Long road and still no diagnoses

Dear all,

Writing to see if someone can shed some light on my huband's issues. His siuation is further complicated by the fact that we have lived in 3 different countries since he first got sick.

It all started in 2012 when he got very fatigued, with headaches and body aches. He could hardly get off the sofa. After seeing a doctor it turned out his liver readings were way off. After follow up with a gastrospecialist they concluded he had Non-alcoholic fatty liver disease. He was at this point a bit on the heavy side and as he improved we thought that was it. We then moved country and he felt bad again, mainy fatigued and headaches. He saw a specialist in Singapore who also though he had NFLD. However, as he was not happy with this doctor and he had lost 15kg and started excercises he saw another gastro specialist in Singapore. A great doctor, who he then stayed with for about 2 years. During these 2 years he have had several rounds of bloods tests, ultrasounds, liver biopsi and gastroscopies and endoscopies. After the initital tests and round of eliminations, PBC was a possibility although he is AMA negative ( also tested several times). He was put on a round of Ursofalk. He was also diagnosed with Tropical Sprue and put on antibiotics. Over the years he has dips of fatigue, body aches and headaches and his immune system seems to be very low. His vitamine D levels are low. As it was all looking like PBC the doctor finally did a biopsi. He even said to my husband he was getting rather sure it was PBC, something he has never said before. However, luckily the bioposy came back fine! The Dr. could not believe it and had them re-run the tetst. As he continued to feel rough off and on he had another gastrscopi which confirmed traises of Tropical Sprue (fatigue is the most common side affect) so he was put on antibiotics again.

As he continues to have dips in his health we have a niggling feeling there is something more. Could he still have PBC even being AMA negative and having a clear biopsi? I am not 100 % on his readings but think is AST has ranged from 94-27. ALT from 99-34 and GGT from 251-34. He has also on a few occasion been a bit sore on his liver.

It has been a rough road with highs and lows, thinking it was PBC and then so happy it seemed it was not. However, something is not right and we are tip toeing around it. I am constantly looking and watching his health and he is doing his best to ignore it..... We are comforted by the fact that his liver biopsy was find and that the Dr in Singapore was great BUT..... Looking back I think he has had these issues much longer, remembering him having odd bugs and dips way back. He has also lived in some odd places (Nigeria, Liberia etc) and had malaria.

We are yet again in a new country (Switzerland) so do we again try and find a good Dr.? What will they find that the Dr in Singapore could not????

Anyone has any ideas?

Thanks!

17 Replies

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  • Hello ingestedt.

    My initial thought was that your husband perhaps does have NAFLD as it is also known. If your husband has had a liver biopsy then it usually determines if that patient has PBC due to cell changes throughout the liver. (I was diagnosed without requiring a biopsy. I am in the UK and I saws my GP as I had been itching intensely for a fortnight. That then led to blood tests which showed above normal liver function test (LFTs). I then had another blood test that determined if it was liver or bone related as LFTs that are above normal can also present in bone issues. I eventually saw a hospital consultant following a scan (that showed up pretty much normal) and he took more blood and found I had a high titre of antibodies known as AMAs that can be present in PBC. These 3 factors in my case could give the diagnosis of PBC. I stated taking urso December 2010.)

    Fatigue can present in liver issues, not just PBC as can itching. Itching and fatigue are the most commonest symptons.

    I expect your husband will be monitored for LFT changes and also one that is regarding the liver, the GGT and a doctor would act accordingly. It has to be noted too that certain medications can cause the LFTs to rise (for instance morphine can) and a doctor would be made aware of this when looking at the results.

    There is a website here in the UK - British Liver Trust that provides leaflets on liver conditions, NAFLD is one of them. I shall pop the link on and you might want to download it. You might find it of some interest.

    Personally I'd try to concentrate on a healthy diet and I think I am right in saying a diet that is low in fat here (I try to keep my diet low in fat anyway as in PBC our bile ducts can leak, the urso we take is a component of bile to add further to the system to aid better digestion. Bile required for fat break up, figures to me to have less, even though pre-diagnosis I didn't partake of overly-much but we do need fat for the fat soluble vitamins).

    My motto now I have PBC (I am now 52) is to get on with life, live it and enjoy it. I'd rather not waste it thinking how I might become, to me that would time spent worrying about something that might never happen.

    britishlivertrust.org.uk/wp...

  • Hi Peridot

    Thanks for your reply! You are right in that one should not worry too much about the future. I think in a way it is just hard not having a proper diagnoses. Having lost about 15kg, exercising, no drinking and eating a well balanced diet he does take good care of himself. Surely, there must be a reason for his liver readings being poor of and on and him feeling really rought. If indeed, it can still be PBC, he should be on Ursofalk to prevent the illness getting any worse.

  • Hello once again ingestedt.

