I was so poorly and Yellow that at times i would happily away with the Grim Reaper came knocking@The Head Homcho reckond all the time it was HepA, eventualy proved by result of liver biopsy. At worst ALT 6 500 normal40. Bilirubin v high but both tests on dow ward trend.
Problem was, I didnt fit the profile, so although Head Honcho was pretty sure, they had lots of conferences with specialists all over Yorkshire throw their twopenneth in andconcludi g Shes too old!!!!
Apparently in UK we get a natural.immunity as kids. Have hepA without even noticing and bingo! immune! How that missed me I do not know
Been to any exotic places recently? No
Sicily in June.
Anyway home now with instruction Just Ear,Easier said than done when you don't have much of an appetite
So ive gone for home made smoothies, cramming in as many calories into each one and drinking them throughout day and night!
No sign of PMR flare, frightened into submission?
Good news Docs v aware there about adrenal insufficiently, decreasing too.quickly etc.......
Educated some about low carb diet, some already aware
On a fashion note, a pink jumper is not a good look if you're jaundiced!!
Hope not too many typos, ive been part of Bob Nrwheats. Infinite number of monkeys theory.
Many thaks to all of you who sent messages of support in response to my Updates
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It’s great you have a resolution and an ‘easy’ answer. Sicily is plenty exotic enough to catch Hep A! Dodgy food handling and poor hand hygiene by a carrier is all that’s needed. It’s always on the basic travel vaccine list. Pink with jaundice, that’s more of a spring look. Russet?? How long do they reckon for the jaundice to clear? Long may the PMR shrink back in awe of a greater foe.
I think my trip to Sicily was too long before symptoms appeared, and phone call with GP when i said teast for covid negative, her response was.probably the 'flu, i treated as such. Worst thing, paracetamols with a wonky liver.
And interestingly the head honcho said someon of my size 5'2" and 9st could OD on recommended dose on packet in 4 days!!!
Yep pink not a great choice..but it got me in quickly! I must've looked horrendous.
Oh and sodium levels low. Not sure exactly.of numbers
My trip to Sicily 18 to 25 june. Symptoms began mid September so well outside 50 days. My theory is a supermarket trolley or dodgy prawns i ate late August early September 🤔
It could still have been caused by the Sicily trip if you went with someone else that you've spend time with since. A person with HepA isn't at their most contagious to others until 2-3 weeks after symptoms have started to present in them. That person could recover even in adulthood and believe they had something else like flu or COVID while they had HepA and were producing their own antibodies.
People with compromised immune symptoms or on medications which affect immunity can have a longer incubation period than the 50 days according to a small study. Some of the test group did not present as symptomatic for 60-80:days. Those people and chimps were also most contagious from 60-90 days after catching the virus. You may have thought other issues like flu or a cold or even just fatigue were bothering you but that was the early symptoms of the HepA.
Thousands of people have viral Hep A every year without even realising that is what they have. It's only if the body doesn't produce enough antibodies or the case becomes complicated that people get the more obvious symptoms of jaundice and liver complications.
Give yourself time , the average recovery of a severe case of HepA is three months but if you also have other health conditions that affect your immune system it can be six months to full recovery.
Glad you are out of hospital and hope you feel more yourself again soon. Take care , Bee
Thanks Bee I went to Sicily with my sister 18 to25th june.
She came for a meal with us Sunday 22nd September the day before things started to go downhill and GP said if its not Covid then its probably 'flu. Aweek later i was a very bright shade of yellow
Nobody who came for lunch showing any signs of HepA
Thing is your sister could have been contagious and positive but without symptoms from HepA in September, but could have tested negative by the time they were checked. You could have come into contact with it anywhere but taken a long time to show symptoms. It's unlikely that you will ever be sure how you contracted it.
It does make me wonder whether people whom could be more immunocompromised because of illness or medications should take extra precautions and get vaccines for things like HepA even if they aren't travelling to countries that generally recommend them.
We live in a very fluid global community these days and can't be guaranteed that we won't make contact in some degree of separation with someone whom may be carrying certain viruses because of the countries they came from or even because they travel a lot.
