on Monday 28 September. .....that I'm looking for a reason to be ill?
Also that she is only concerned with my liver, nothing else. My Autoimmunity is nothing to do with anything, nor the fact I had the tb gland removed as baby - all too long ago to be having any effect on anything now, given I'm 68!
Did I stage a sit-in? Yes I b.........y well did - in her office, I was there 75 mins! I refused to leave till I told her what I wanted I.e. answers, proper blood tests, what gland was removed or affected by the TB! What was causing the, cirrhosis given Alcohol and cancer ruled out, nothing else ruled in!
She can't tell me anything , whilst being adamant that it's nothing to do with anything else I've got, she only looks at livers! I should go and see the Endocrinologist, she deals with thyroids. I told her I'd already seen her in summer and she had said the same, she only looks at Thyroid conditions!
Then said do none of you look at conditions relative to other ongoing conditions? there are links, especially if there is an autoimmune condition involved with various other infections past and present! You must be the only ones in the country, There has been an extremely good Thyroid research paper published by at Montpellier University Hospital recently, and was then told I'd better move to Montpellier!
The only satisfaction I got after that, was knowing that despite having to wait 40 minutes past my appt time, of 12 noon, with the time I'd been in there, she had missed her lunch break, cos the next patient was then sitting there waiting for his pm appt. The only specialist who had taken anything seriously was the haematologist back in summer, he'd had the Gastro appt b/fwd from October to Sept. the only thing she the Gastro is concerned with is the fact, she says, I have varicose veins in my oesophagus, they were found apparently on last years original endoscopy, when I was put on Propranolol, one of the drugs I stopped taking and felt much better for it almost immediately! my oesophagus also felt much better than it had when I was taking them. I used to keep having a reflux after eating some foods, but not after others, all foamy and White, no mucus, no sign of discolouration. Still almost none 1 year on, I do still eat weetabix with milk, try to stick to white meat and fish, had my first eggs in months this week, 2 fried with 2 proper UK bacon rashers and it was lovely, no reflux no anything.
but am now wondering if I'm having too much calcium. I don't eat cheese, only have a little milk in tea and with the cereal, but then I did live on ,that for pretty much 2 years when I didn't have proper cooking facilities and moved 4 times, so yes plenty of stress also.
Another thing I will tell you is that for a few days before my thyroid blood and MRI tests on 23 Sept., I did a self assessment experiment and took no Thyroxine except a on few alternate days, then none for 2 days.
I'm guessing thats the reason my TSH came back at 17.9, when previous in June was 0.05. Nd I was on 87.5, when I didn't forget to take it, and has usually previously been low. It's the other tests for haemo and Gastro, that come back most with markers a few not. The last blood test, exc TSH, of which there were 15, 9 of them had markers for lower or higher than the norms, the rest were ok.
The prescription I was given Monday by Gastro, is Kredex 6.25 mg secable (dry?) half morning and evening. I'm scared to take it because I don't want the liver/bloodstream setting my brain off again. I cant find it on drugs.com to know what it will do to me or to compare with Thyroxin, she said there may be some side effects. I think it's another beta blocker in lieu of propranolol and she also said she can't force me to take it and No she can't, although equally I am trying to be more proactive with my health. I'm eating and sleeping much better since I stopped all the meds, but yes I do still have the occasional 2/3 bad days in a row, but most days I had felt more like my old self than I have for several months, although still with lack of concentration, poor short term memory, hearing and some vision & walking problems, those I know are from B I.
So 4 pm, saw my own GP same day as Gastro and said she's writing to him. Also showed him Thyroid result, and other blood tests, his are on a separate sheet for TSH. Told him I'd missed taking Thyroxine some days over last few months, through forgetfulness, but had just put myself up to the 100mcg.
As it was so recent, I didn't know then what I know now, the itching and scaly dry skin has returned. The little appetite I had got back has gone again, as has the long sleeping peacefully nights, I'm back to waking up every 3 hours or so, but if I wake At 5, then it's often almost 9 before I wake again. The feeling cold most of the time has also returned now, except when wrapped up to sleep. I now have new prescription for the same dose, plus a Slow Release Vit D3. Uvedose 100 000 U.I. its on a once a month prescription for next 3 months, when I'll have my next blood test, last week November. I asked about taking other supplements and he said no I don't need them. I've Never had Vit 12 tested in bloods for him. only other thing I wondered over last couple of weeks is, whether I might be hyper not hypo, discounting last weeks experimental test. I just went on what I was told in 2000. but previous results have had me at lower end of scale, I must check them again.
dr also have me a prescription for Amycor Onychoset pommade, I have fungal nail disease on all left foot toes, which I've tried to clear myself with otc treatments, which don't work.. can't find that cream listed either. Just hope I find my way back to this post to see advice, responses. Thanks for having patience to read it. Shirley.
