Lupus and the Liver: I am having a terrible time... - LUPUS UK

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Lupus and the Liver

Natura profile image
40 Replies

I am having a terrible time with my liver. I have been on an anti inflammatory diet for 4 months, and apparently my liver cannot handle the high fat in some of the food. Coconut milk, oil, avocados. Unfortunately, it has healed my hump on my upper back which I thought was due to high cortisol levels.

Grateful for that, but I am still dizzy (coconut oil fixes my dizziness) and my liver has now become very fatty, and hurts. My mother died from colitis and liver failure at 48. The doctors had her on iron pills. Possibly because she showed up anemic due to lupus. I believe lupus was unheard of in the 70's.

How is the liver affected by lupus? This is confusing to me. Did I get these fatty cysts from the high fat in my diet? Or is my liver holding too much iron, and just not working properly. There is iron in all the vegetables I am eating now. What should my iron mg limit be on a daily basis?

I am so confused and upset about all of this. Trying so hard for 3 years to find a solution. A lot of my problems dissipated except for the kidney problems, my liver and my dizziness and breathing difficulties. Is the fatty liver messing up my breathing and my diaphragm. I am trying not to cry....

I guess I need to find a rheumatologist to discuss all this. I have not found a good one, and I have no health insurance at the moment. (I am looking into).

Any information would be greatly appreciated.

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Natura
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Silvergilt profile image
Silvergilt

I'm sorry you're feeling unwell. Please try not to panic yet; just because your mum died of colitis does not mean you will. You've made food choices which are yours to make, but as I have said before, food is not medicine. It can help but illness is illness. The food probably hasn't done this to you; lupus has. That's all. its not your fault and you did your best.

No insurance is hard, especially how things are going over there at the minute with healthcare (you're in the US correct?) please try to get that sorted out ASAP. Medicare/Medicaid isn't great but it may be available to you.

You said you saw a doctor about the cysts but they dismissed the concern? Are they aware of the pain and your lupus? Can you get another opinion?

Take things one step at a time, don't what-if yourself into the ground. You've got this.

I wish you strength

in reply to Silvergilt

I agree with Silvergilt - but also wonder about the wisdom of following any specific diet if you are prone to liver and kidney problems?

I decided a few years ago that diets were wrong for me and that eating a very wholesome, well balanced diet was key. I am apple shaped and lack energy so being realistic, my liver will pay a price for anything in excess - including plant fats.

So I avoid alcohol, refined sugars and other forms of sugar including too much fruit. I avoid pain relief meds which I believe are hard on the liver. This means that when I do take a couple of paracetamol they are generally very effective. I avoid excessive amounts of gluten and dairy and eat only the odd piece of homemade bread made by me with good ingredients. And I avoid dairy foods and drink almond milk with my wholemeal porridge or cereal. Milk makes me feel nauseous and even more constipated.

Most of all I think the reason to avoid specific diets is because it makes me obsessive and uses up mental energy that I need for other things. Focussing too much on feeding myself gives me cravings and denying myself certain food groups makes me obsess with them. Better to eat a little of everything but make sure it's of the best quality possible. This way I eat less and focus more on living.

The AI diet triggered a gallstone flare about seven years ago. Now I have had my gallbladder removed so have to be extra careful not to over indulge in liverish foods or I find that I get severe gastritis.

I believe the liver can self repair very well. So you have only been following this diet for a few months and I doubt you will have done any permanent damage. But maybe it's time to get some health insurance if you possibly can? Try not to panic. I do all the time just now but it really doesn't help either of us. Repeat after me "everything will be okay" over and over taking deep breaths and I do honestly think it will. X

Silvergilt profile image
Silvergilt in reply to

>>Most of all I think the reason to avoid specific diets is because it makes me obsessive and uses up mental energy that I need for other things. Focussing too much on feeding myself gives me cravings and denying myself certain food groups makes me obsess with them. Better to eat a little of everything but make sure it's of the best quality possible. This way I eat less and focus more on living.<<