    Just received via email the latest Bear Facts mag from PBC Foundation and thought of you regarding your mention of NAFLD. There is an article in the latest Bear Facts all about fatty liver disease that might be of great interest to you. At this stage I've not yet read that article so cannot comment.

  • Thanks peridot,

    as I am not (yet?) a member of the PBC Foundation I do not get the mag. Any chance you could copy me the article?

  • Hello ingestdt.

    Unfortunately I can't message via this site a copy of Bear Facts, won't let you. Plus it is a pdf. Check out your personal message, I'll see what I can copy and paste from the page where it is.

    You only have to give your name and where you live to become a Member of the PBC Foundation. That simple. You can read the PBC binder online as you'll be supplied with details how to access Members' Section on their site and you can opt to receive Bear Facts via emails.

  • The symptoms of tropical sprue are so very similar to celiac sprue, has your husband been tested for celiac.

    I have a friend who is celiac and there have been times when he has shown some odd LFT readings, low vit D and was also told he had NFLD.

  • Hi Candy

    Thanks for your reply! Yes he has been tested for Celiac. The doctor said that the: "Anti-tissue transglutaminase was negative. This effectively excludes celiac disease." After a range of tests the Dr. concluded it was either tropical spure or primary biliary cirrhosis (AMA negative variant). But with the biopsi being fine PBC was ruled out. Unless, I suppose it is still at such an early stage that it would not show up on the liver biopsi. But that would also be weird given his liver readings have been so off.

    Thanks again for your reply

  • I was reading about Hashimotos it's similar to PBC.

  • Dear Twinkle, Was trying to look back on his tests but not sure what tests have been done on the thyroid. But given the extensive testing I am rather sure the Dr. in Singapore also tested his thyroid levels but will find out for sure. Thanks for the tip

  • Hi Ingestedt,

    I read your blog with great interest. What I have found is that it is so difficult to make a firm diagnosis, as the powers that be in gastrology do not know the answers to everything and much research is taking place for PBC.

    With your husband moving to so many countries over the years, it may be that he has picked up a lingering bug which has remained in his system. I read a short while ago in one of the UK daily papers, that a woman bitten by a sandfly 9 years ago, has only been diagnosed as having parasites in her throat, causing infections, as a direct result of the sandfly bite.

    One main reason for replying though, is that you mentioned your husband had a low deficiency in vitamin D but you didn't say if he was taking supplements. I too had very low Vit. D deficiency and have been taking a strong course for 10 weeks and I can say now that it has changed my life. I have gone from being lethargic and non-motivated in doing anything, to being full of energy, which has changed by day to day living. I just feel so much better.

    Hoping that this helps.

    Kind Regards

    YummyBear

  • Dear YummyBear,

    Thanks for your reply. Yes, he is taking vitamine D suppliments. Have to follow up and see how much and if indeed he is still taking them. What brand did you take and how much per day? I suppose the intestine system is so complicated and reserach is still developing with new studies coming out showing how much it is indeed linked to the bigger picutre!

  • Hi Ingestedt

    Details for Vitamin D .

    Pro D3 (Cholecalciferol) - brand Synergy Biologics888 20,000 IU 30 capsules. 3 to be taken once a week for 10 weeks.

  • Has anyone mentioned PSC in the small ducts?

  • Hi, yes I believe he has been tested for that. Dr report says; pANCA and cANCA negative - test for sclerosing cholangitis.

  • Dear all.

    First a thanks to all of you who have provided comments and advise. As we have recently moved country and not settled in the health care systems yet husband went to have his bloods done when he travelled back to our previous location for work. His LFTs were as follows: ALT 45, AST 44, GGT 131 and Bilirubin 1.10. So clearly his readings are still off, some just slightly but this GGT are more than slightly off. His colesterol was a tiny bit high, especially is Tryglicerides. He has been feeling tired and off for a while now so he was not suprised that his readings were off. My gut feeling tells me it must be PBC but then why did the biopsi not show anything? All his fiberscans and US have been fine. He will communicate his results to his previous dr in Singapore and I suppose it is time for find a doctor here in Switzerland.

    Any thoughts or ideas are much welcome! Has anyone else had this much trouble getting a diagnoses??

    Thanks

  • Hi ingestedt,

    It sounds like you've got a lot going on here with your husband! I'm not a doctor, and I don't have a lot of medical training, so please check with your doctors and follow their advice, not mine. I do have some thoughts on his symptoms, though. Right or wrong, they are just guesses.

    From what I gather, your husband started out with fatty liver disease, but he made lifestyle and diet changes, lost weight, and the fatty liver disease has resolved. Is that correct? His scans should show that there is a normal amount of fat in his liver. If not, then his health has not yet improved enough to rule out fatty liver as the cause, or one of the causes, of the fatigue, headaches, feeling bad in general, and low vitamin D.

