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PBC Foundation
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Underactive thyroid and PBC

I have an underactive thyroid and have just been diagnosed with PBC my B12 levels are low does anyone know if there is a link to these please.

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I have been told that people with PBC can also have thyroid problems as they are both autoimmune diseases but one doesn't always follow the other.

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Thank you, it was a bit of a shock to be told yesterday that I had PBC, I'm still trying to get my head around it.

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Hi Margaret

Just a quick reply as I am at work. I have underactive thyroid and PBC and yes your Vit B12 can be low as can ferritin, folate and Vitamin D. What are your levels? If they are really low then you can get injections. Mine was not under the reference range but at about 218 so I supplement with Jarrow B12 which you let dissolve under the tongue (sublingual). They taste lovely, like cherry.

x

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I take a daily tablet for interactive thyroid. Also one for my low B12 levels..

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Hi Margarret59

I have had underactiv thyroid for year then got PBC 2 years now. My dose for thyroid has been dropping from 100mg to 50mg. Doctor said it's because my liver isnt working. The urosfalk isn't working and I have to wait 6 months and more blood before they will send me to Royal free to get the new medicines as they cannot give it to me. I had fibro scan liver has gone from 5.5 to 7.5 if it goes any further it won't be able to fix itself, trying to see if consultant will bring it nearer.

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Hi Maureen25. Can I just ask you about your fibro scan score of 5.5. Did you have Pbc when your score was this? I have positive mitochondrial antibodies and have been told by two specialists that I have early Pbc but they won’t officially diagnose me or put me on medication because my fibro scan was the same as yours and my liver function bloods were normal. I also have an enlarged liver which they are taking no notice of. It’s all very confusing....Were u diagnosed with a fibroscan score of 5.5?

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I had PBC for 5 months before they gave me the medication as doctor didn't want to give it to me. The consultant gave me the tablets then sent me for the fibro scan I would say I had it a year before scan. 5.5 was with medication.

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Thank you for the response. Were your liver blood tests normal? How did they diagnose you? Sorry for all the questions, I’m just concerned health wise as I have Hashimoto/thyroid disease too and often feel quite unwell. X

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I also have thyroid issues & am on meds recently, though I had nodules & thyroid antibodies 10+ years.

My pbc was diagnosed after following up on fluctuating slightly elevated LFT’s with a biopsy. Am on urso. Recently did a fibroscan which reads 5.5.

Hepatologist says not to worry, thyroid issues are very common in pbc patients. At this point, I am tired of worrying over this stuff & trust my doctors to take care of me. They have not disappointed & I am grateful.

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I’m very glad you have faith in the doctors. I hope you stay positive and continue to do well. Thank you again for your response

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With thyroid issues the endocrinologist has to play with the dosage on your meds to make your TSH in balance. If not, you will either feel too tired or too anxious (fast heartbeat, irritability etc...).

The thing about doctors is hit or miss. Some of them are excellent; some are not caring. You have to find the ones you can work with & listen to your concerns.

You will be fine. But if you have pbc, you should be on urso.

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I’ve been told by two different consultants I have Pbc due to my Mitochondrial/mitochondria M2 antibodies but my liver blood tests have been within range/normal so they won’t officially give me a diagnosis or do a biopsy. My fibro scan was 5.5 so they classed that as normal. My us showed an enlarged liver. “The appearance suggests the liver parenchyma may possibly be coarse in texture” On that bases I asked if I have to wait until things got bad before they would treat me and she said yes. She then wanted to discharge me from the hospital which I explained that I wasn’t happy about and thought the least they could do was keep an eye on me. My faith in doctors is not too high, but I’m also very grateful to the ones that have helped with other issues I’ve had. I understand they have so many people to see but I do feel that I am just a number to many consultants

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I hope you get your answers soon. Are you in the UK or Canada? The process is different in the US but US system is not the best either depending on your insurance & where you live. There are more specialists to choose from if you live in major metropolitan areas. The hospitals compete for patients. They send a survey out after your appointments & you rate them & can add comments to give them feedback.

Also majority of US doctors use a patient portal where all your tests, reports are uploaded so you always have access to them. Additionally, you can send messages to the doctors & they either call you or send you an email to address your concerns.

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I’m in the Uk

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I was not feeling well and doctor did blood test. Someone at the hospital notice something was wrong and did extra test that the doctor didn't ask for and I was told I had PBC.

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