I'd quote this and add some big highlighter pen along with it, because this to me is important. Obsessing over diet can be destructive indeed. I had very disordered eating for years due to constantly trying to lose weight, and it's done longstanding damage. Worried about every bite of food I put into my mouth, worried about whether it was the RIGHT way to be eating, constantly hungry, etc etc, Actually the Fat Nutritionist puts it best: fatnutritionist.com/index.p... The Dutchman was dieting last year and, while he did lose the weight, he talked about food ALL The TIME. And of course it all came back on, and then some. I hope a more balanced approach this year will be in the offing.

Natura profile image
Natura in reply to

Thank you Twitchy...working on medicare today....I am dairy and gluten free. I also dont take ibuprofen anymore because it bothered my kidneys. I limit sugar (maybe not over the holidays. Ugh). My concern was an increase in iron in my diet. A lot of the veggies and nuts have iron in them. Does the liver have trouble ridding iron of it if its inflammed, I wonder?

I think its time to find a good rheumatologist.

Purpletop profile image
Purpletop in reply to Natura

if you're worried about your liver, the rheumatologist isn't the best person to help, a Hepatologist is.

How do you know you have fatty liver, did you have a liver biopsy? How fatty is it? It is not the end of the world and the liver can recover, you just need the right advice from the right specialist to decide what's best for you.

If you were having too much iron in your liver you'd know it, the symptoms aren't pleasant (similar to porphyria symptoms).

If you cannot handle fat, it is the pancreas who is in trouble, not the liver. Have you checked your pancreatic enzymes and did the stool test to see how you the pancreas deals with fat?

Despite what most articles say, liver does get affected by lupus and I'm not talking about autoimmune hepatitis here. Liver can get inflamed by the general inflammatory process that lupus or connective tissue diseases trigger in the body. The inflammation can be seen on the liver function tests, though, how abnormal are yours? And how long they've been that way?

Natura profile image
Natura in reply to Purpletop

Hi purpletop....i lost my recent bloodwork. I will call again for another copy. I got a liver function test done. They said it was fine, but I like to have a copy to see if my numbers are borderline. This is a hematologist office, not a liver dr, hepatologist. But my last bloodwork, maybe over 6 months ago showed a high AST. Which i belive is a liver enzyme. As soon as my insurance kicks in , i am going to see a hepatologist. I am still having discomfort daily. It got better, but my hematologist felt the fatty cysts through the skin, and said yes, that is where your liver is.

I was just over the top number for AST, so maybe I am not so bad. But, that was over 6 months ago.

Purpletop profile image
Purpletop in reply to Natura

Gosh, the skin is nit that thin so one can feel tiny fatty cysts! What is this guy trying to do to you, scare you to death??

Honestly, try not to take anyone's word for it until you've had a proper test. I had a liver biopsy because my liver function tests were ten times the upper limit. The biopsy found very mild steatosis (fatty liver) and nothing else, which was a relief. There is still a mystery as to why my liver function tests go haywire every so often. But I've noticed that when I have a bad diet for a while, the readings go up. A simple diet, without sugars and gluten, reduces the readings.

Good luck with getting the insurance for the tests. It would be good to see if only the AST is raised or if you've got others abnormal too, that usually shows the origin of the increase. For example, my GGT is always out of range but sometimes my ALT joins it. That suggests bile stagnation, rather than liver, so my gallbladder isn't working as it should. For some reason.

Natura profile image
Natura in reply to Purpletop

Probably my gall bladder too. All my sisters have gall bladder problems. Billiary duct gets sluggish. I am afraid i messed it up with my fat diet i am on. Healthy fats, but coconut oil really slugged me up. I am backing off how much i take now, and see if it gets better.

yakamalayo profile image
yakamalayo in reply to

Wow Twitchytoes, for someone who avoids specific diets, yours sounds amazing! I think you are following a very specific diet - one that you've worked out works best for you through trial and error, rather than one designed or prescribed by anyone else. Every body (two separate words) is different, so whilst some principles are no doubt universal, the details of how each of our bodies responds to certain foods will vary and we need to each discover what works best for us.