Air and Train travel and contact of things in International terminals isn't impossible.
They dont seem to test just jab. Public health wete on.it immediately. All invited for jabs. Not gettimg involved as to whether thy got them or not.her husband, alo at the meal, and a son. Do dont think.my sister is a carrier
That's the problem isn't it , you have no idea whom could be positive or negative.You'd have no idea if someone was a carrier after the holiday but then passed it to another relative whom became a carrier at a later point.
But to be honest , in today's society , you'd have no idea if you caught it from someone preparing food stuffs at a local cafe or supermarket or even from your corner shop. People travel , they carry stuff back , they don't necessarily get ill or ever realise they were carrying something .We all come into contact with people but have no idea what they've been in contact with before that. And no matter how clean people are sometimes stuff still gets passed on.
He had many sayings! 😉 One of my favourites is, when asked how he was "Mustn't grumble, as it doesn't help if we do"! (He lived to 91 - born 110 years ago this month! 💕)
Love the old sayings....we never fo rget them. Someone bought me a book of all the sayings, love it......it explains the origins of them, when I read them it takes me back to w ho used to say it......
What about Autoimmune Hepatitis? If you have an autoimmune condition you can get another? I do hope your getting better each day. Great to be home. Got to get the liver working again but it's easier said than done. What is healthy high calorie food? Smoothies are great but not too much fruit? Could be this has replaced the PMR. It's not fair is it? Little and often probably white food. I tried that for my Colitis. Didn't work either. Now trying to get off carbs again as its eased off recently. Complan is my suggestion. What sick people had to have convalescing. We had to feed Parkers Mum and Dad on it when they got alzheimers. Sorry not much help but I am thinking of you xx
Nice suggestion. In dont fit the symptoms. No pain, no swollen joints . Fidnt jave any pain at all, just felt lousy.Current smootie is oats banana, blueberries, raspberris, almond, walnuts milk
Sounds good . Did they suggest any foods that you shouldn't eat? How are your iron levels?
When I have a bad run with my pancreatitis I get powders from Naturya.
I add them to smoothies or porridge.
I usually get the Naturya Immunity pack and various flavours of Naturya Gut Feel or the Superblend. I add their Wheatgrass powder to juices when I need an added punch of certain vitamins.
They sell them in Holland and Barrett or from Naturya online. H and B have a 25% off online deal on most of them (unfortunately not the Immunity version at the moment because it's winter).
But if you fancy trying them just check the ingredients in case you do have any things you can't have with your liver issue.
Adding peanut or almond butter , yoghurt or things like Quark and ricotta and the protein rich yogurts to your smoothies or breakfast oats can also help you get more protein in the mix when you don't feel able to eat. That's another thing I need to do.
I sometimes add my sodium to smoothies to hide it as I have to have more sodium in my diet to control my POTs.
If you take magnesium supplements you are usually recommended to stop them for a while until your sodium is back to normal unless you increase your sodium intake enough to compensate for that or have the appropriate electrolyte tablets,
You can add more vegetables to fruit juice mixes as well.
I know what you mean. I have Pancreatic Enzyme Insufficiency from years of Autoimmune Pancreatitis so I have to be careful about what I eat and eat small portions and have enzyme therapy.I also have Functional B12 Deficiency and Folate Deficiency because of my digestion, And my Dysautonomia conditions mean I have to have more salt and water everyday,
Nutrition feels like a full time research exercise.
I eat five small portions meals or smoothies a day rather than three big ones.I often don't feel up to eating the small portions.
My first breakfast is usually a bowl of natural probiotic yoghurt with a teaspoon of honey and fruits, nuts or nut butter and a spoon of if homemade muesli or granola and I put some of the gut blend in it. Sometimes I can't cope with the eating so I blend it into a smoothie but make sure I have it all within the hour. I usually take my stronger medication after that so it helps protect my stomach.
My second breakfast I go with scrambled eggs or an omelette with smoked salmon or some ham and tomatoes and mushrooms. Sometimes I will have a think slice of wholewheat sourdough toast. I have my liposomal non acidic Vitamin C after and take my Folate, Vitamin D spray and Iron supplement then.
