you have probably had this condition for a some time". It was also discovered over the following few weeks that she had Raynauds Syndrome and this condition is often found in people suffering from under active thyroid. within 3 days of starting thyroxine tablets she was a different person. Full of energy and excess weight dropping off. Unfortunately she couldn't take the tablets for Raynauds as she is very sensitive to medications and this one gave her bad head pain. At least she knows the cause now and she can prevent herself getting too cold thus avoiding the unpleasant symptoms like chilblains and white finger. Thankfully she went back and saw that other doctor or her life could have been very different!

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26 years ago I took my son to the gp for his asthma. I had been at this practice for 14 years so the gp knew me although I didn't see any particular doctor in the practice. As I spoke to her about my son she was looking at me. She said you've got an overactive thyroid. You've got a goitre and have lost weight and look thyrotoxic. She was right and I had surgery a few months later to remove the thyroid. This shows that a regular (mainly due to having young children) relationship between doctor and patient is important. When you are very thyrotoxic it can cause you to become psychotic so you don't realise how mad you've become and don't realise how extreme your symptoms are. When I saw the surgeon along with a room full of medical students he said if I'd been left much longer I would be psychotic permanently!

I know how your wife felt with an underactive thyroid, it's totally different than when it's overactive but it's really unpleasant. I couldn't stir a pan or hold the phone I was worried that I had MS or leukemia. Unfortunately after my thyroidectomy I became underactive and started thyroxine. A frw years later my thyroid regrew...who knew? I then had to go to the Christie hospital for radio iodine which destroyed all my thyroid so now underactive.

My daughter in law has reynauds and really suffers in the winter mainly with her fingers but also her toes are affected. Deb

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We have been at our surgery over 30 years now and at the time of my wife's diagnosis of 'in decline for being over 40 syndrome' we had been there 10 years. My wife is the sort of person who will try to put things right herself first before seeking help, so it's not as if she was on their doorstep every few weeks. This is a village practice too. She had seen this doctor many times with my son who had constant ear infections and croup up to the age of 7. The doctor had no excuse to judge and diagnose without running some blood tests! I feel that sometimes it's a lottery of who you see and then we are grateful when a doctor or specialist diagnoses correctly but it shouldn't be this way, surely it should be the norm! I understand it can be very difficult in some cases and it can take time to find the right diagnosis but as in your case recently and my wife's case the doctor/consultant was negligent! Re Raynauds, my wife concludes....always keep your feet warm and use gloves and hat in cooler/cold weather and you won't go far wrong. Up until we had 2 wood burners installed my wife used an electric foot muff when sitting for any length of time. All the best for your new treatment/meds. Alf

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Hi

That's just terrible. Yes, definitely make a complaint. Hope you get on the right treatment soon

One consultant told me mine was muscular, I was diagnosed with nafld nearly 2 years later and then had a biopsy a few months later when I was finally diagnosed with Nash!!! Please take care. Love and hugs Lynne xxxx

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Thanks Lynne. It just seems wrong in a relatively wealthy country we are left neglected. Deb

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Yes, I know what you mean. The NHS is brilliant , it's just spoilt by the minority. I know we are very luck to have it xxxx

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Hi Deb,

We are sorry to read how stressful getting your diagnosis has been.

We do have a publication on Autoimmune Hepatitis that may be of use, here is the link;

britishlivertrust.org.uk/wp...

Very best wishes

Trust1

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Hi Deb. There is a Facebook page that you can join, you have to request joining as it is a closed group. The group meets twice a year for meetings in London and Birmingham. These meetings are led by Consultants who specialise in AIH only. The group also has notes from previous meetings available on the page, so you can read up about the disease accurately. If you Google there are some inaccurate "facts" out there on pages that claim to specialise in AIH, so best to avoid these and read the group ones. Any questions please ask. All the very best on your journey ahead. :)

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I find it really strange that a health professional was not willing to request complete blood works. Auto-Immune Hep is checked as routine when liver disease is suspected.When I was diagnosed with the cirrhosis I was told that my problem was not due to AIH. I suppose the good news, if you can consider it good, is that the progression of liver disease is relatively slow and the delay in diagnosis should not significantly impact your treatment.