The important thing is that we recognise what a powerful role food (and drink) has on our health and our body's ability to function at its best and work towards healing.

My daughter was diagnosed with Lupus just over 2 years ago after a brief but intense period of illness before her diagnosis (about 5 months). She quickly cut out gluten and dairy - not because of existing intolerance, but as the best information seemed to be that these were inflammatory and the gluten in particular can lead to auto-immune issues. She also cut out beef and refined sugar and focussed on lots of fruit and veg, fish, etc. etc. (not disimilar to yours). She more recently became vegan, but for environmental rather than health reasons. Thankfully being vegan and gluten free is getting easier and most cafes, restaurants, shops etc cater for it at home and abroad.

We went back to the specialist in Birmingham last week and were told that her bloods at the last test were normal! For some reason we hadn't received the results and were amazed. We looked on the screen and could see a steady decline in the raised anti-DNA (or whatever), back down from 796 to normal over 2 years, which we hadn't previously realised. Brilliant! Calypso asked Professor Gordon if this was usual and she said that it is a very positive response (she's on Hydroxychloroquine) and the speed of improvement back to having normal blood measures is unusual.

We feel very strongly that the combination of a very clean diet, exercise, suncream and stress-management (major triggers for her) have all supported her well-being enormously.

So this long waffle is really just to say that I think 'diet' is exceedingly important and a powerful tool for everyone to manage their health, but that doesn't mean one particular, published or expert-backed diet will be right for everyone and we all need to make the adjustments that work for us to achieve the best level of wellness (we're aiming for full recovery!) that we can.

Natura profile image
Natura in reply to Silvergilt

Thank you Silvergilt...I am looking into medicare today and staying home to care for myself. I had to lie down because I got really nauseous. I am trying to stay calm, but breaking down after 3 years of trying to treat myself. Thank you for your support. I needed that more than you know.

Cann profile image
Cann in reply to Silvergilt

Actually food is medicine for example celery and flax seeds lower blood pressure. Tomatoes help to prevent prostrate cancer. Berries and green veg. help with eye problems. There are many researches that have proven how the right food can help with health problems.

Chemical drugs can eventually damage the body, but it can take a long time and we don't associate the damage with the drugs. There are many other sources of damage to the body, too, but intoxicating it with chemicals is not a particularly healthy way to go, I know from experience.

Silvergilt profile image
Silvergilt in reply to Cann

I disagree, and I speak as a herbalist of 20+ years. Herbs and certain foods can help, but cure something acute? No, I always counselled people with serious acute conditions to see a doctor first. And all that sort of thing about veg and fruits helping vision was actually put into circulation during WW2 as a myth...to try and explain why British pilots were so good at their midnight targeting runs - it was easier to say 'because of eating carrots to help night vision' than give away the truth: then-revolutionary radar technology! But the myth has stuck, and even health professionals have taken it up.

Sure, things can help - I have my own regimen. But I also need the medication I take regularly; because as good as the food and herbs are in helping with some of my deficiencies, the medication handles the chronic conditions and I wouldn't be able to survive without them. My issue is when people think they will find a Mighty Cure by diet alone, to the point where people ignore their bodies' own signals, all due to fear of 'Big Pharma' and whatever the latest 'wellness coach' has been blogging about.

But that's the sort of thing which honestly can be argued forward and back for eternity, so I'll leave it there.

Natura profile image
Natura in reply to Silvergilt

Silvergilt....I hear you. I have been trying to do this naturally for 3 years through reading extensively, talking to nutritionists, supplementing, etc.

I believe now, that I may need a little more help with controlling the flares that seem to come out of no where. I can try and eat chia seeds everyday for my breathing, but will it fix my high co2 levels in my blood?

