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PBC Foundation
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Hypothyroidism

Good morning all. I’m doing a little research here. How many of you with the diagnosis of PBC also have low thyroid? My fatigue is off the wall right now, and I also have some of the other symptoms of hypothyroid ; dry skin, brittle nails, and losing clumps of hair,as well as, the debilitating fatigue.

Another question if you do have hypothyroidism does taking the synthyroid help with the fatigue? My TSH, which is the test for thyroid, is only slightly elevated so the gastroenterologist says it’s not high enough for the diagnosis, but I’m still looking for that rainbow.😁🙏

Thanks everyone. I’m not on URSO because I’m allergic to it so fighting this disease all on my own bodies defences.

And Happy New Year all

J

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Hello,

I haven't been diagnosed with any thyroid issues but, I do have brittle nails, dry hair, and dry skin. No fatigue that bad. Only slight fatigue. I'm a non responder to Urso but still on it. Waiting for insurance to ok Ocaliva. Why can't you get on Ocaliva instead of nothing at all? Or, getting in on a clinical trial?

Stella❤

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One issue for Ocaliva is cost, but also the manufacturer has not recommended it for me because I have a second problem in that I have liver stones

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Hi I have hashimotos disease. I have had this since around age 21. I have had nodules on my thyroid since after the birth of my son who is now 29 years of age. It just got brushed aside, wzit and see is what I was told in 1989. In January 2012 I finally got diagnosis of hashimotos..yes you heard correctly...2012 January and in march 2012 I was rushed in to hospital with jaundice.....diagnosed AIH PBC overlap via bloods and liver biopsy. I still believe that if treatment had been given for my thyroid condition, which my mum also had, then this may not have happened. There is a direct link between AIH and hashimotos disease. Lately I am tired and am being treated for vitamin D deficiency...yes it's common in liver disease, but also hashimotos. I still have no treatment for hashimotos, its a wait and see scenario...

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I have dealt with thyroid since early 20’s. I’m 64. When it’s hypo it can drain you. Are taking thyroid supplement?

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Since my TSH is only marginally elevated the GI doc thought it did not need treatment even though it went from 1.7 to 4.27 in just over a year. I’m concerned as I have a lot of the symptoms and wondered if , in particular, the fatigue may be less if I had thyroid medication. I’m going to see my family doctor for his opinion

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My experience has been if tsh stay in the normal range, I don’t get that sluggish feeling. I can sometimes tell it’s messed up by the way my eyes feel. Hard to describe. My dr feels it’s better to have a little too much than not enough. Is yours ever hyper?

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No. My TSH has always been in normal range. Having said that I’ve only had it checked a few times and that was because of my family history. My mother, and three brothers have hypothyroidism. This is the first time that TSH has been elevated. But the fatigue is unreal.

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Hmmm...I don’t know. I hope you can get to the bottom of the fatigue & feel better. 🙏🏻😊

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Took me a long time to understand that if the tsh is too low, we’re getting too much. It it’s high, we’re not getting enough. I don’t have a thyroid gland so it’s fun trying to keep it balanced, especially now with Ocaliva.

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You might want to get another opinion from an endocrinologist. They specialize in thyroid issues. Both my hepatologist & pcp told me to follow up with the endocrinologist when my numbers went off normal range.

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I am currently working with my endocrinologist on stablizing my levels. My TSH has always been normal until recently. I have had a multinodular goiter for the past 12 years. But my thyroid functions were normal. So there was nothing to do except annual check up with endocrinologist, which included TSH labs, sonograms & biopsies when warranted.

Recently thyroid went hyper on me & doctor put me on antithyroid meds which after 3 months made it very hypo. So then doctor 1/2 the dosage, but the TSH barely budged. So doctor took me off meds completely. I had it retested last week & it is still hypo, but only slightly.

Dr is hoping that it will go back to middle normal range at the next check. She did asked if I feel normal, not tired. I can’t really tell. I am often tired because I sometimes get insomnia.

