Cirrohiss of liver and diabetes

[angse]

Hello everyone I am quite fed up at the moment, have cirrohiss and type ll diabetes have had the diabetes for 9 years without treatment,, diet controlled, problem being have been unwell for few months and my sugar levels went high, although I'm much better now they remain high after blood test for diabetic level, my gp wants to put me on treatment but doesn't know which one because of the cirrohiss, so now I have to wait until 21st December to see my heptologist to see what he says, sorry couldn't be more fed up at present as my gp left me with low haemoglobin for 3 months nearly killed me couldn't walk or even get out of bed in the end, I should have been having blood transfusions, so you see no faith in my gp, sorry for all this no one else listens really. Annette !!

[susieanna]

Firstly, id say, make an appointment with another gp at the practice...make an urgent appointment...this GP is obviously crap . Some GP' s dont want to prescribe anything at all medication wise cos of the liver and will only do so under the confirmation of the Heptologist... cos they are very scared of giving something that might make the liver worse............id also recommend contacting the Heptologists secretary....explain the situation and im sure she will get a message to him/her and then he/she can confirm what treatment you can have re diabetes; id do this today if i were you; that way, you will get a quick answer hopefully......maybe give your gp's details to the secretary and the heptologist can write to/ contact the surgery...... I dont understand why your GP couldnt have contacted the Heptologist, given the urgency re your diebetes.......but do it today yourself. Good luck

[angse in reply to susieanna]

Thank you very much for advice doing that right now will let you all know Annette !!

[Hidden]

Hi Annette, your first priority is to get a new GP who you can trust and then get him/her to get you an earlier appointment with the hepatologist. Before my transplant I was diagnosed with diabetes 2 and prescribed Metformin which I understand is well tolerated and effective. Ther was no suggestion that this would adversely affect me despite having cirrhosis. I have been on this for 14 years and it is effective in controlling blood sugar levels. Hope you can sort this quickly.

[angse in reply to Hidden]

Thanks Mike will take all your advice, gp said metmorfin would damage my liver further, so what he's doing is pushing all responsibility on to my heptologist. Annette

[Bermuda1]

I agree with Mike re the metaformin, but it does need regular blood tests , monthly or bimonthly as it can cause some spikes in some people . Although It is being globally accepted more and more, whereas once it was though to be every damaging , it is not a certain threat.

[angse in reply to Bermuda1]

Thank you bermuda1 will certainly take your advice on board. Annette

[ballie52]

Hi Annette that's awful to be treated like this by a GP..Most of them are limited to time and don't even take the time to check your history..no wonder you feel low..hard enough dealing with cirrhosis and all that goes with it never mind added health problems..I really feel your pain..hope you can get yourself sorted out soon Xx

[angse in reply to ballie52]

Thank you ballie 52 your concern much appreciated will let you all know when I'm treated, I must say though had a good run 9 years with type 11 diabetes diet controlled. Annette

[SAMBS]

hi Annette, sorry I'm going to go against the grain of preceding comments.

I moved to France from UK with hypothyroidism only, in Jan 2008, in seemingly good health otherwise but my health pattern is similiar to yours and I can understand totally your doctors reluctance because of my ongoing experiences here now during last 3-5 years.

I have brain injury, through spontaneous aneurysm and brain haemorrhage/coma in 2013 I also have unspecified cirrhosis 2014, plus now a host of minor things like vitiligo and occasional infections in ear, cystitis, plus last wiinter bronchitis.

Ongoing overweight, not through over eating or drinking - the Thyroxin was not sorting out my metabolism. About 2011 there was an anomaly in my quarterly blood test, I was diagnosed as 'borderline type 2. The doctor put me on Metformin 500 mg a day ((my husband by then was up to 3 x 800 with no ill effects from it) However within several months on my dosage, I was losing muscle strength, feeling quite lethargic/tired and starting to get a bit 'more' ratty. A scan revealed I had a swollen spleen. (It's possible the Metformin and Thyroxin were counteracting each other.) However research revealed to a NHS qualified but alternative therapist expat friend that Metformin can affect blood cell production. The white cells are for fighting infection the red cells carry the oxygen around the body via the liver. By August 2012 my doctor had another anomaly and ordered further blood test And by the October I was seeing a haematologist where I had a bone marrow biopsy.

He definitely diagnosed at next consult Dec 2012 a condition called MDS, MyeloDysplasticSyndrome in English, possibly Myelodysplasia in French. Cell count down to 50,000 consistently over the years the Normal range has been (150,000-400,00). at that time I had 50,000. My white cell numbers I think we're down but the red cells were thickened and abnormal in shape.