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A person does not have to be a boozer to have liver disease. Overweight results in fatty liver and chronic fatty liver will end up just as bad as if someone were a boozer. A person can have a fatty liver for an awful long time before problems happen.
Have you had an ultrasound done? I'm sure you've had liver enzymes tested.
Keep eating foods like eggs and bacon. They don't contain carbs. And eat vegetables as well. Sounds like you've had a number of difficult years. Good that you are now living in a situation where you can prepare your own meals. Sugar is your enemy and you need to eliminate it from the diet because this is the sort of thing that when consumed in excess will be stored as fat in the liver. Sorry to say, but if you eat a lot of Weetabix that's also right there in the sugar category.
Yes had ultrasounds and full LFT's, alcohol and Cancer both ruled out. That's why my cirrhosis remains unspecified. I have quarterly blood tests and 6 monthly MRI's.
That's all down to my GP, and the Thyroid specialist who are content to stay with TSH testing only. I'm just having the wrong or insufficient Thyroid blood tests and was given far too many meds for the other conditions. I stand by the fact that stopping them is improving neural symptoms. The portal hypertension has gone down.
Re sugar, I only drink unsweetened tea, sometimes a green or fruit one, no milk, but my early morning cup pas has to be a traditional English one no coffee, I don't like it here, too strong! I just looked at my weetabix pack here, Glucides, of which sucre is 4.4g per 100g. Per Portion of 2 (37.5g) of which sucre =1.7g. Hardly responsible! Yes my eating still has to improve, but thats down to available cooking facilities in a rented property.
I rarely eat biscuits don't eat cakes. I'm horrified at how much sugar the French eat in their lives, in coffee, cakes/biscuits. it's habit to put a small biscuit or chocolate on the saucer when you have one in cafes. One of my neighbors put 3 large sugar lumps in the small cup of strong black coffee! expresso. The Dutch also have a sweet tooth. So tell me why are those 2 nations full of taller slimmer even healthier people when the UK and USA have such high rates of obesity. My Observations also in my local cafe/bar are that they drink much less alcohol, in much smaller quantities, so alcohol quantity has to come into it. Last time I was in Uk, 2 yrs ago, a med glass of wine was same size as 2 here, their large glasses look to hold 1/2 bottle, i.e. 3 small glasses. I'm horrified at what I see on UK tv, when they show what people drink! As to the 'bellies' on some men who down pint after pint, I'm not surprised at the size of some of them. Some, not all, Health problems manifest too often when it's too late, the damage has already been done!
Americans are obese because their servings sizes are at 3 to 5 times the size of 'normal'. And they don't do anything physical. The obesity epidemic is only a mystery to Americans. Dr. Oz encourages them to eat magical things that somehow will melt away the excess weight. It is only in America where the problem of consumption is tackled by yet more consumption. The irony escapes them.
My niece has had auto immune hepatitis since she was 11 years old. Is this what you have? She has been extremely poorly over the years. Her doctors say that it probably started with something as simple as a cold virus which then lodged in the liver and started the process. Why are you seeing a gastroenterologist rather than a liver specialist? That's who you should be seeing. Clemmie
hi clemmie, the Liver Specialist comes under the Gastro-hepato-Enterolgie Dept name at the French hospital I go to. I just put what's on my appt. letter from Hosp. They like to do everything differently over here
I'd like to know what she is going to call my cirrhosis - it's unspecified after the usual LFT's and yes I have Hashimoto's, a Thyroid autoimmune disease,
All this first started and came to light in August 2012, when I was sent to see a Haematologist, had a bone marrow test, which he said confirmed his thoughts I had Myleodysplastic Syndrome (MDS)with a pretty good prognosis for a longer life to follow. 2013 Aneurysm & Brain Haemorrhage. 2014 now living different part of France. Full blood, mri's scan tests at hospital, told by the new Haemo I don't have MDS, then tested for Hepatitis (not that). next appt with Haemo & he said I have chronic Portal hypertension.
Yes I was bloated in the liver region, but not now, which I put down to stopping taking all the different medsI was put on by my GP. He decided I was depressed and/or anxious! Not at all, just v frustrated at all these tests at a time when my my autoimmunity hadn't been diagnosed. Yes I'm still pretty frustrated, he doesn't even get sent copies of tests made by the other specialists. I had to ask this week for a copy of my last MRI results, I don't get those either! I'm just told to go and see the 2 different specialists again in 1 yr for Haemo (white blood cell count continues dropping!) and 6 mths time for Liver now.
This Community, is the one that started me off researching all my health issues, after looking up something for a friend who has problems being HypoThyroid also. OMG I thought!