I'll often have a smoothie with a small banana in it at lunch with the Naturya Immunity in it and a tablespoon of high protein dairy like Quark or Farg. I add some nut butter or almonds and cashews.
I usually try to have a salad of some description then or a bowl of homemade soup. I have chicken , fish or falafels with my salads. Sometimes I will still have an egg for extra protein, and good cholesterols.
I have a small portion of the meals we make in the evening. I often need to eat more red meat or offal than other people so I'll have a lean steak or venison a couple of times a week but mainly eat white meat or fish . I have a small portion of skin on potatoes or wholewheat pasta or a wrap, pulses, couscous or buckeheat or brown rice lots of vegetables. We have a lot of stews because they are easier for me to eat . We quite often use Quark blitzed with berries or a little dark choc as a sort of cheesecake like pudding and put it on oat biscuits, or we have jellies and creme fraiche.
I often have a milky drink with added oats and almonds and a little honey a few hours before bed to help relax. Sometimes I will have an oat biscuit or two like those from Nairns.
I just thought I'd add this for an example in case it helps you get a few ideas about eating with a low appetite.
It sure does! Thank you. Ive been eating every couple of hours and takes smoothie in a thermos to drink when i wake in the nightLast night was banana avocado with a vanilla protein drink
The nutrients in the skin of sharp green apples , like granny smith can also help liver function.I've been having them in smoothies or salads for years , especially when I feel the potential of a bout of pancreatitis coming on, or while I'm recovering from them.
I use turmeric and garlic in foods , but can't take them as high dose supplements anymore because of my cardiac issues. But I found they helped improve my digestion for years before taking cardiac medication. I can still tolerate ginger and often have a cup of Three Ginger Pukka tea before a meal to help reduce the reflux and help my appetite. It just seems to decrease that sort of sicky , bloated feeling that can put you off eating.
Sicily might be part of Italy and not considered exotic by the uninitiated - but there are an awful lot of people in Sicily who have arrived from exotic places bringing their bugs with them.
However - what nationality was Head Honcho? Natural immunity is seen in people born and raised to the age of 20 in countries where Hep A is endemic . I really wouldn' t describe the UK as one of those! I think your Head Honcho needs some bedtime reading - and frankly, I would write to someone because he is seriously misinformed if he said "in UK we get a natural.immunity as kids." and he needs some education. I realise the UK is slipping badly but not yet THAT badly.
It is going to be difficult to identify where you got it - most likely eating out or shopping somewhere where an employee is carrying it and not adhering to proper hygiene practices.
However - you NOW have lifetime immunity! Won't happen again.
Get proper well soon - how much weight did you lose?
That COULD be non-syncronised scales. Should have weighed yourself when you got home for a better comparison. But that isn't good if you are still losing weight. I would love to be that - but I'll pass on the way you got there!
Well no - but it was always said to be a good thing to have a bit of upholstery in store as you got older in case you were ill! OH didn't have an ounce of spare to fall back on. Me now - about 10kg ballast ...
They were contacted by public health....i was too far gone to worry abot that. I did tell my sister that i wouldnt wish this on anyone, better to be safe than sorry. They were all invited for jabsOH had his first jab about 10days ago. There was no mention of testing
And yes, it was very noticeable, in Sicily , the mix of races hanging around doing not v much. Giuseppe our guide said they hang around like this for a whileand then move on to mainland Europe
We were, apparently, exposed to one of the Heps many years ago on a visit to relatives in UK. They contacted us and told us we needed to all go to our doctor asap and get vaccinated, which we did, no questions asked! (One of my cousins was a mechanic at the time, and somehow caught it through his work.)
Probably they want to immunise exposed people before they are likely to test positive!
As it was whole family, it would have been before 1992. Youngest child was 2, so 1986. (After that I got smart and took one child at a time every few years!)
Newborns with jaundice look so much more yellow in pink babygrows , must be some sort of color theory interaction. Go easy, takes a while to recover from Hep A.
