I just wanted to keep track of my blood test history here. I got the blood test results back and wanted to post an update. Summary: liver good, Vitamin D was down and causing fatigue (easily remedied), and I need to be more strict with diet.
Bloodwork:
AST (normal 0-40)
Oct 2015 - 113 High
Nov 2015 - 57 High
Feb 2016 - 14 Normal
Jun 2016 - 20 Normal
ALT (normal 0-32)
Oct 2015 - 170 High
Nov 2015 - 92 High
Feb 2016 - 17 Normal
Jun 2016 - 22 Normal
Alkaline Phosphatase (normal 39-117)
Oct 2015 - 49 Normal
Nov 2015 - 45 Normal
Feb 2016 - 49 Normal
Jun 2016 - 43 Normal
Bilirubin (normal 0-1.2)
Oct 2015 - 0.8 Normal
Nov 2015 - 1.8 High
Feb 2016 - 1.3 High
Jun 2016 - 1.3 Normal - (this lab has normal range .2-1.5)
Bilirubin, Direct (normal 0-.4)
Oct 2015 - not tested
Nov 2015 - .27 Normal
Feb 2016 - .25 Normal
Lipid Panel:
Cholesterol, Total (normal 100-199)
Nov 2015 - 214 High
Feb 2016 - 175 Normal
Jun 2016 - 219 High
Triglycerides (normal 0-149)
Nov 2015 - 209 High
Feb 2016 - 138 Normal
Jun 2016 - 172 High
HDL Cholesterol (normal greater than 39)
Nov 2015 - 38 Low
Feb 2016 - 42 Normal
Jun 2016 - 51 Normal
LDL Cholesterol (normal 0-99)
Nov 2015 - 134 High
Feb 2016 - 105 High
Jun 2016 - 133.6 High (this lab has normal range 0-130)
Vitamin D, 25-Hydroxy (normal 30-100)
Nov 2015 - 21.4 Low
Feb 2016 - 49.4 Normal
Jun 2016 - 33.8 Low Normal, with symptoms of fatigue
Treatment Plan Progress:
Fatty Liver Disease - All is well. Bloodwork is in normal ranges, and 2 months ago my MRI showed a lot less fat in the liver.
PBC - All is well. Bloodwork is in normal ranges, and 2 months ago my MRI showed no signs of damage to bile ducts. Continuing the Ursodiol with no side effects.
Cholesterol/Triglycerides - In Feb I was very pleased to see blood lipids finally in the normal range. However, they have come back up. Since Feb, I have been eating less healthy foods "in moderation" and being less strict about my diet. My weight loss has stalled. I have also had a hard time exercising due to increasing fatigue. My goal is to get more strict about my diet because "all things in moderation" is not working for me.
Vitamin D Deficiency - Since Feb, my levels have fallen and my fatigue has been steadily increasing. Technically my Vitamin D levels are in the "normal" range, but I think I feel best when they are on the high end of normal. Prior to Feb, I had been taking a mega dose of prescription Vitamin D once a week. But in Feb, Vitamin D levels were normal and I felt good, so the doctor switched me to a daily over the counter Vitamin D supplement. Since then, my fatigue has been steadily increasing. I have not been able to make it to the gym like I could do back in Feb. I kept thinking that it was a phase and it would pass. After the June blood testing, I went to the beach for a week, got a tan and plenty of sunshine, and my energy levels came back! I bet if I repeated the blood test right now, it would be more like 50. So I have doubled my over the counter supplement and my energy levels are pretty good. I am finally able to adhere to my exercise goal of weights 3 times a week and cardio twice a week. I expect to lose weight in the coming weeks.
As a side note, TSH has continued to be normal, indicating my thyroid is good.
Written by
chynablue
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I use a vitamin D under the tongue spray as I am so fed up with taking tablets. I get it from Better You - betteryou.com/ and have recently purchased a multi vitamin which contains K2 and CoQ10 (am on statins). I am waiting for that in the post sometime next week and am hoping this will help me feel better balanced.
