Why wouldn't it be necessary to see an Immunologist (as well) once diagnosed with PBC?

I've asked my Gastro to refer me to an Immunologist since this is an autoimmune disease and was told it wasn't necessary according to blood work? I would think this would have been the next logical step for further investigation since the problem derives from there. Is it because there is nothing an Immunologist can do for PBC?

7 Replies

  • Hi nataline.I have just seen and immunologist, not refered to by my gastro but by respiratory doctor. I am having trouble with my bronchiectasis. I also have rhuem arthritis and sjogrens, so will be interested to see what he says? Dont see him again till August!

    It doesnt appear a normal route, its mostly to see how the chest problems can be managed.

    Dont worry ,if you have no other auto immune problems I am sure it's fine. Cheers :)

  • Thank-you, and hope all goes well with you in August!

  • This is the first I have heard, I thought that once one had PBC you saw an hepatologist/gastro.

    From what I understand:- 'Immunologists work within clinical and academic settings, as well as in industrial research. Their role often involves characterising and measuring components of the immune system, including cells, antibodies and other proteins. They develop new therapies, treatments and vaccines, looking at how to improve methods for treating different conditions.'

    I take this from a med definition but also to me I couldn't see the point as it is the liver that is affected by the bile ducts once one has been diagnosed with PBC.

    I expect there are guidelines within our NHS (I'm in England) for when a doctor seeks advice from another branch of the clinical tree.

  • I apologize for the confusion, yes, you do see an hepatologist/gastro for PBC.

    In Canada, we have Immunologists who research but also those with a medical degree in this field working in hospitals and medical offices treating patients with autoimmune disorders.

    In autoimmune diseases, the immune system attacks the body’s own tissues. In PBC, the immune system attacks the bile ducts and continues to do so, regardless, of Urso.

    I wanted to be referred to an Immunologist to, firstly, rule out the possibility of having any other autoimmune disease as it can affect many parts of the body. He can diagnose this through a series of blood tests relating to the immune system.

    And, secondly, I wanted to know more about the benefits and side effects of taking immune suppressants along with Urso.

    I find it difficult to wrap my head around knowing the immune system cannot be stopped attacking the bile ducts, however, slow it may be.

  • Hello nataline.

    Think the easiest way to remember what PBC is is to say that we now produce our own antibodies, the anti-mitochondria antibodies (AMA) that is which are the ones that are attacking the bile ducts within the liver. As you say it is all part of the immune system and blood tests that you refer to are other such antibodies, ie there is the ANA which is anti-nuclear antibodies that cause someone to have auto-immune Hepatitis (AIH).

    I think there is some treatment in tablet form that combines immune suppressants and urso but at present I can't recall where I read about it and certain there is some ongoing clinical experiment that is currently researching this.

  • PS I think to conclude, even though urso improves bile flow to attempt to slow down progression of PBC I think it is a fair comment to state that what we really all need is something that will eradicate the antibodies that we produce in PBC.

    As another point I have been convinced since I was diagnosed with PBC Dec 2010 the reason that we can feel fatigued with PBC is due to the fact that mitochondria cells are knows as energy cells and to me it figures if antibodies are attacking them, perhaps that is where tiredness and fatigue and lack of energy comes in.

  • Hi Peridot,

    Thanks, for your insight and I agree.

    What you say about antibodies attacking mitochondria cells, makes a lot of sense and probably a fact.

    Also, maybe, PBC is not totally to blame for fatigue I want to rule out other possible causes (anemia, renal impairment, thyroid disease) so that I know for sure PBC is the only culprit. In doing so, maybe, the fatigue can be cut down to half.

    In researching autoimmune disorders, I came across Hashimoto's thyroiditis whose major symptom is fatigue. The symptoms of Hashimoto's thyroiditis are similar to those of hypothyroidism (underactive thyroid) in general, which are often subtle. They are not specific (which means they can mimic the symptoms of many other conditions).

    Hashimoto’s disease is an autoimmune disease that affects the thyroid. The thyroid makes hormones called T3 and T4 that regulate how the body uses energy. Thyroid hormone levels are controlled by the pituitary, which is a pea-sized gland in the brain. It makes thyroid stimulating hormone (TSH), which triggers the thyroid to make thyroid hormone.

    With Hashimoto’s disease, the immune system makes antibodies that damage thyroid cells and interfere with their ability to make thyroid hormone. Over time, thyroid damage can cause thyroid hormone levels to be too low. This is called an underactive thyroid or hypothyroidism. An underactive thyroid causes every function of the body to slow down, such as heart rate, brain function, and the rate your body turns food into energy. Hashimoto’s disease is the most common cause of an underactive thyroid. It is closely related to Graves’ disease, another autoimmune disease affecting the thyroid.

    Doctors test your thyroid function to help detect Hashimoto's disease. Treatment of Hashimoto's disease with thyroid hormone replacement usually is simple and effective.

    It's best for peace of mind, I will ensure I am referred to an endocrinologist to rule

    this out.

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