I am tired of doing this on my own, and will look for a rheumatologist when i get better ins. I am curious to know what you do take to help you.

Silvergilt profile image
Silvergilt in reply to Natura

You've tried really hard! Honestly, I give you props for that, as well as props to have the courage to acknowledge when you need more help. That's hard too - I've struggled with it myself more than once in my own head: that if I just 'tried harder' I could force my body to accept a particular diet.

TRIGGER WARNING: Disordered Eating

I'm going to health-geek out a bit here, forgive me, you might want to get a cup of tea as I suspect I'm about to blather on.

What I've done (and this is ME, your mileage may vary) is firstly - I stop trying to find a 'cure' or a 'perfect state of health'. The human genome is complicated, and science still hasn't figured it out entirely. There will be things which seem like they are not ideal - but there is no such thing as ideal. The fascination of the human condition is that the human body has a myriad amount of ways it can mutate, adapt, and change itself - and yet, even so, people lead active lives even if their chromosomes aren't in ideal placement. There is no 'perfection' - merely function/non-function/adaptation.

First thing I had to do is find a diagnosis. Everyone can make a shot in the dark and consult Dr Google - and therefore convince oneself they have a particular ailment. And sure, trying to get a diagnosis when you KNOW something is wrong is really hard. But that for me is the first step, before consulting any of my herbal books, before reaching for anything. I need to have that bottom line to work from as I've discovered for me, without medications, I'm in a lot of trouble. Everything is chemicals - and even though modern medicine is not entirely infallible (we're learning all the time), the options were far, far worse, and I'm grateful for the medications I have. If I need any reminder that they're necessary, all I have to do is not take them for a while and see what happens (bad idea!) For every anecdote of people 'killed by medication' I can find just as many studies and obituaries of people who killed themselves by trying to find an ideal diet rather than take medication for their illnesses. Anaemia and bulimia alone are can bear testament to that, and disordered eating is becoming more and more common. Fear is usually the first thing that needs to be overcome when it comes to treating illness, and we all have to find our own way of doing that.

Now with that in mind, I compare a lot of details with scientific and medical studies and keep current - NCBI's website is a good source of studies, and you will notice a lot of studies conflict. I then compare some of the study findings with symptoms I have which are ACTUALLY AN ISSUE FOR MY HEALTH - not just things which don't reach an ideal. For example, I stopped seeing weight as an 'ideal' - and instead of thinking weight loss would help certain symptoms (because studies show people without weight issues have the very same symptoms) I did further research. I discovered magnesium inefficiency as one of the leading causes of many conditions people blame weight gain for, as well as several of my symptoms. I therefore adjusting my magnesium intake accordingly. I have noted a decrease in blood pressure, heart health is better, and my hypoglycaemia is steadying out (a condition which has indeed been linked to the medication I take, but studies are still exploring possibilities). Per my rheumatologist's advice, I increased selenium intake as well, which has helped in other areas. Vit D, etc, all works pretty well, and I've increased my water intake though I still have coffee now and again because, hey, I rather like the stuff.

Then I listen to my body - I've stated before in other posts that, contrary to what every modern system tells people, plant proteins and vegetarian/vegan diets for me are a terrible plan. I've tried, and I made myself HORRIBLY ill. I have realised I have to obtain my protein and iron intake by meat sources, but I do so as sensibly and traceably as possible. It doesn't matter if a hundred different web-pages say a particular food is 'good for you', if your body says it isn't, then it needs to be cut. Soy is right out for me (and I love roasted soybeans!). I consume my fats in as close to a unprocessed state as possible - olive oil, butter and not margarine, even lard occasionally (yes really). If I try something, I keep very close tabs on what I'm feeling/how I'm feeling, what happens after a week or two. I've discovered things that are good, and things that really, really weren't.

I do yoga as well - which I've talked about before. My opinion of it wasn't that great back in the day, but I'm finding it's helping considerably, and not just in flexibility, though that's definitely a perk.

