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PBC Foundation
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Thyroid

Thyroid

Thyroid test came back all jacked up. I understand Ocaliva can have abnormal effect on levels, so be it. Do those of you on Urso have the same problem? So sick of it...

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Gwillistexas,

Hello pretty lady,

I've never had my thyroid checked. I'm going to ask about it. I have labs Thursday. How are you feeling right now?

Stella ❤

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I feel good. Have dealt with thyroid for many years, long before PBC. It just gets so frustrating. Last month he increased my dose & I knew it was too much and now he has to lower it. I just wanted to gripe, lol!

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Gotcha! ❤ Great news that your feeling good. You look great! 👍

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Tks! Love how these photos chop your head off, lol! Are you doing ok?

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I was thinking the same thing. You look GREAT!

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Thanks Bobbie☕️😊

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Have be great day!! 😄☕

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I’m gonna try. Hope yours is nice🦋🤗 later

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Mine is fine. Numbers went up ursol now 1000 per day. Gotta laugh.

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Ktltel, I can always tell when it’s off. Thyroid is weird, if TSH is high they raise the dose. If it’s low they lower it. If TSH is too low t4 kicks in. Pituitary gland is the back up. If one is messed up the pituitary kicks in until it can balance. Just praying this autoimmune isn’t going to hit my pituitary gland. I’ll be retested in a month.

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I'm OK. Slight RUQP, some dizziness, dry eyes and mouth. My Alk-phos isn't going down enough like they hoped although it's never been over 200. I see my hepatologist late April for my one year appt. Trying to lose weight in order to have a Fibroscan. Basically I can deal with this PBC for now. No itch, only slight fatigue. I can't complain really. We will see what my labs say. I'll get the results by Monday.

Stella ❤

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I will pray your labs are good. I get a little URQ ache now & then but I try not worry too much. No other symptoms. I know your anxious to have fibroscan. Wish I could have another one to see if Ocaliva is doing its job. Not due till September. Let us know when you get your results on labs. 🦋

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I had my thyroid checked it was fine

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That’s great. I’ve had thyroid problems since I was 14 but only in the last 4 -5 years has it been a struggle to stay balanced. Maybe that’s when autoimmune was preparing to show its ugly face😧😊

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Hi gwillistexas , yeh i have had thyroid problems well before pbc . I am on Urso and my thyroid has been good for many years now just the odd hiccup now and again . But saying that i have noticed symptoms happening related to thyroid where my hair has all of a sudden started to fall out again so i think i need my thyroid checked . So i guess i'll be back to docs soon to get blood test done. your looking well in your pic . take care shaza

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G’morning. Not so much my hair coming out but if I’m getting too much thyroid my eyes show it. My eye dr calls it the thyroid stare. In 2009 I remember taking my dad to his neurologist & his Dr asked if I have thyroid problems. I said yes & he told me he thought I needdd to have it checked. Of course I wasn’t keeping up with it as I had not had any issues. So sure enough it was out of whack& has pretty much stayed up & down. Fun fun🤣

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And, thank you. I had my hair chopped off for summer. Gives me a spunky attitude 😅 have a great day!

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Looking good gwills! So sorry about your thyroid, that is frustrating. Hope this dose adjustment does the trick for you!

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Ottley3...Tks! Wish I could be positive about thyroid but something is really messing with my levels. I think it’s something to do with Ocaliva. Drug info says it has a tendency to alter levels. 😊

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Ugh oh no. That is frustrating and sounds like a very difficult medical dance. I look forward to hearing what your doctor says. Keep us posted.

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Nurse called today to tell me they will recheck in 4 weeks. I told her maybe we could consider changing my med to something else. I take levothyroxine. We shall see😊

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I've always had hypothyroidism since before I was diagnosed with PBC. It's another one of those lovely autoimmune issues. I've always been on synthroid once daily. With some adjustments here or there.