I have just bought an indoor bike which I am hoping will help with my weight.
I use that vitamin D spray too! My vitamin D levels went from low to normal and that was the only supplement for vit D that I had taken.
Exactly, so much easier than another tablet to remember and try and swallow down!
Hello chynablue.
Fatigue being a common sympton of PBC as well as itching (I as you probably know by now if you read site regularly I have just the latter), expect other factors can cause it to feel more troublesome.
Vitamin D tends to be for good bone health. I am at present utilising the sun at every opportunity as being in the UK and in the North West England, we never seem to have as much of it as our Southerly neighbours.
The fat soluble vitamins apparently can be a problem with absorption with PBC. We need the K for blood for eg.
Another vitamin that can add to someone feeling tired is Vitamin B. Don't know if you've had that checked recently.
Early diagnosis of PBC for me December 2010 showed a few months following that my Vitamin D levels were classed as 'a bit low' but the consultant wasn't recommending supplements at the time. Due to his description of the result I asked for a figure and it was on the line. I soaked up what sun I could 2011 and got a normal result on a recheck.
I find I feel more energetic in the lighter nights and warmer day months than during the long depressing winter months. I think anyone without an health problems can also be the same.
Great results, so pleased all seems to be improving.
Any idea why they don't check GGT? My consultant says he is always most concerned to look at ALP and GGT, so has yours said what it is about your specific PBC that it's the AST and ALt that are out of kilter?
I must look into getting my Vit D checked too - thanks for the nudge, as I've never had mine checked.
Well done again - esp the exercise! - and take care xx
Hi GrittyReads, I'm not sure why they don't include GGT. My doctors order the standard Liver Panel and GGT is not on there. I wondered that, too. Perhaps it is a US vs UK thing? I will try to ask next time I see the liver specialist.
My AST and ALT were elevated due to fatty liver disease, not PBC. AST and ALT indicate that lever cells are being damaged. There were too many fatty deposits in the way for my liver to function correctly.
I am in the UK, but I had to ask my GP to include it on my annual blood tests, when I discovered that it was one of the tests that a new consultant I was hoping to see (this was nearly 2 years ago), set most store [initially] by ALP and GGT going up. The labs my GPs send their tests to, don't do GGT unless the test is requested, specifically. I would ask your medic to check it.
Also, although I'm sure I've read some of your other posts in the past I cannot remember the details: was your ALP up? ... and it has gone down since you've been on Urso?? If ALP wasn't up, why are you diagnosed as PBC? ~Sorry to be so nosy, but I'm most curious about these differences across/between continents and medics.
Thanks for the advice on GGT. I've seen from your other posts that you are knowledgeable about the diagnostic criteria. It seems to be a bit of a controversial subject, but I'll be glad to share my diagnostic experience! I'm glad that you are curious about it. Knowing the criteria is good, but if we aren't seeing improvements in our health, then we should absolutely question our doctors and the medical field.
I actually don't meet the published diagnostic criteria perfectly. Sometimes all we need is a second opinion or a doctor that will act as an advocate for our health and let us try a treatment to see if it shows improvement, even if the criteria is not 100% met.
My ALP was never abnormal. ALP doesn't usually increase until there is actual damage to the bile ducts. Because I am in the early stages, they caught PBC before major damage occurred. The hope is that putting me on Ursodiol will prevent or delay the onset of damage. The doctor said that when he was investigating possible Fatty Liver Disease (which was later confirmed), he got lucky and caught the PBC early.
It might be interesting to note that my mother and my grandmother have always tested way below the normal range for ALP, like single digits. Doctors don't know why, they just say its not a concern or an indication of any disease they need to check out. To which my grandmother asks them, "if low ALP is no problem, then why have a lower number to the normal range? Why not just start the normal range at 0?" No one knows. So, if genetics play a factor, then perhaps my ALP level is abnormally high for me, but in the normal range for most people.