I'm going to try and keep this brief now as I've waffled on long enough (mmmm....waffles), but as I said, this is neither an exact science, nor is it a requirement for you to have it 'all figured out'. I'm still learning, and I'm still applying things as and when, but at the end of the day, I'm maybe a bit more ok with death than most, and I am aware there is only so much I can do. I cannot and will not live forever. Sooner or later, life ends. I just prefer to have the best chance at living I can manage - and that means spending less time for me worrying about an ideal state of health, and more time enjoying life without agonising over what I should/shouldn't be doing with my diet.

I wish you strength, and clarity to find the choice that suits you best!

Natura profile image
Natura in reply to Silvergilt

Wow..Silvergilt....I am blessed to read your response here.( Sorry about the blessed thing if you are not into that)...I am so grateful for this site. I have always considered myself a strong, independent person, but finding I need more friends in my life. Thank you for sharing this well thought out and expressed part of you!

My diet was aggravating my liver a little with the high fat, coconut oil, but helping my dizzy mind. It all went bad when I tried some new product, plant based green food. (Funny that you mentioned that kind of food didn't sit well with you)....It also had probiotics which I do take, but stopped to try this product. 2 days later, yes, it helped move my entire digestive system, but taxed my liver.

I am going to print out what you wrote, because it is so inspiring. My life was surrounded by trying to find a cure, not the best health I can get for my genetic predisposition.

I like how you put the worries on the back burner, and started living a life as best you can.

All my worries stem from my mom dying at 48 ( i was 11). Although she died from ulcerative colitis and liver disease, doesn't mean that I can't. Everyone says that I am not my mother, but my father had health issues as well although he lived into his 70s. I have the same liver spot on my face that he had. (Different side, and mine is larger).

I have 2 beautiful daughters that I adore more than anything in this world. I am working so hard to stay alive for them. This is my motivation.

I am starting to accept the fact that this is my life, and I am not going to be cured. I am working hard to make the time I have left fun, and exciting. I do my best to take my girls out as much as possible, and to enjoy the beauty of nature and life (while my husband sits on the couch, and in bed depressed. He has pain from injuries and this is his choice).

It is a challenge some days. I could not pull myself together after last night to get to work. I took the day off. I use to do yoga often, but find I don't have the muscle or energy to start again. I think I am going to try today. I am still shaking a little from yesterday, but hope to feel better later.

I also have a Breathing for Life cd from Max Stromm. I had done this class with him months ago when he was visiting our state. Unfortunately, I woke up with a massive headache. This is when I realized there was something not right with my body. I need to listen better. And I do what you do. I try a new food, if it doesn't work for me..its out. I no longer eat dairy or gluten. I wanted to make muffins with coconut flour or almond flour, and the functional medicine doctor said to be careful. It is still a processed product. I feel like saying, I can't give up everything! I need my muffins. (Like your coffee).

Thank you for sharing!

Silvergilt profile image
Silvergilt in reply to Natura

most welcome! If I may PM you, I can point you to the yoga practice I'm doing as I had the same issues with doing yoga as you did - typical yoga taxed me too much. I am finding this a lot easier. And I take your blessings with thanks, and offer them back threefold!

I wish you luck and happiness.

Natura profile image
Natura in reply to Silvergilt

Yes.. Would love an easier yoga program. I am trying to incorporate exercise back into my life, as it is important and good for you. I have always been a physical person, and this illness has really knocked me down.

quirkytizzy profile image
quirkytizzy in reply to Silvergilt

I, too, find myself at wits end with those who tout diet as Cure All and medication as something that will kill me. It's like playing Invisible Illness Bingo.

disabledfeminists.com/fwd/w...

Cann profile image
Cann in reply to Silvergilt

You are right I am sure for we are all different. Drugs work for many people, but for others they do not seem to and if given the wrong ones as I was, it can be fatal as it nearly was for me and is for many others.