My marriage had broken up after 45 yrs in 2013, so certainly lots of stress played its part with moving home 4 times in 15 mths and other things that happened. I've learnt from TUK what blood tests I should have been having. That's how The Autoimmunethyroiditis diagnosis came about in 2015, from the Laboratory results! They wrote it on there!
My thinking is that something has to start the process of becoming immune, some thing I was reading the other day on Medline, said infections are the under lying cause, if left untreated - we develop an autoimmunity to something that won't go away! I had the TB infected neck gland at birth, which could well have impacted on either the thyroid, parathyroid, or Pituatory glands. I'm not saying it did, I don't know.
I know from research on HonCode or Trusted websites, that several different conditions, if treated with a host of different medications, can cause liver toxins, leading to neural (physchological and behavioural) problems. It was the "pattern" of several, not all, similar symptoms for different health conditions,,people on these Communities were saying, that got me thinking and searching my own health over the years.
I felt quite chuffed last night, watching the Amy Winehouse postmortem programme and report by Dr Jason Payne-James. You only have to look at the mix of thinks she took over months, years. he had said what I've been saying about the effects on the liver being carried via the bloodstream to the brain. Start affecting the neurotransmitters that send signals and
to the lungs, with depleted oxygen levels also, you top breathing and die!
We don't live Amy's lifestyle, yes I've seen some of the stuff and twitters on the net this morning by dedicated fans, I deplore the manner in which she was portrayed by the programme, just for sensationalism and journalism, but I was listening to the known history and medical facts given.
Those of us with personality changes, confusion, and other neural disorders could do no harm to ourselves, by at least considering what and how we take meds that end up leaving toxins in our Livers. I just know my brain is more alive and steady than it has been in months. I've still got to resolve Thyroid, liver and BI physical effects but I'm getting there. I'm not advocating people do what I do and just stop as I did.
I'm no medical or health expert, just an ordinary human being but I have more faith in scientists and lab technicians than I do my own doctors! Evidence is all!
It is a type of betablocker, but also has the characteristics of an alphablocker. People with hyperthyroidism shouldn't take it, but you have hypo, so that's ok - so they say. But there do seem to be a lot of possible side effects, such as weight-gain and dizziness!
But it also says you shouldn't take it if you have liver problems, so I'm surprised a liver specialist gave it to you...
hi Greygoose, thanks for that info, where do you find it? she said she has given it to me for the varicies in the oesophagus when I queried it. Not that they've been looked at again since summer last year, when I had the Fibroscopy, and it was that Specialist who was looking for hepatitis originally then did the throat down to duodenum fibro. The current Specialist is in same department and took over from last years one! So no don't think I will take them!
I just googled Kedrex, and that was the first result. I am in France, too, you know. lol
I Don't know anything about Esophageal varices - didn't even know it was possible to have them until today - but after asking Wikipédia about it (always my first port of call) it would appear that beta blockers are the go-to treatment in France, but in the English version, they Don't mention them. So, I Don't know how useful they are.
aah didn't think to just Google it, just looked at drugs.com instead, silly me! yes I do also use Wiki sometimes. will look at your links later. The alternative to drugs, could be frequent banding if I wanted to go down that route which I don't! Must dash now.
SAMBS - what about glutin? There is a strong relationship between glutin intolerance and/or cealiac disease and liver problems -including cirrhosis. These days there is a blood test for gluten sensitivity - even a quick blood spot test available which is a useful starting point. The relationship between gluten and Hashis is well known of course. Your weetabix suggests this is not an avenue you've explored? I am gluten intolerant ( need to do a more invasive procedure to rule out cealiac disease which will cost a lot so haven't yet done it) and have ( slightly) elevated liver enzymes and recently diagnosed with Hashis. Like most here the medical bods to date seem incapable or unwilling to join more than 2 dots at a time. All the best -
hi catrich, no never had a gluten sensitivity test done. What does the invasive procedure involve. As said to Gabkad earlier, I had a full,endoscopy done last year from throat down to duodenum, Doc said there was evidence of infection in the oesophagus, took my blood pressure and could alternatively account for it being higher, then did an ecg, and gave me the prescription for Propranolol, the betablocker ?
After having that Endoscopy I was wasn't surprised my BP was high afterwards, it was very uncomfortable when he was at the duodenum end of it, I was somewhat stressed, but it could have been the infection causing it. As to my heart on the ecg , he said it was a good strong one! Last Monday my BP was slightly elevated the GP said, again after that bout of stress with the Gastro/Endo earlier, whatever she is, I was not surprised and again if there is still underlying infection as in the fungal nails! who knows? Infection and autoimmunite have a lot to answer for!
I must go now, as have the opportunity to be taken shopping in an hour, and am out tonight if not tired or too cold. Still something I feel every day.
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