In October 2015 I went to see a Gastroenterologist who works with a Liver Specialist, so he was familiar with PBC and liver diseases in his own practice as well as learning from her experiences as well. He is experienced, communicates with me well, and is well educated, which is a requirement for me now. I had to fire 2 GPs in the past who did nothing about elevated liver enzymes for over 2 years, telling me it was fine and would probably resolve on its own. Those GPs did a lot more harm to me than good by taking no action.
In October I tested positive for Mitochondrial (M2) Antibody at 118.8, (positive is anything over 24.9), and I had signs of chronic liver dysfunction: fatigue, itchy palms, sensitivity to gluten and other difficult-to-digest foods and sometimes vomiting right after eating them, swollen and tender abdomen, light colored stool, yellowing of the skin especially around the eyes (this comes and goes), xanthalasma cholesterol deposits under my eyes, sometimes trouble concentrating. Some of these symptoms could be attributed to fatty liver disease or other causes, but the doctor felt very strongly that I also had PBC.
Some doctors would say that I don't have PBC and that Ursodiol is unnecessary.
My doctor takes a more proactive approach. He said my bloodwork doesn't show elevated ALP and Bilirubin (which is common with PBC) because we caught it early, not because I don't have PBC.
With my AMA's that high, and my liver in so much trouble, and me feeling so miserable, he saw no advantage in delaying diagnosis until my bile ducts were damaged enough to elevate the ALP reading. He also saw no advantage in requiring a biopsy in order to confirm diagnosis and stage the disease because it is invasive and irritating to an already-inflamed liver. We can always do that later down the road, like after the fatty liver disease is resolved and when my liver is less inflamed. And it doesn't change the treatment - regardless of staging, the only treatment is Ursodiol.
Diagnostic criteria is important, but more important than that is professional judgement. Doctors get no extra points by following the rules 100% by the book. They succeed when their patients experience improved health. So, if you don't fit the criteria, but you show a lot of other signs of disease and need treatment, the doctor can use professional judgement and diagnose the patient in order to move forward with their care. If he was wrong and the Ursodiol did not help, he could have simply advised me to stop taking it. He could even reverse the diagnosis at a later point. He weighted the risks and benefits, then used his judgement. The actual note in my chart (which he prints or emails to me after each appointment) says "No cholestasis based on labs makes positive AMA interesting".
Everyone is different, but I am so glad that the doctor went ahead and started me on Ursodiol. It really worked out for me. I noticed almost immediately that when I take my Ursodiol with my meal, I can digest my food a lot better. No bloating or cramps or vomiting anymore. I can even eat the foods that I used to avoid: bread, meat, pasta in small amounts, etc. In the first week dropped about 3 lbs without trying. I think it was because the inflammation and swelling was reduced.
4 months after diagnosis, all my lab work came back normal.
6 months after diagnosis, my MRI showed great reduction in fatty deposits, but evidence of long term inflammation that still needs to heal.
Most importantly - I feel GOOD. I don't feel sick anymore.
Hi, Thanks for your wonderful and informative answer. I'm also pleased that you are feeling so well now, and that urso has had such a beneficial effect. Your history is fascinating - and such a far cry from dealing with the cash-strapped NHS in GB!! I love the idea of being able to 'fire' my medics ... by now (I'm 60) there are plenty in my past who I would quite like to shoot!! But it certainly sounds like you have found an excellent consultant.
I had the same experience ... eventually ... but, although I respect and admire my current (and former, now retired) GP, I still fume that they did not immediately suggest that I get a second opinion after my initial false diagnosis - especially when they felt so strongly that I did not have PBC. In fact, I came up with the idea of travelling half way across England to see my PBC consultant - this was after seeing him in the PBC Foundation's magazine, and then emailing him privately. Like your consultant, he did not make any pronouncements until he had tested and investigated everything, and he was also the first person, ever, to ask about my own medical history in detail, as well as that of my parents.