Thank you Yes i was warned it could take months and the best way is to Just Eat which is so difficult when you dont fancy food! Im making lots of high calorie smoothies, i can manage them. Little and often
My ex had that in 1969 when we were living in Sao Paulo with 2 little children. Very ill...best rest for 3 months living on crackers and honey, then a fat free diet. Lost lots of weight. 6 months off work, no alcohol for a year. Think things are different now. Was back to normal when we returned to the UK. He's now a fit and healthy 85 year old! Onward and upward. Get better soon.
Glad to hear you are out of hospital! My son had jaundice when he was born. Twas in the days when you didn't know what gender you were getting. I had a whole knitted wardrobe of yellow clothes! He looked like a minion in his little crib under the lights! Do hope you feel better soon. Love all the sayings! xxx
There was a lot to be said for romper suits!! My older daughter, 8 weeks prem, developed jaundice (of course) and was under the lights. She came home with a lovely suntan and always turned very dark brown every summer.
If she is in the sun and forgets sun cream, yes, But not like she did as a child. We lived on a campsite for 2 months when we moved to Germany and the first night in the flat with a proper bath OH complained I hadn't washed her ankles properly. They were black!!!! She looked very Italian she was so dark.
So glad you’re home and on the mend . Smoothies with added raw ginger can help with nausea . Banana, kiwi , apples, pears in Alpro Vanilla yogurt is palatable. I could eat it til the cows come home, but aware of sugar content, you can add powdered protein for weight gain.
I take milk thistle, not sure if it will help you MB , currently taking many meds and don’t want to over burden my liver .
Onwards to better health and a great recovery. Glad you counselled them on Pred tapering.
My dear grandad was infected with Hepatitis from the infected blood scandal.
A different Hepatitis, currently trying to get justice for him but all health records, doctors at the time, family witnesses have gone apart from my brother and myself.
A white nightie and dressing gown will look lovely as you start to look tanned. xxx
Good Luck , my friend went through a lot of trouble getting her late husbands records in full. and she was retraumatised after reading them and giving evidence for the inquiry.Her husband had haemophilia and contracted Hep and HIV from contaminated blood. With the culture at the time she not only lost her husband a few years after that but she was left dealing with the prejudice towards them both while he was alive but also the decades of stigma and penalisation from being the partner of a person with HIV for decades after when trying to get loans , mortgages etc.
Luckily, she has begun to receive compensation but it's little relief after all that she went through and how having to deal with going through the details of her case has made her PTSD and grief come back to the surface after she'd worked so hard to get mentally healthy.
Yes, I mean she had remarried and had two children and had obviously tried to put her grief behind her and not think about those dark times , but those scars are easily broken when they force people to revisit the events.It's something they never seem to take into consideration with these inquiries. It's like they have basically made them live through the same trauma twice. In reality they should be criticised fir that and a new system of investigating claims needs to be established were the investigators are given the names and dates and they gave to go through the process of searching for all the information and reading it.
It causes so much stress just trying to track down the information and lots of time and some money to get it sent to you even before you fill in the claim forms.
Basically, it was there mistakes that cause the need to claim so I think they should have to face up and take on the financial load to do the research not just to pay the compensation.
I've read through my records to try and get proper treatment and some of the gaffs and things said about me incorrectly in them because they lacked the knowledge and experience to see that I was a complex case and needed less common tests were appalling . That made me feel very upset as it is and I didn't have to read things as bad as she did.
The amount of times I was accused of having physical symptoms from Anxiety or was accused between doctors of probably having malnutrition and severely low BMI because I had an eating disorder that I was not admitting to , but that nobody told me was being said and influenced their decisions was horrendous.
I probably wouldn't have the additional and more severe neurological and cardiac symptoms associated with my illnesses now if they actually accepted what they saw in my nutritional and blood count tests as signs of an underlying functional digestive problem.
I took 15 years from my first abnormal blood tests to my diagnosis with a lot of pain and surgical procedures in between that could have been prevented.
I had untreated recurring functional B12 and Folate Deficiency for at least 15 years, probably closer to half of my life if the symptoms are anything to go by.
I could decide to sue but to be honest I don't have the physical energy to put myself through the stress and I don't want to have dealing with a complaint that will be hard to establish to cause me additional health issues or Mental Stress. But it does make my blood boil when I am reminded of it and I have no trust in medical services and still get similar comments and treatment but luckily have the skills and knowledge now to put them in their place and force them to do the right checks.