I update my hepatologist & pcp on this as well because I feel like they all should know this when caring for me.

Synthyroid can balance out your TSH to reach an optimal level so you feel normal & not tired if you are hypo.

Hope this helps.

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I have Hashimoto's and take Tirosint for it (a T4 med like Synthroid but with less/cleaner inactive ingredients). I feel best when my TSH is around 1.0. I don't think I could function if my TSH was over 4, like yours is. I believe the old range for TSH topped out at 4.5, but at least in the U.S. it is generally recognized that a TSH over 2.0 might need treatment. I'd seek a second opinion.

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Thank you. I really appreciate this information. I’m really fatigued. To the point of thinking I need to move to somewhere that can assist me with meals etc.

Having more information on TSH level is extremely helpful

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My tsh was 15 when I was first diagnosed.

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Wow. I can not imagine how that must have made you feel.

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It's the least of my problems tbh, as I'm very poorly with scleroderma. The hypothyroidism is well controlled with thyroxine.

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Yes, I have an under active thyroid and I am taking 100mg of levothyroxine. Also taking 1000mg of Urso. Apart from dreadful stomach issues. All is well and the itching has virtually stopped.

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Thanks for the info 😁

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Hi yes thyroid. Hashimoto.

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Good morning folks....I find it interesting that only TSH is being looked at. That test is relatively new and it is unfortunate as that is only part of the picture. What is going on with your FreeT3/T4? For me, T4 medication (synthroid) is not enough. I needed a T3 compliment. I wrote awhile back as to how baffled I was with my thyroid levels. I was finally put back onto Nature-Thyroid (aT4.T3 combo) and literally within days I had energy. I first noticed when i wasn't reaching for caffeine in the afternoon. As of today, i am not even having a morning coffee. And here's a news flash that was NEVER told to me. Caffeine in the morning within an hour of taking thyroid meds can cause malabsorption of the medication because it stimulates the intestines and we wash the meds. out in our bodily waste.Please do go see an Endocrinologist or a good Naturopathic doctor. Be well

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I only mentioned TSH because that is the test that flags thyroid issues. My labs have included T3/T4 Free & thyroid antibodies. I don’t really understand the details of all of that & just trust that my endocrinologist will do what is needed to stablize my numbers.

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I trusted my endo. also and I ended up with really messed up symptoms. On to the next one.

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What didn’t your endo do for you? My pcp was very thorough & flag the thyroid stuff. I wouldn’t know if it weren’t for him. My hepatologist is also thorough, he ran tsh labs on me though he had no real reason to & that was when my thyroid was hyper. My endo responds to my every question almost immediately. So I trust them. So if you can’t trust your doctors, you must find doctors that you can trust.

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Long story, but when I asked her if how I felt mattered and she refused to increase my T3 when i was clearly hypo and depressed, I knew it was time to seek help elsewhere. As my new doctor said, looking at your labs, she had you one foot in the grave. Not all doctors are smart

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Sorry about your experience. Yes...some doctors are not good. It is hit or miss sometimes. You just have to be your own advocate sometimes.

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G’morning. Very interesting article on this (caffeine). In the the American Thyroid Assoc website. But it also mentions cholestryamine & other binding resins. I think this article speaks mainly of the affect on T4. Good read 😊

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Thanks. Yes I did not have a T3 or T4 done. Yet told not hypothyroidism. Having seen my Mom suffer until she got a diagnosis and on medication, I’m frustrated. Hate when doctors do not listen to the patient.

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I get it...when they go by the numbers and not my symptoms, I feel totally negated. Hope you get the help you need

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I really appreciate your info on coffee. I start drinking it when I get up at 5:00. Take levothyroxine 5:30-6:00. And I probably have 3 more cups before I start on water. Wonder if this might be part of my thyroid inconsistencies. I’ll be sure & discuss with my dr. 😊

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I think you need to take thryoid meds on an empty stomach.