I've never had a great deal of illness (and nothing autoimmune) apart from mild endometriosis - although interesting to see that latest research now suggests that there might be an autoimmune link there, after all). Certainly nothing like the problems you describe for yourself. IBS was suggested, and I was tested for coeliac disease too, but that was ruled out once it became obvious that any digestive issues, all disappeared once my Endo was controlled. Nevertheless, neither I nor my consultant are ruling out the possibility that I may get PBC, but so long as the bloods, scans and my general health continue to be good, I'm happy to ignore the AMAs - nb mine are high, but my consultant is in the camp that believes the level doesn't make any difference. I also know that stress was adding hugely to some aspects of how I felt, but that has all evaporated since the change in my diagnosis.
I hope all continues to go well for you, and thanks again for sharing your history. I think we are both examples of the importance in taking responsibility for our own health and becoming our own experts ... as well as being yet two more examples of the many faces of PBC.
Hi there. Ie as wondering for everyone whether or not we really have any notion as to long term side effects to the Urso over many years. Could fatigue and vit level change and other things that are experienced be a result of that even though lucky enough to have Urso work ? I don't know that there will be research to check this out. WE will be the research !! Nice to have this support system
I was never that keen on taking any medications pre-2010 when I was diagnosed with PBC. It took me some time to accept that once I started taking urso (December 2010) that I'd be stuck with it for life (unless something else came on the market for PBC).
I've always seen the urso as a sort of supplement as opposed to a medication. Given ursodeoxycholic acid (urso) is a component present naturally in bile, we are simply adding further to our system to aid for better digestion and it is also said to improve the bile flow. Personally I do not see it as being a problem long-term.
I think that various things can alter over time taking urso as the PBC maybe progresses so other symptons appear. This can probably be said of various other medications for other conditions out there.
I think when it is said perhaps the urso isn't working any longer it could well mean that PBC has progressed not necessarily to some dangerous level (ie cirrhosis) but simply urso cannot be dealt with as efficiently as it seemingly started out from the beginning.
Hi 2bear, I agree with Peridot. I see Urso more as a supplement than a medication. Its just bile salts, like what our liver naturally produces. My symptoms of fatigue and problems with vitamin deficiencies existed before I ever started taking Urso. And since starting Urso, digestion, fatigue, and other symptoms have greatly improved. I have no negative side effects of taking Urso, but others are not so lucky.
Hi Chynablue. What can I say....great results! You are clearly on top of the whole nutrition side of things so hopefully your ongoing disciplined eating approach and exercise regime will get you to where you want....then just the tricky thing of maintaining it all. I hadn't thought much about the Vit D side of things for energy but can clearly see from your post and Peridot's that it's more important than I thought. Luckily I'm in France just now so getting plenty of sunshine - hate to think what I'd be like otherwise!! As ever you provide me with lots of food for thought. Keep it up - you're an ongoing example to us all on what can be achieved when you set your mind to it.
Congratulations on your progress. How do you manage to get all the markers back to normal so fast? What's your treatment plan?
My M2 is elevated (28), my AST is normal and ALT is slightly elevated (36). My doctor did not prescribe any medicine for me. Should I be concerned?
I have gastritis and IBS. I've been using digestive enzyme, probiotic and IBGard to manage it. I tried some OTC Bile acid supplement and it did not help.
Hi Janelng, If you click on my name, it will take you to my profile where I have posts about my journey along the way, trying to manage my health. Everyone's situation is so unique, its hard to say what will work, but maybe you'll see some stuff that might help your situation.
I think diet was the most powerful thing to make improvements in my health, but diet alone was not enough - I needed the help of (good) doctors, medication, supplements, and stress reduction to get it all together. Plus, once I think I've got it all figured out, something else happens that I need to adjust for. So monitoring with regular blood tests and imaging is important too.
IBS, gastritis, diverticulosis, and ulcerative colitis run in my family. Some of my family members have found it helpful to learn about "leaky gut", which has been getting to be a popular topic now. There's a lot of new research showing how important digestive health is and how little we know about how it works.
Keep us updated on what you find, especially if it works!
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