PBC - primary biliary cirrhosis: Does anyone have... - Thyroid UK

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PBC - primary biliary cirrhosis

Meeshy1234 profile image
17 Replies

Does anyone have this due to underactive thyroid ,Any advice ? thanks

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Meeshy1234 profile image
Meeshy1234
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SlowDragon profile image
SlowDragonAdministrator

Some links re the two conditions

pubmed.ncbi.nlm.nih.gov/662...

pubmed.ncbi.nlm.nih.gov/277...

onlinelibrary.wiley.com/doi...

SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you currently taking

What are your most recent thyroid and vitamin results and ranges

Meeshy1234 profile image
Meeshy1234 in reply to SlowDragon

Hi ,, I’m currently on 250mg Levo, vit d, b12, folic acid, my last results shows vits ok, but T3, t4 all low, Ive managed to see an endo who is going to trial me on T3, but I’ve also had raised levels in my liver, just had MRI ( awaiting results but show lesions ) I was looking at PBC, as this is also caused by underactive thyroid and is autoimmune, I have quite a few symptoms of it too, looks like it might be something else to add to list 😩

SlowDragon profile image
SlowDragonAdministrator in reply to Meeshy1234

What are your actual Ft4 and Ft3 results and ranges

Do you always get same brand of levothyroxine

Always do all thyroid tests as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test ?

Please add actual vitamin results and ranges too

Meeshy1234 profile image
Meeshy1234 in reply to SlowDragon

Hi tests are done as you describe, I only have these results from December, had more taken yesterday ,, thanks

Test results
SlowDragon profile image
SlowDragonAdministrator in reply to Meeshy1234

How much levothyroxine were you taking then?

Presumably you had 25mcg dose increase in levothyroxine after these results

Results show under medicated

Likely low vitamin D, folate, ferritin and B12

Meeshy1234 profile image
Meeshy1234 in reply to SlowDragon

I have been tested for gluten and lactose, all fine, I have been in this dose of 250 for approx 3 years and have been fighting for hel since as still symptomatic, endo is currently starting me on T3 ,

SlowDragon profile image
SlowDragonAdministrator in reply to Meeshy1234

Test results show extremely low Ft4 therefore on inadequate dose or not absorbing dose

It doesn’t show poor conversion of levothyroxine

If results showed Poor conversion of levothyroxine - you would have high Ft4 and low Ft3

Do you always take levothyroxine with no other medications or supplements within 4 hours of levothyroxine

Iron, calcium, magnesium, vitamin D or PPI ....all need to be four hours away from levothyroxine

So guidelines on 250mcg levothyroxine if looking at purely dose by weight

That’s dose for someone who weighs approximately 156 kilo ( 24 and half stone)

thecalculatorsite.com/conve...

If you weigh lot less than this, it suggests poor absorption of levothyroxine

There’s no test for lactose intolerance you just have to try it

Similarly there’s only coeliac test for gluten

Only 5% of Hashimoto’s patients are coeliac

But further 80% of Hashimoto’s patients are gluten intolerant. Again the ONLY way to know if that includes you is to try, absolutely strictly gluten free diet for minimum 2-3 months

SlowDragon profile image
SlowDragonAdministrator in reply to Meeshy1234

Do you always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

Are you on absolutely strictly gluten free diet?

Roughly how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is 1.6mcg per kilo of your weight

If the 250mcg dose is lot higher than this, it suggests poor gut function, malabsorption

academic.oup.com/edrv/artic...

Have you considered dairy intolerance

When dairy intolerant it often increase dose levothyroxine required

Dairy intolerance is very common with Hashimoto's

ncbi.nlm.nih.gov/pubmed/240...

Lactose intolerance was diagnosed in 75.9 % of the patients with HT

read.qxmd.com/read/24796930...

These findings show that lactose intolerance significantly increased the need for oral T4 in hypothyroid patients.

If lactose intolerant you would need lactose free levothyroxine

Teva, Aristo or Glenmark are lactose free tablets

Liquid levothyroxine often gives better absorption

So endocrinologist will often try this first before considering adding T3

SlowDragon profile image
SlowDragonAdministrator in reply to Meeshy1234

When adequately treated you would expect results to look something like this

TSH 0.8

Ft4 19

Ft3 5.4

Vallillyann1 profile image
Vallillyann1

Thank you for raising this. I am currently under investigation for blocked common bile duct awaiting CT scan following ultrasound. The ultrasound also fatty liver and my bloods were at high end of range.

Meeshy1234 profile image
Meeshy1234 in reply to Vallillyann1

Same here, waiting for results before have been investigating and it can be down to thyroid also 😩

Zannadoo profile image
Zannadoo

I'm being investigated regarding fatty liver and they now want more blood's although my pre one's were OK due to my scan showing fatty liver. Is there a connection with levo or hasimos or both. I have been on ndt for a few years now but I was on levo 24 years until I found out about ndt. My thyroid gland has been destroyed by my body and I have heard it can happen with the liver be grateful if anyone knows if this is connected

Meeshy1234 profile image
Meeshy1234 in reply to Zannadoo

Same as me, but it looks like it can be linked with thyroid,, this is from the NHS website

Nhs
Zannadoo profile image
Zannadoo in reply to Meeshy1234

Thanks I thought it might be but gp said I'm dealing with the liver issue not the thyroid when I said I thought it was connected. Well I will have to wait for my nxt lot of blood's and see what they say never ending for us is it

eachpeach profile image
eachpeach

Sorry to hear that. I have PSC, which is similar to PBC, although obviously not the same. I also have Graves' and was previously diagnosed with Hashimoto's too. PBC is also an autoimmune liver disease, like PSC. There's a UK support group for PBC pbcfoundation.org.uk. I find the PSC group an invaluable source of information and support. I think patients may be prescribed the same drug (ursodeoxycholic acid) to treat it but you can find out more on the above website I'm sure. You will need a referral to a liver specialist or a gastroenterologist who also deals with liver disease.

veryland profile image
veryland

Was there a blood test that showed you have this OR how did they determine that you have this?

Just wondering, I am hypo and my Bilirubin blood test is always a little over the top of the range.

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