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It makes me so fired with anger when I read stories like this. I'm sorry this happened to you. Please make sure you hammer that consultant. They need to learn when they make grave mistakes as if they dont they will continue to mistreat patients in the future. Heart out to you Deb

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At least you are now diagnosed properly! I wish you the best! I would file a complaint too! Hopefully it will get better now.

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Glad to hear you finally have a diagnosis- well done for not giving up!

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Seems its like a lottery draw who the good GP and consultants are. I stopped going to the liver clinic because there was a snarky head nurse who kept sending distorted letters full of negativety. Not factual accounts or accurate notes of consultations mind, she just wrote all sorts of crap on my file and I eventually started cancelling the appointments with the liver clinic and sent in documented evidence of some of the inaccuracies. I would get a second opinion before relying on the word of your GP about your consultant, but then ofc my actual consultant is pretty good, just I think he has given up. I moved house and forced to move from a really good knowledgeable GP to an utter dysfunctional practice who know nothing about liver cirrhosis, they are totally incompetent and cba to monitor my conidtion (stage 3) so my opinion of GP's in general has fallen somewhat. If I don't do anything like ask my GP practice to do blood tests for my liver, they are just not interested in monitoring it. I have even had one GP telling ATOS that liver cirrhosis can be cured with regular exercise...

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We'd all be at the gym if that was the case. When I had the first liver scan earlier this year the sonographer said "you've got fatty liver but so do half of the population and I've seen much worse than yours" So you can imagine my shock when the completely tactless locum gp read out the report to me and casually said you have cirrhosis and an enlarged spleen with varices!!! Ay this point I said "did you just say cirrhosis?" I started to cry, she never looked at me and just told me to make an appointment for bloods in a fortnight and one to see her in a month. I left the surgery in a terrible state, luckily my daughter was outside in the car with my grandson who was asleep. I couldn't have driven home or got a bus but that so called doctor was quite happy to let me go home alone as far as she was concerned.

This same doctor had told me that I had blood cancer-myeloma and when I looked stunned she said "you look upset" no s**t Sherlock!!! She told me that I was going on the 2 week cancer pathway and I'd hear from the hospital in a day or two. When the appointment didn't arrive I rang to ask her to contact the hospital. She just said oh the next bloods came back negative so you don't have myeloma. It obviously hadn't occurred to her that I was worried sick and she could have told me that she'd been mistaken. I spoke to the practice manager who then told the head of the practice. They couldn't have been more apologetic. Needless to say I won't ever see that woman again.

Deb

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Hi Deb,

Good to hear you have a diagnosis and will begin treatment soon.

No matter what your healthcare system is we all have to deal with the good ones and the bad, and hope we see more of the good.

Best wishes to you and yours,

Mary

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Hi Deb, I can offer no real help but every time I read this I just want to send you a hug. So here is my virtual hug OXOX

Jaycee

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Oh Thankyou Jaycee. Received with thanks πŸ’“ I hope that everything is going well for you. Deb x

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In for another TACE tomorrow yuk xx

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Good luck πŸŒΈπŸ€

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I should have left you a link to the group:- facebook.com/groups/AIHorgU...

Hope you find it useful :)

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Its a good job you kept on and ensured you were eventually seen and properly diagnosed. You were mistreated and this consultant needs reporting, not everyone can can make their concerns heard as we can, makes you wonder how many of his other patients were fobbed off? I dug out my map for Salford , the car park is called the East car park and its on Stott Lane. on the left if you are going down Scott Lane. Cross over the road and walk to your right. Keep walking until you go past the Oxygen store and bike park on your right. Turn left and the door is about 15 yards ahead. Dermatology door is the 1st on your left. It will make your next visit so much easier hopefully x

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Thanks for that Radnor. I am seeing the hepatologist tomorrow. He asked his Secretary to sort out an urgent clinic appointment and hey presto it's sorted. I've got an appointment with my gp at 7.30, the hepatologist at 1.50 and a gastroscopy at 4pm. In one fell swoop I've drained the nhs 😊 I'll post tomorrow how all the appointments went.

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