Natura profile image
Natura in reply to Cann

Cann..I am so sorry you had a bad experience. I do believe we have to advocate for ourselves. Especially with doctors. And if they don't hear us, we need to speak louder. I am very worried I might need medicine as I know my breathing difficulties can hurt my heart. I also have a highly sensitive body, and worried about how it would affect me. I am hoping I will only need to get my breathing back under control, and limited use. I am still pursuing and following my food plan. Take care.

Cann profile image
Cann in reply to Natura

And you, Natura. All the best.

in reply to Silvergilt

I'm with you Silvergilt. Despite having had some potentially life threatening issues from drugs (anaphylaxis from two and Pancreatitis from Aza) I've chosen my new antidote, Mycophenolate, with great care - thanks largely to this community.

None of us are immortal and what matters is that we improve our short to medium term prospects and quality of life. It is possible to look after ourselves very well AND take these powerful medications. In fact I look after myself extra well when I'm on them in order to compensate for any toxicity.

Natura profile image
Natura in reply to Cann

You are right Cann. This diet was being overseen by a doctor.

Food can heal he told me. My blood pressure dropped dramatically. I lost 25 lbs. where i could never lose weight through regular dieting and exercise before.

I do have a clotting gene mutation, and need to watch vit k foods. Which a lot of the food has. Wondering if that has something to do with my breathing difficulties. I know I have high CO2 in my bloodwork. I did have elevated liver enzymes in my bloodwork awhile back.

Cann profile image
Cann in reply to Natura

I have to be careful with vit. K, too, for blood clotting reasons and with many foods, as that is how I know food is medicine.

I was treated at Bristol Homoeopathic hospital by the head of palliative care for 8 years and 13 years in all, until it was closed a year and a half ago.

In 2002, the doctor there wanted me to go into hospital as my liver was so swollen and painful - she gave me very little hope at that time.

I felt more traumatic treatment and drugs could kill me, so I refused, but carried on with the homeopathic treatment.

It is such a shame the hospital closed and I do find it hard to manage it myself, but I know I am so sensitive to so much and have to be so careful. You sound very much like me, but keep positive.

Good luck with finding the right specialist and keep us informed of how you get on.

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK

Hi Natura ,

Here is what 'The Lupus Encyclopedia' says about lupus and the liver;

"The liver can be affected by lupus in many different ways. The most common is an enlarged liver (called hepatomegaly). This occurs in about 25% of people who have SLE. It can sometimes be felt by a physician on physical examination or seen on x-ray studies, but it rarely is a significant problem.

"Liver blood test abnormalities are very common in people who have SLE. The liver blood tests (also called liver enzymes and liver function tests) include AST, ALT, alkaline phosphatase, and bilirubin. These tests are checked regularly in people who have SLE to ensure there is nothing wrong with the liver, either from SLE itself or from medication side effects. The most common reasons for elevated liver enzymes are medications (especially NSAIDs), alcohol use, and fatty liver. Fatty liver occurs when there is an increased amount of fat in the liver and it is usually due to obesity. However, there are other potential causes of elevated liver enzymes that doctors may need to rule out, such as infection from viral hepatitis B and C, as well as gall stones and other problems.

"When someone has unexplained elevated liver tests (and therefore possibly hepatitis), the doctor will often stop any medicines that may possibly be the cause to see if they go back to normal. Other tests such as imaging studies of the liver (such as ultrasound or CT scan), as well as blood tests for viral hepatitis B and C may also be performed.

"If the doctor rules these out, one possible cause is lupus hepatitis. Lupus can cause inflammation of the liver just as it can cause inflammation anywhere else in the body. The only way to know for sure if somebody has hepatitis due to SLE is to get a liver biopsy.

