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I am tired most of the time, but sometimes when I do something energetic like walking up a lot of stairs or sweeping the floor, I get really exhausted and my body feels like I just ran an a mile. I was usually very active and exercise most days until two months ago and I started feeling bad and my bloodwork came back with high liver enzymes and with AMA,s. I just had a biopsy and haven't got the results back.
I was just wondering if anyone else feels like this.
Hi
Yes, I experience the same walking up stairs but it seems to come and go. I do not suffer from daily fatigue though. I have PBC , Sjogrens, SICCA and Auto Immune Thyroid. Make sure a Rheumatlogist checks your blood work for other autoimmune conditions as with one, there are other conditions too. I am female, 57, and have had high liver enzymes for over 16 years. Been on Ursotan for 3 years and my liver enzymes have been normal and stable. I was diagnosed early, Stage 1.
Does anyone else suffer from PBC that lives in Johannesburg? I would like to make contact with someone that has this condition.
Regards
Sandy-South Africa
Thanks Sandy I will have him check for other diseases I may have. I have figured out PBC usually is paired with other illnesses.
SandyTaylor. Browsing through the old emails and was wondering how your health is. I was recently admitted to Hospital with irregular heartbeat, high blood pressure and fatigue. After seeing Cardiologist he told me that my thyroid is attacking my heart now., We cannot seem to get thyroid under control i.e. underactive or hyper. and that puts a lot of strain on my heart. Please let me know who you see now at Donald Gordon since your Specialist retired liver encymes are looking better than in 8 years. Finally Medical Aid agreed Ursofalk to pay as Chronic but not Ursotan, . My body battled to accept the Ursofalk. The itch was worse than ever. But I think after three months of using it it is bearable, the itch. All the best.
Rockie, I have dealt with thyroid since I was 14. Partial thyroidectomy. Age 23 the remaining gland had to be killed with radioactive iodine. As you have probably read, the thyroid controls many functions in our body. Never heard of it attacking the heart but I know for a fact if it is left untreated, hypo or hyper, it can do bad things to the heart. 😊
Thank you for your reply. I am just tired of these autoimmume diseases. My Vit D levels are up to standard as I do take supplements.
I understand. It’s tough. We have to hang in there though.
gwillistexas. I have been on Eltroxin for many years and had ultrasound last year.
I think it's quite common. When you get your results ask for your vitamin D checked it doesn't stop it completely but it really has helped me.
Used to get this a little when I was on steroids. Also when iron is low. Quite common.
I need to get my blood checked again, last month my iron was alert high,
Then three weeks later it was almost normal. I didn't take anything to get it down. Maybe it went to low.
Yes I would be interested in any replies, my ferritin levels are high but nobody seems to be bothered except me! Kandiepat
I have the same kind of symptoms. And that makes me feel massively unfit.
My bloid pressure is very low, 90/50 and that alone makes the heart race. Also am a bit anemic. You'd benefit from a good overhaul at your gp, blood pressure, having your iron, potassium and vitamin d levels checked. At least those. Hope you'll start feeling better soon!
Hello ,
This sounds exactly like me.It's so frustrating and hard to explain to others.
Jane
Yes it's very hard to explain. Also just the fatigue itself is hard to explain. I guess I have never had fatigue before because it feels more than just being tired.
Thanks I will request a overall bloodwork be done!
Terhen.Thanks for replying. My bloods were done just two weeks before this happened. Blood pressure normally high, for that I take a pill. Vit D and K. Thyroid is really playing games with me Underactive and next hyper. Hashimotos. Apparently that is causing the heart rhythm to be so abnormal
If this is new for you I would suggest you have your GP check it out.
I recently started getting palpitations and a racing heart and been referred to wear a heart monitor for 24 hours to check out what's going on although I suspect it is somewhat stress related.
What did the doctor say after wearing the heart monitor?
I have an appointment with cardiology on Wednesday to get the results.
Did you get any advice on your racing heart?
No not yet
Cardiologist said it would be of no use giving me a pill to slow the heart rhythm as the cause of it is the thyroid being up and down all the time
candy 12 I was at Cardiologist yesterday. He said because of the autoimmune thyroid and PBC it is the thyroid attacking the heart. It is so frustrating to have a condition that not many doctors can really tell you they know anything about it. I have been turned down by quite a few who admitted they do not know this PBC. Now he suggested Rheumatologist . I cant just pay for drs and get not the right answers
Sounds like you do need a good specialist for your thyroid to get it stabilised.
I did all the tests at cardiology and everything was okay even though he said I have ectopic beats its nothing wrong with the heart and nothing to worry about. So been discharged from his clinic now.
I saw a rheumatologist recently for further immune testing after gastro thought it may be something else going on but, all was clear thankfully .
candy 12. Thank you so much for your good advice. So do you think I should not see rheumatologist and rather good thyroid specialist, but also one who specialises in autoimmune diseases. I really cannot see how rheumatologist can help,as the cardiologist suggested, as I also know I have this thyroid with 5 nodules and Hashimotos. If I could do bloods every day, they will get a different count everytime. The hardest thing now is, the Hospital refuses to pay for 3.5 days in hospital. I did not check myself into hospital, was too sick, could not even walk into hospital and fainted several times with very high blood pressure, which came down as soon as I was put on oxygen. Now they need letters of motivation.
In the U.K. I was sent to a rheumatologist for immune testing. I know if anything further had been found I would be referred to the relevant specialist.
However, Iam not sure in SA how it works for you. Are you able to speak with the cardiologist or you own doctors and ask why he suggested rheumatology.
Yes I did ask him.He said Rheumatologists normally deal with patients with autoimmune diseases.Another dead end. I belong to Medical Aid and pay a premium per month but by this time of the year all monies are depleted. Luckily I am not that young anymore, nearly 77, and can adjust my lifestyle to be like a lazy old woman. Do not like to be like this, but it seems to be my only option. Maybe in another 100 years drs will be more clued up with PBC and all the other autoimmune diseases. Thanks for caring.
Yes. I have low blood pressure too.
I have had the fatigue at times where I can't even get out of bed. I take vit d & iron as well because those were low. Fatigue goes hand in hand with PBC!
Ask for your bloods to include tests for anaemia. I get the same when my ferritin levels are very low. Good luck!
Fatigue 
Combination of sand like substance as well as grainy salt like substance underneath top layer of skin. Anyone else experience with PBC?
Fatigue