    So far as the AMA-negative PBC possibility... there is a small chance that the biopsy was taken from an area of the liver that is not inflammed. And there is a small chance that his PBC is in such early stages that Alkaline Phosphatase and Bilirubin are not yet elevated. If the Ursofaulk is helpful to him, I would request that he stay on it. Its a bile supplement that can help the liver and digestion, and something is causing his liver to be inflammed.

    For his bloodwork, it sounds like he spikes up and down on the liver enzymes - is that correct? Sometimes they are high and sometimes they are normal or only slightly elevated? This makes me think that there is a trigger that causes stress on your husband's body, including his liver. There are a lot of things that can cause this - sometimes something as simple as having a few drinks or a meal that was difficult for the liver to digest. Sometimes its the immune system flaring up.

    Currently, his bloodwork shows that all the liver enzymes are near normal, except for GGT. You can read about what each blood test means here: labtestsonline.org/understa...

    Isolated GGT elevations are a special case because it does indicate liver inflammation, but not necessarily liver disease. I found an article that explains it pretty well, they call it GGTP but it is the same thing as GGT:

    "The GGTP level is too sensitive, frequently elevated when no liver disease is apparent. A GGTP test is useful in only two instances: (1) It confers liver specificity to an elevated alkaline phosphatase level; (2) In aminotransferase level elevations with AST/ALT ratio greater than 2, elevation of GGTP further supports alcoholic liver disease. In addition, it can be used to monitor abstinence from alcohol. An isolated elevation of the GGTP level does not need to be further evaluated unless there are additional clinical risk factors for liver disease"

    clevelandclinicmeded.com/me...

    This makes me feel that we should take the focus off the liver for a minute and explore other causes. Keep monitoring his liver for sure because there is a chance that he could develop more fatty deposits and/or PBC, but put it on the back burner for now until his bloodwork shows otherwise. His liver has been under a microscope (literally!) for years, and you have not come up with definitive answers that have made a difference to how he feels. I'm sure his health has improved by watching his diet and exercise, but lets see if we can really get him feeling better.

    So it looks like he was diagnosed with Tropical Sprue and put on antibiotics. Then he was diagnosed again with Tropical Sprue via endoscopy and put on antibiotics. Symptoms of Tropical Sprue include fatigue, headaches, and body aches. Whatever it is that causes the sprue (usually bacteria) resides in the lining of the upper intestine near the stomach and liver and does damage to the lining, causing malabsorption of vitamins and minerals, which can cause Vitamin D deficiency. When they say they see "traces of Tropical Sprue" on the gastroscopy, that means they see damaged areas. The treatment of Tropical Sprue is antibiotics for extended periods of time, sometimes up to 1 year of antibiotics. A lot of times it clears up easily and is not a problem. In some cases, the treatment is not enough to get rid of the infection, so it flares back up again. It becomes chronic. This could explain why your husband has "dips" and feels fatigued on and off. It could also explain spikes in the liver enzymes as infections can cause them to be increased, and as the infection tapers off, then the enzymes come back down.

    If your husband is following a lot of symptoms of PBC, that would make sense because his immune system is flaring up and down, but instead of an autoimmune trigger, it could be this stubborn infection.

    Another thing to investigate is the damage done to the intestines by the Tropical Sprue, as seen on the gastroscopy. Since he has had other infections, like malaria, and likely multiple rounds of antibiotics, he might have a weakened intestinal lining for many reasons. Try researching some terms like "Leaky Gut Syndrome" and "Microbiome" see if that helps. Get the details from his doctor on what Vitamin D supplements he should be on and get serious about his vitamin and nutrient levels are. Malabsorption issues can make him feel very bad. Just getting his Vitamin D level up can make a world of difference in how he feels, as many on this forum can attest to that!

    It's unknown what actually causes Tropical Sprue. It could be bacteria, amoebas, a virus, they aren't really sure, but the infection causes damage to the intestine lining and then that causes bacterial overgrowths. The antibiotics really target the bacterial overgrowths, not necessarily the initial infection, to get things under control. E. Coli (Escherichia coli) and bacteria in the same group are normally associated with Tropical Sprue, whether it be the initial cause or the resulting overgrowth. Recent studies have focused on the role that chronic infections might play in the development of autoimmune diseases, and E. Coli is one that has been linked to autoimmune diseases such as PBC, Rheumatoid Arthritis, and IC (which my grandmother has).

    everydayhealth.com/autoimmu...

    amymyersmd.com/2016/03/conv...

    hindawi.com/journals/ijh/20...

    So please, take the Sprue seriously and get him cured and verify that it is cured, as it could possibly develop into PBC or another autoimmune disorder.

    Again, I'm not a doctor; I just read stuff on the internet and have some limited experience in healthcare. My thoughts are not intended to be medical advice or take the place of your doctor's instructions, as that would be against the rules of HealthUnlocked.

  • P.S. - if any of these links are selling something, I don't recommend buying them. I just liked how the information was written.

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