"Lupus hepatitis occurs in up to 5% of people who have SLE. It may be more common in children compared to adults, and appears to be seen more often in people who are positive for ribosomal-P and anti-SSA antibodies. The vast majority of the time the inflammation is mild, causing no significant problems other than elevated liver enzymes on blood testing. These liver enzymes appear to become higher when SLE is more active in other parts of the body, and decrease toward normal when lupus is better controlled. However, rarely there can be enough inflammation to cause serious problems, including hepatomegaly, upper right abdominal discomfort, ascites (excessive fluid in the abdomen), jaundice (yellowish discolouration of the eyes and skin due to excessive bilirubin in the blood, and cirrhosis.

"Hepatic vasculitis occurs when vasculitis occurs in the arteries of the liver. It is a rare problem in SLE and can cause abdominal pain and elevated liver enzymes. It is treated with steroids and other immunosuppressant medicines.

"Antiphospholipid antibody syndrome can also affect the liver, but liver involvement from them is rare."

I would like to echo what other members of the community have said and recommend that you get checked out by a rheumatologist if possible. Have you tried contacting any lupus support organisations near to you to see if they can recommend a specialist?

Natura profile image
Natura in reply to Paul_Howard

Thank you for this information Paul. I didnt think of calling a local lupus organization. Its not that big here in my county, but another county might have something. I will work on that today. Unfortunately, medicare doesnt really have any rheumatologist in their plans. I would have to pay out of pocket. But my husband is getting health ins in 2 months. Thank you again.

Wendy39 profile image
Wendy39

Hello Natura. Just reading your post now and wanted to say hello. I'm sorry to hear you are feeling unwell. Is it difficult for you to get new insurance in the states, because of you having Lupus? I wish you well. x

Natura profile image
Natura in reply to Wendy39

Thanks Wendy. Not difficult to get with a pre existing condition anymore. The US changed that policy years ago. Thank goodness. Just my husband has been a carpenter for 32 years. We only had health ins offered through one employee once for about 10 of those years. No ins is ever offered for carpentry privately. Only unions. Wasnt a good choice looking back. My husband was very loyal to one co and stayed with him almost to retirement.

Anyway, starting a new job with insurance in 2 months. I can get medicare in the meantime.

Thank you for your support.

Wendy39 profile image
Wendy39 in reply to Natura

Thank goodness for that. It's something that we don't have to worry about, just whether we can find or get referred to a good doctor on the NHS. I hope you get some good advice re this issue and that a great rheumy comes along too. x

Cann profile image
Cann

Some Iron pills damage the liver, too, I found and toxins are stored in the fat.

Afterwards I had to overcome my anaemia with food. I would have done that in the first place had I known how to, but foods are different for every one and we have to find what works for us.

Personally I have found very little help from doctors. My GP told me to eat marmite and a big steak. I couldn't digest steak and marmite has yeast in it and I have a yeast problem like many, I suspect due to there being an epidemic of this.

The whole health of the body is about balance and many of us are so out of balance especially in the gut these days due to so much toxicity from various sources around us and including technology - information can be found on this on ES-UK website, a charity that helps people suffering from EHS.

80% of the immune system is in the gut and every stress depletes the balance of the good flora and fauna we need, so do your best to keep stress levels down, not easy these days, but very important. Exercise, plenty of quality rest, stress management, good food and water when needed are essential for a start. Taking other stuff drugs and supplements and foods in isolation like oils are ok for some people it seems, but I can't take any of them and my body seems to need to do it from whole food.

The liver is also the area of the body for anger along with the gall bladder - we have to remember that we are not just clinical beings but whole people - physical, mental, emotional and spiritual. I have been working on addressing all these areas. May be there are issues you may need to sort, too.

Many of us are short on Vit. D, too, due to lack of being outside enough, but even then we need to avoid toxicity where ever possible and this depends where we live, of course, and our access to toxicity low areas.

There are good complementary practitioners about who may be able to help if you can't find a good doctor. Just ask at health shops or whole food outlets locally.

Natura profile image
Natura in reply to Cann

Thank you Cann. Intersting what you said about anger. I did have a lot of trauma in my youth. And I do have anger issues. My mom beating me as a child for one. And then dying when I was 11. I also have other incidences of pain. I am taking it easy today.

