"The one thing I wish I had been told when I was first diagnosed..." Is the potential seriousness of this illness and the potential reversibility if caught before fibrosis begins.
The lesson I have learned is that you need to take control over your own situation and be proactive. Don't wait for the doctor to act, you will wait a long time. Instead, go armed with information from your own research to your GP and be prepared to demonstrate what you have done to improve your diagnosis, for example made diet and lifestyle changes. After that you can only hope that the GP is not arogant and will work with you and not against you.
Try to get a fibroscan to know what you are dealing with and if possible ( I have not managed this yet) get a referal to a specialist.
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mauschen
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It's great that you shared how important it is to take control, be informed and be proactive!
Please get test done for AATD asap, if your in Germany which I thought I had seen you write on the Germans are exceptional on this condition and will test and treat accordingly.. Let me know, there is help the liver with aatd cannot be helped but your correct on life changing behavior making a big difference to this if your diagnosed as a alpha . It makes huge impact so please try not to worry too much also if your in Germany they have IV therapy available to help slow the progression of emphysema down, something the UK continues to deny patients here . Your in a good Country to have AATD please get them to check you and TEST YOU ...ASAP. I sent a link to the testing here in UK as well on your post, but the Germans are well informed on alpha one ..or should be! good luck try not to stress and worry too much I am both Liver, Lung and was diagnosed over 10 yrs back..
Thank you flo1, I will ask my endocrinologist, she seems to be amenable to suggestion. The local GP's in Germany are limited to the laboratory tests they can order, so it will need to be a specialist.
Compared to NHS, the German system seems investigation orientated however, there would appear to be a serious lack of communication between disciplines.
For example, on my emergency admission to hospital 2015, I had a lung CT scan to exclude PE. Incidentally, the scan picked up a massive liver however, nothing was done about it and no follow up requested despite jaundiced scleras. It was only after Hashimoto and diabetes was picked up during a control appointment in 2017 for hypothyroidism that a fibroscan was arranged. We don't realise how lucky we are in the lUK with the NHS (warts and all).',
Unbelievable! I run a small group for alphas I would like to use this as example for healthcare abroad as we are forever run into the ground here would you consent to this ? Obviously I would not refer to anyone by name just what you sent by way of explanation...its totally UNACCEPTABLE..!!! We are constantly told we lag behind from reading this it thoroughly confirms how lucky we are . I have 3 scans booked in for this Month mostly from symptoms and visit to Docs I have a Alpha Specialist who immediately authorised a Scan on my e mailing him with symptoms..i am very grateful after reading this..if you need any further help let me know I hypothroyid too it comes with territory on alpha spectrum as does diabetes. You need help here promptly. Let me know if I can use the info .Your welcome to join our group too if you wish let me know we are on Facebook x
Thank you, you are more than welcome to use this information.
Once I know whether or no I have Alpha, then I would be delighted to join your group. At the moment I am arming myself with information to take to the endo in order to justify the test. Anything you can suggest would be gratefully received.
For your information. I was diagnosed with NAFLD via blood tests in 2012, no follow up, 2015 massive liver noted incidentally on CT, no follow up, 2017 fibroscan confirmed NAFLD and NASH liver now big instead of massive, no follow up, Aug 2017 high resolution CT lung scan picked up hepatitis Steatosis, no follow up. Liver enzymes on routine testing by endo are "normal".
I have a different user name when I use my main computer as opposed to my iPad. I registered on another community with a different user name not realising that I could use the same one.
Thank you. You mentioned lungs and liver on the original post so that is enough for them to test, some alpha's are liver without lung and vice versa, from what your describing you sound to have the outstanding signs and warning of AATD, however this can and will only be confirmed by a simple blood test, I sent links for the test if you prefer they send this to you but as your in Germany will need to know seek out professional advice on this, I can send links for aatd here so you are able to take them with you and ask they do the test, its a finger prick test and quick, simple the German Health Authorities will be aware on this or I at least hope so..if not make them 'aware' we have many UK patients that have not been diagnosed properly for a couple of decades in some instances purely through ignorance of this condition, disease....please ask or even 'demand' !! the test be done on you asap. Can I ask how old you are ,? From what you are describing you have been left in the cold for 5 yrs that is not acceptable in any Country! The problem with AATD is so few think of this and so need to be prompted by the patient in many instances I was fortunate enough to have been tested immediately on presentation of severe emphysema at a young age, something that stands out and does not equate with them.. I will forward you links , all the very best and yes let me know please it will take a couple of weeks for the results it is usual in UK it might be quicker in Germany .. but so worth it to find out, I really hope your going to get the care and treatment you rightly deserve
Click on above links all the information you need to take along is there ..hope this all helps you Remember too we are first and foremost a liver disease with the lungs being a secondary ..good luck !! and keep me posted ..
I get to the home page on the link but can't get the internal links to work.