I had moved area after BI and marriage breakup, was with a new GP, then spent a day in hospital having, blood tests am and pm, brain and other organ scans, you name it I had it! There has never again been mention since 2nd move here,of Type 2, although it's on my medical records and seen by all docs on their computers with production of my compulsory health card, in fact I lost weight after BI and move away. I've been tested for Hep C and other types of Hep. Because I keep asking my GP questions, he decided I was anxious and started doling out various types of Antidepressants - only 1 helped with balance issues effect of BI. I've also had both eyes cataracts removed in March this year. I've had so many different drugs from Jan '14, that last autumn I decided to stop taking all except my Levothyroxine. For my PBC? it's unspecified by anyone here despite testing for alcohol or cancer, just known that I have cirrhosis, for which, of the 2 Interne liver specialists I've seen here 1 wanted me to take propranolol - a definite no- no with Levothyroxine, and now the other wants me to take something called Kredex because I also have oesophageal varicies, cure for that 'apparently' is either take more medications or have banding done or hope they don't burst and drown me while choking. No I'm not joking - but all those meds have done me no good, toxins left in liver,were affecting me with similiar brain injury affects. Brain fog, confusion etc etc.

it's taken me a year to be confident I've detoxified my liver totally as a result of mixing meds, my oesophageal varicies also seem much better, there was an infection there at the time, my Hypothyroidism is now Autoimmune this year, (it could have been the liver causing the autoimmunity! I need to have a test for liver antibodies not connected with the thyroid specific tests I.e. TSH, Free T3 and Free T4.

Trouble is I don't what they would be - and as in UK doctors are often reluctant to ask for things if they don't understand the whole picture, through my own research I know more about what's happening with me in total, than my doc and 3 specialists do, because they are also not making connections between one thing and another. Not their specific areas of speciality I was told by 2 of them. I even got quite aggressive with Thyoid and Liver ones saying they should be looking at my whole health, it just the organs they specialise in! it interested!! !

I am quite emotionally and mentally exhausted with the lack of interest by medical professionals!

However, I was heartened to read of your own GP's reluctance in your specific health circumstances. He obviously wants to find out or know more about what's going on with you with your sugar levels before loading you with a possibly inappropriate or extra medication! Don't change your doctor, go and talk to him seriously, ask what his concerns are, also ask for copies of say, last 3 blood test results and then check them out at labtestsonline - check the meds out at drugs.com! Even post on here or the Thyroid UK Both good websites, but you will need to register online with them.

I'm not medically qualified at all - just another patient living abroad now who needs to understand all the whats, whys and wherefores in my own language and culture.

thats why I put so much detail about what's happened with me in last 3/4 yrs, I'm 68 now, and want to make most of quality of life I still have by helping myself where doctors don't seem able to help me.

best wishes and good luck!

[angse in reply to SAMBS]

Thank you Saambs sorry you been through so much illness and emotional upheaval, I dot take hardly any drugs but one I do take is propanol for my varices as they burst in 2013 resulting in a 5 pint blood loss family told would not survive did obviously, varices banded now obliterated hopefully wait to see when I have another endoscopy my spleen is enlarged due to cirrohiss, white cells very low, so is haemoglobin which happens now and again only treatment for that is blood transfusions, I am on iron pills for 2 years ever since bleed, but will have to see my heptologist for treatment for diabetes as can't leave that uncontrolled I will see what happens when I see him. Annette

[hippoHH in reply to angse]

My husband reacted badly to something called Repaglinide when he was diagnosed 4 years ago. He was told that if he needed treatment he would need to go onto insulin as that wouldn't damage his liver (He has NASH). Fortunately we've controlled it with diet since. It may be that they have developed better drugs since then.

[angse in reply to hippoHH]

Yes I hope they have, its just a shame I had it diet controlled for 9 years never mind there's people worse off then me thank you for message. Annette

[Hidden]

Skin up

[pear-shaped]

Dearest Annette,

I have bee worrying about you as I had not seen any posts for a while...

You do need to follow all the advice here... How are you now? Any luck with the GP?

Wishing you all the best.

Do keep us updated.

Pear

[angse]

Thank you so much pear for your kind message, I have not posted as been very unwell for some time, my gp didn't even recognise my haemoglobin dropped to a dangerously low level, he knew it was very low he said so and said that was why I was so ill, and to go home and rest I was already doing that for 2 months eventually breathing so bad as oxygen so low could not speak, brought my daughter to surgery so she could do all the talking, went home back to bed could not get out of it was an extreme struggle, I was like this for 3 months that's when diabetes started to get high gp told me not to worry as it was because I was ill, I eventually demanded to be seen by hemothogist who said haemoglobin so low I needed transfusions, she could not understand why he must have known how low it was and she said when it drops to that level it calls for urgent transfusion, I won't go to him again I don't trust him, but unfortunately the others not to good either, I have to stay there as next surgery quite far and if I get ill like that again I would never get there, tried calling my heptologist on Friday no reply try again Monday and let you know, how are you doing Annette

[pear-shaped in reply to angse]

Dear Annette,

Is there a walkin surgery or urgent care one?? Sounds a bit cheeky - but sometimes if you see an out of hours GP they often get things moving - or go to a and e at your liver hospital and be seen there? There seems no point in trying to get your surgery to take any responsibility - this way you bypass them and get the medical care you desperately need right now... Liver disease is a race against time and will not wait for your GP to get there act together... As you are already under a hepatologist - should be seen in a and e - by on call registrar or consultant.

Hubby is home now - weak but progressing in the right direction... Waiting to see what scans say over the next few months.

All the best Annette.

Pear