How dreadful, I’m so sorry for your friend. Poor dear lady , her poor husband too .
Money doesn’t come anywhere close to putting things right .
We wanted acknowledgment and justice, they want witness statements. There’s only my brother and myself now, he can only respond with thumbs up or down, poor boy has a degenerative neurological disease. We all suffered when we lost our grandad .
With trying to fight for my mum and my grandad it’s very upsetting, my mum had started the process years ago but completely shut down by the hospital.
My grandad also had Aids and Hepatitis after 8 pints of contaminated blood for a perforated stomach ulcer . What saved his life also took his life . I would cringe when my uncle told people his father had died from AIDS . Mum only told them about Hepatitis.
It’s dreadful neither the hospital nor his GP practice exists any longer, all records were destroyed after 8 years.
Back then we thought it was the chance you took when receiving blood . After I had my twins I refused a pint of blood . I’m glad I did .
Reading through my mum’s hospital records this weekend has been extremely traumatising. My daughter had put them out of sight for a while but I decided to face it .
I was left shocked , sad and angry , grief stricken, it never went , but again I want justice . I understand the PTSD your friend is experiencing. She’s been through hell and back .
Please send love from a stranger to your friend. xx
I will and thank you.I completely understand why you cringed.
My friend had been treated with such prejudice when it first happened in the early nineties that when she had children she began to lie and say her husband died of cancer because she was so terrified of people treating her children badly and leaving them out of things.
She didn't tell me the truth until ten years after we'd known each other when she first started looking into making a claim.
I obviously had no prejudice about it and said how sad and angry I was that she'd been made to feel like she had to lie about it to people.
She broke down in tears as she had been so scared and it was a relief to hear that. Thankfully it gave her the confidence to be more able to tell people the truth as the years have gone by.
She is a member of a Facebook group for widows and families of victims. I think it's the group which includes lots of the first campaigners to get more help. I know that the group are really good support to each other but they also give people help in finding other ways to find lost documents as well as help to manage the claims themselves. Are you a member?
If not , it might be worth joining to get that support both practical and mental.
What disgusts me is that they knew the chance that those blood products could be contaminated for some time, the US had already stopped using them , yet our health service still chose to use them because they'd already contracted for supplies and they were cheaper.
Good luck with it all , if you ever need a chat feel free to send me a private message , I'm here for you if you need me , even if it's just to have a rant, hugs , Bee x
It is absolutely heartbreaking for your poor friend, most of her adult life has been blighted by this unnecessary evil event . It seems now , it was all based on putting saving money before human lives yet again.
What she has had to live through and endure to protect her children and herself against the awful stigma , nothing can ever put that right.
I’m thankful she has such a wonderful friend like you Bee . It’s unbearable to even comprehend what she’s been through.
We’ve had many scandals come to light recently.
I’m not a member of any groups but will certainly have a look. I do need as much advice as possible, it’s a case of only having my brothers and my own witness statements now and as said earlier my dear little brother can’t speak any longer.
We both of us remember it all like it was yesterday, it’s so frustrating.
Thank you so much for your kindness, you truly are lovely.
Thinking of your friend and her children, her husband too , hoping she has some good life ahead of her , my goodness she certainly deserves it.
They were all lovely from cleners and cateri.ng. through the mulifarious grades of nurses to.the medical staff. Even the consultants bar1 had really good interpersonal skills, and treated the whole patient. And took the time to explain what was going on.Food eas crap mind, apart from the puddings. Real scool dinner puds, crumbles, pies, steamed.sponges....and lashings of custard.
Sadly i couldnt manage any of them, no appetite, until last 3.or 4 days
They did a documentary about HRA, one of those Fly on the wall things. I didn't watch much of it but it must have boosted staff morale to be recognised
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Back up to 15 and no better!
Update on stroke and painful back 
Update on surgery and remission - still doing good - enrolling in a clinical trial, I hope
decrease in Pred after hospital admission 
4 months since diagnosis 