Instead, I have used this information to open other British links.
After reading the information I come to the conclusion that my daughter might be at risk of this illness. She was extremely jaundiced at birth which did not go away like the other jaundiced babies. Instead, she needed the care of a specialist consultant for the first year of her life.
As for me, I don't have COPD. I have a mixed form of asthma which is an obstructive lung disease. I also have moderate restrictive lung disease of unknown eitiology with reduced diffusion capacity.
My sister, a smoker, has COPD diagnosed without pulmonary function tests and my brother, a non-smoker, has hypersensitive asthma which makes me suspicious as I read that some people are misdiagnosed with asthma.
I will ask for this test and only hope that it is negative because some of the reality stories of those diagnosed are heart breaking.
Indeed we are a really under recognised condition that is fatal by any and all standards of disease today! We try and raise a great deal of awareness of Alpha One, its totally insane that we are not yet there after its discovery in 1963 (2 yrs after I was born) genetic testing at birth is our only and best chance of survival. I hope this becomes a reality as it needs to, CF is relasitcally a very similar disease to us in terms of life expectancy, severity etc..although we are much later in presentation of this awful disease usually 4th decade. Not always the case though that is generalised speaking..very different from the reality we face, I would suggest your 'daughter' gets tested again fairly shocked she was not at the time she suffered liver complications as a newborn, this is very much documented with alpha patients and babies that present jaundice are always tested for AATD..so again, more awareness is very much needed. Your lungs can have all terms of effects from alpha not just the umbrella term of copd, many alpha's have asthma component too! I did not but many do.. I think testing for the family might be a good idea to rule out here. First and foremost though is yourself and daughter .. They do advise all family testing once your deemed a positive so keep that in mind all testing is free here in UK not sure in Germany? Please get this arranged for everyones sake They cannot medicate or cure our livers (not yet) we live in hope as essentially this would be our cure , however there are therapys available in Europe , America, Canada, known as replacement for the protein we so cruically lack, and I do know Germany has this incorperated into treatment programme should they deem it worthy at the time of diagnostic . However the UK denies AATD patients this therapy to date, we continue to fight for rights to better targeted treatments, I take another option in keeping myself as fit , active and positive as possible, I was diagnosed at end stage lung disease with alpha one aged 46 knowing nothing on the condition ..I was given 2 yrs to live aged 47 a year later, I was at 22% fev ..gravely sick, and very disabled, and housebound, I quit every toxin I did and ingested and started to rebound and walk daily with beloved dogs, it took me within a yer to bounce up and double that figure..so take a lot of comfort in that. We can maintain this if we use common sense and work with the disease, I remain stable for nearly 9 yrs and turned 56 this last year! I know a great deal of this disease and how it works to optimize the chances of survival.. Good luck , please get tested and find out where you all are in this genetically inherited disorder..I hope for the negative outcome if I am honest but please be comforted by what I have written here , its not the end of anyone's life its the beginning of a life you have to accept, like every other disease we change accordingly and enjoy a different life but still emphasis the enjoyment part , we learn quickly to adapt in every and any circumstance that is humanity..
I had Fatty Tissue Liver Cirrousis foujd in a blood test, my mother died from end stages of Liver Disease. So, everything that can be done Fibroscan, MRI, another blood test is order next month. I thought the Mayo Clinic but my HMO Kaiser Dr. is very smart and is treating me the best he can. Today we discussed the Biopsy, he is not yet wanting to do that. I had enoscoipy to check for Varies. Clear but pre cancer discovered. A month ago I had surgery to remove it. Now, the excepting how I watched my mother suffer to live 3 months. No thank you. I am going to the Cemetary and make final plans, I have the property, just a file of my wishes, not included in my living trust. i have been married 46 years, we have 2 children who think I am over reacting, just need or want attention. I am pro active with great care and going thru what someone out their who reads this may be also facing. The Fibroscan is done in the Liver Transplant depart, kind of scary. Although it is very nothing, the information is vital to the overall Dr. deciding my care. The type of MRI was not easy at the end, I got ancious. No problem. Now blood tests to determine weather mental medications, diabetes medications I stopped could cause the blood test to elevate. But Fibroscan is a fact, I have to say this is not easy, I feel alone, no one cares, I refuse to transplant as my mother did. Life is one day at a time for me. It will remain that way. I go to a penecostal church, they pray for the sick at the alter every time we have a service. I have become faithful to going to my church. I too have a church and a woman 105 is doing well, I preach landline daily 7 days a week to her. She is of Great encouragement to me. I have looked to Jesus, his power, the Holy Spirit and the Power to Heal as my source. Along with great medical care. I wish you well, peace, care and caring people to love you.
I wish I would’ve been told I had NASH and Cirrhosis was also caused by being heavy most of my life. Ithey thought I was a liar. I thought they were stupid.
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"The most frustrating thing about being diagnosed with fatty liver or NASH is…"
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