Stay strong❣️

Shannon

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I was hyper at age 14. Partial removal. Age 23 the remaining gland became overactive & took a dose of radioactive iodine. (2nd surgery to risky on vocal chords. ) I doubt it was autoimmune at that age & that many years ago. But it’s honary now, lol! Tks & you take care. Good to see you here🤗

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I've grown to realize that's one reason I couldn't keep weight on. Recently my numbers became elevated which I put on close to 30lbs almost over night. I weigh now, what I weighed when I had my second daughter. Asked my family doc to check my thyroid levels & "poof" that's why I have put on the weight. So we increased my thyroid medication. I've lost a few pounds since the dosage change. I don't feel that it is due to the Ocaliva, for me anyways. I think my weight gain would have started a bit closer to when I started talking the Ocaliva. I've been taking it for close to a year now.

I still try to keep up with everyone & read the forum. I just didn't post much anymore. Prayers always of course 🙏

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I lose a couple lbs every time I’m getting too much. Then I can’t gain it back. Always had a fast metabolism on top of everything else. I just feel Ocaliva is altering my thyroid levels. I take thyroid every morning 5:30-6:00. Ocaliva -12-12:30 & vitamins at bedtime. So I know I’m not taking any of it to close together. It will work out somehow. Tks for replying. Take care🦋

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I learned the hard way to properly take thyroid meds. I always took them with a glass of water but was never told that I couldn't eat or have anything for at least a hour after. This way is soaks in. Everything else I take at the same time. Then I have my bedtime meds.

But the way, that is a very beautiful pic. Always nice to be able to place a face with the name😉 take care. Im sure I'll pop in from time to time.

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Thank you Shulsey ☺️ yes, please do. We miss you here💞

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Fabulous photo gwillistexas hope you get your levels sorted.

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Thank you. I hope so too😊

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I was diagnosed with under active thyroid in 2000, went onto Levothyroxine. For years I would only be offered a blood test to check levels if I went to the Doc for something else. 5 years ago I was diagnosed with PBC and went onto Urso. Since then my thyroid function tests have gone from under normal range, to over normal range several times, as my Doc changes me from 75-100-125 Levo!!! Fed up with this, and having developed migraines in the last year, I have asked for a referral to NHS Endocrinology. Hopefully they can concur with the Gastroenterologist and finally get my meds and blood test results on track! (not sure I hold out much hope though?)

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It is so frustrating to say the least. My dosing goes from 112 to 237 to 125 & now we’re back to 100. Sick of it.

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Few years ago I got tired of my Internist jumping from one dose to another. I started seeing an endocrinologist. She gave me .88 & it kept me in balance for 6 months or more, then it messed up again. And that was before I was diagnosed with PBC. So with all the labs my Internist has to do now, in conjunction with my GI, I just let Internist treat thyroid again.

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Just a thought. If my thyroid meds dose needs changing I always insist on doing it slowly otherwise I get a rebound reaction and then no one knows where I am. Yoyo dosage makes me feel sicker.

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I went from 137 (I knew was too much), down to 125. This time he skipped 112 & gave me 100. I’m just screwed up😅 I think sometimes he doesn’t know what to do with me. I’m a difficult patient☺️

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I had a phase a couple of years ago where my tsh went to 15.7 and my doc wanted to change from 100 to 200. I said "fine, but can we do it slowly?" So I started with 125. Next blood test a month later (on 125) my tsh was 0.9. Far to low. So back to original dose, and been there ever since.

It's a very delicate balance especially with an ailing thyroid. Needs treating gently.

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I guess it’s a little more difficult when you don’t have a gland which is my case. We’ll see what happens. Tks!😊

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Yes I should think it is difficult. Very frustrating. I didn't know it could still be up and down once the thyroid was no longer functional.

I remember the day when my doc told me I was underactive. "No problem" she said, "a little pill once a day and you will be back to normal in no time"

They don't know the half of it do they? LOL 😊

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They don’t know shit sometimes. 🤣. Sometimes they’re like blind men in the dark. Well, I think it’s harder with no gland. Not sure if my parathyroid is doing its job. But I feel really good most of the time. 😎 I told my husband if I didn’t have the little urq ache sometimes I’d really think I don’t have PBC. I feel too good. But I know that can change. I’ll take it while I have it.

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