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I do. After thyroid st 5:30-6:00 I don’t eat until 7:30

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I think you are fine!

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I’ve never been able to tolerate water on empty stomach especially first thing in the morning

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I have a cup of coffee, followed by a cup of hot water with lemon. Hot water with lemon is supposedly really good for you.

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All my water has fresh lemon. I still believe OCA has something to do with my thyroid.

May decrease thyroxine free & may increase tsh.

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Thyroid stuff is very complicated.

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True it is. 😊

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Hi Jean,

I have hypothyroidism. Because of my symptoms, my GP suspected I had low thyroid. It was when testing for that that my liver functions came up all wrong. I take synthyroid

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Hi, I am diagnosed hypothyroidism and pbc and take levothyroxine for thyroid and Urso for pbc. Both cause fatigue but I suffered from fatigue long before being diagnosed with pbc which I always attributed to my under active thyroid even though I was taking medication for it. Was diagnosed with pbc in 2017 and hypothyroidism in approx 2000.

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I have PBC and under active thyroid. On synthroid and Urso. Had thyroid problem befor my diagnosis of PBC and my number was over 11 when I started taking synthroid. I was tired, had dry skin. Not tired any my dry skin is better. Hair has definitely thinned but I had very thick hair to begin with so now my hair is like most people! So the hair change could be from Urso or increased dose of synthroid. Happened at the same time so no way of knowing.

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Having too little or too much thyroid can cause hair loss too. I always thought that if hyper but it goes both ways 😊

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My hair loss is the least of it. I take synthroid on an empty stomach with a glass of water either hot or cold. I wait an hour and then have coffee.

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I also have low thyroid, or I did. I take Synthroid and as long as I take it 30mins before eating every morning I feel like a new person. My thyroid as at 15 and should have been below 4 so I know exactly what you mean about having zero energy. I was also very depressed and gained almost 6 lbs even though I eat very little due to chronic pancreatitis. Yes! Take your synthroid.

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I have pbc and have hoshimoto thyroiditis which is a disease of the thyroid. They are watching mine closely because they have found the trouble but it isn't so far out of normal limits for me to be on medication just yet.

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What test shows that you have Hashimoto?

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Jeanb47...from what I found they can do these tests:

Autoantibodies, TSH, free T4, free T3 & total T3. Thyroid antibodies & thyroid panel.

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Hello I have an underactive thyroid as well as PBC and coeliac disease. I take 125 mg levothyroxine and 750 mg urso daily. I have some fatigue but I am 71 so have no idea whether this is due to age, PBC or sluggish thyroid or a combination. Hope this helps. 😊😊

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I have underactive thyroid which is all over the place since last year. I am on medicine. Docs are try to stable it.

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Hypothyroid and aih

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Update. I had a bad weekend. Started to get light headed and felt heart arrhythmia. Apparently I was having periods where I was having a “ run of PVCs .”

Anyway, went to family doctor explained all my symptoms and that hypothyroidism is in my family and that PBC and hypothyroidism seems to be related. He said my TSH was only a few points above normal which was NOT indicative of hypothyroidism. In Canada, the labs do not do T3 or T4 unless your TSH is in a certain range. He did agree however to repeat the TSH and do iron and Vit B12 levels. Going to get blood work done this week and see results.

I was a bit upset about the fact that TSH level controls further investigation. Not all people fit the same mould I’m thinking. Maybe I’m one that has symptoms at a lower level?

Anyways, thought I’d update you all.

Thanks for all the replies and information.

J

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Sorry about what you are going through. Hope your doctors can help you. Be well soon.

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I was taking synthroid before the PBC diagnosis (2016). In 2017 I was very sluggish and my thyroid levels had shot up to 34 — it should be 4! My dosage was adjusted and I feel like a new woman. PBC does mess with your thyroid.

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