My stress is high in my life. Financial stress, driving far to work. I only work part time because I am too tired to do more, and all the household stuff. I am still caring for my daughters who are in high school now. They are helping more.

I do best when I am in nature. Part of the reason i want to move to the country so badly. I need the peace of nature to help me heal. I have tried therapy unsuccessfully many times. And meditation always seems to be unsuccessful for me.

But, I thank you for sharing.

Cann profile image
Cann

You are welcome, Natura,

Meditation takes time. I always start with the breath and sometimes I only get to the breathing stage before I fall asleep! Others, I feel so calm and then I use the affirmations - positive statements of what I want to happen in my life. It is like connecting with my inner higher more intelligent self and the universal energies. I went to classes for a long while before I decided to work alone. May the universal energies be with you in your life. X

Julymoon profile image
Julymoon

Hi, i was diagnosed with PBC early last year you should Google it and though i have read that having both Lupus and PBC is rare there are obviously other people that have both. I do wonder whether the PBC is part of the Lupus catalogue of symptoms as i have suffered with liver problems for a few years before being diagnosed. For me, Lupus has almost had an effect on most of my organs but liver and kidneys are its target at present. I am also struggling with itching and tiredness that i have never felt before. Lupus fatigue i thought was the worst tiredness i could imagine now i have to deal with sudden dropping off to sleep. If i shut my eyes then the day passes me by -i try so hard not to. I write lists of things i need to do and if i manage three then the day according to me has been good. Why am i talking about tiredness when you are asking about your liver? Well `this' degree of tiredness and itchiness didn't start until i began having Liver problems. I have had two serious bouts of Jaundice causing long miserable stays in hospital, two large liver abcesses a mountain of antibiotics and problems with my bile ducts. I had stents put in and i am hoping to see my consultant soon.

Natura profile image
Natura in reply to Julymoon

So sorry Julymoon...interesting about liver. I especially like the idea of rare. I seem to be lucky in getting bad genetics from my mom and dad. I had the extreme tiredness and itchiness. Symptoms got less taking vitamins, healing my gut, and working on fixing my liver through food. I am sure that its not that simple. Everyone is different, and it could be worse for others. I hope you have a doctor that can help you.

I do get those bouts of tiredness when I am driving or at work where I can just close my eyes and fall asleep. I dont know what to do about that yet.

Take care...

Julymoon profile image
Julymoon in reply to Natura

Thanks for you reply and yes i am fortunate to have a wonderful team of Health proffesionals. Wishing you the Brightest of Blessings for the New Year.

Natura profile image
Natura in reply to Julymoon

You too Julymoon....i am going to have to find a team.

nanleighh profile image
nanleighh

Diet is so different for each of us. I think the rule of thumb is to cut out processed foods including processed sugar. Eat real foods that do not have chemicals. Eat healthy fats. And pay attention to your body. If you feel terrible after eating something then cut it out of your diet. For instance almond milk gives me terrible heartburn, so I limit it in my diet. You have to learn what works best for you. I hope everyone has a very happy and blessed new year!

Julymoon profile image
Julymoon in reply to nanleighh

Hi nanleighh,

I have a boringly strict diet, no dairy or sugar, gluten free,mostly lightly steamed or raw vegetables, seeds, nuts and mushrooms, plenty or water, green or peppermint tea and one naughty cup of coffee to start my day.

Brightest Blessings for your New Year.

nanleighh profile image
nanleighh in reply to Julymoon

Sounds like you eat really healthy. Good for you! I hope you have a blessed new year as well.

juneybells profile image
juneybells

Hi I have SLE and liver hepatitis which unfortunately led to cirrhosis before a diagnosis so I can't stress enough please please see a hepatologist as soon as you can. Once I was diagnosed and put on the correct medication the itching stopped and the pain finally subsided my liver is now permanently damaged but stable. Good luck hope you can get the help you need soon.

Sending you love

June

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