PBC Foundation
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Thyroid

Am curious if anyone on Urso or Ocalvia are having issues with TSH. In June my TSH was little above normal range so Dr increased levothyroxine. Had it checked last Friday because I’ve been so cold & sluggish. It is steadily getting higher which means I’m not getting enough thyroid so he increased again. I do know Ocalvia can interfere with TSH. Wasn’t sure about Urso. I have GI appt tomorrow so will definitely discuss.

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Thyroid issues are another condition that is autoimmune related. Your GI won't be too conversant on this vs an endocrinologist, who specializes in the thyroid. You might want to consult with one. I check in with one annually.

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I have dealt with thyroid since I was 14 when I had to have removed. Have been on thyroid replacement all these years. The last 4-5 yrs we can’t keep it regulated. But this time it has gone completely haywire. Ocalvia info does say it can interfere with TSH. My Internist has treated it for years. The discussion I will have with GI is the obvious issue with Ocalvia.

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Hi,

I had thyroid removed 2010. And for 5.5 years was stable on same level dose of levothyroxine. However, after going on URSO my TSH levels changed drastically and my levothyroxine had to be increased 3 x. ( will be checking it again in January)

So it's hard to believe it's only "coincidence" since the only thing that's changed for me is URSO and PBC. All that being said, at least the TSH level can be monitored and pills can be adjusted... I'm grateful there is a solution., Still it's one more factor that effects us.

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I agree. I’ve flip flopped with dosage increase or decrease since 2010. I actually ended up seeing a endocrinologist about 2 yrs ago. She put me on a dose my Internist had never tried & I stayed normal for about 8 months then it got a little out of whack again. So I’m back with letting Internist toy with it again. But like yourself, mine never had been so far in left field until Ocalvia. I’ll have mine checked Jan 4th. Fun isn’t it, lol! Too many blood levels to deal with. But we’ll survive it all.

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Yes, it's interesting that I had to keep upping my levothyroxine dosage once I started URSO. like I said above for 5 years prior to URSO was on .100mcg. Now I'm at .125. Both Pharmacist and dr say that they find no interaction or notes about URSO effecting levothyroxine efficacy.

So is it just a coincidence that as soon as I started URSO my levothyroxine dosage was inadequate?

Is it that we're not "absorbing" as much or our whole metabolism is just "off".

Anyway- it's the least of my problems since it can be solved by tweaking levothyroxine dosage. But I did want to add to your thread here that I also experienced need to change my levothyroxine dosage once I started URSO.

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I was on 100 mcg levothyroxine until June. Increased to .137, & now .150. I think the PBC med has something to do with it. I find drs hardly ever admit a certain drug is causing an issue. He did mention that with PBC, we can have absorbtion troubles.

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Had thyroid condition a few years before pbc diagnosis so Urso was not a factor in this case.

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If Ocalvia is throwing it this far off, my GI may need to try Urso again but not capsules. I have seen several posts about generic & nongeneric. Which do you take?

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I take the capsules and i find them ok so far i have to take 3 together i take them after breakfast with plenty of water urso capsules

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I take ursofalk thats what my hepatologist prescribed

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Generic capsules via Express Scripts

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What is tsh

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Thyroid Stimulating Hormone.

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Thanks for that never heard of it all these medical termsnew to me

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What is tah

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What is tsh

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The thyroid gland regulates metabolism. I call it our “thermostat”. If you get too much it it makes you hyper=overactive. If not producing enough it’s hypo=underactive. Works in conjunction with pituitary gland. In short, if not enough TSH, pituitary gland kicks in to assist. If too much TSH, pituitary gland backs off. Very important gland. Affects skin, eyes, energy, hot/cold. And can sometimes be thrown off with different meds.

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I was treated with Synthroid for 12 years for my sluggish thyroid before I lost my thyroid to Hashimotos which is another autoimmune disease. This was about twenty years prior to my PBC diagnosis.

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qwillistexas. I do have lots of problems with Thyroid Hashimotos. Cannot seem to get in under control, from hyper to under active. Have no idea if Ursofalk could be contributing to this condition,. Have had the thyroid problem for years before PBC was diagnosed. I just cannot recall that it was so jumpy from the one extreme to the other

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I also didn’t have this extreme highs & lows on my TSH until now. Dr said Ocalvia may contribute to it but feels I just may not be absorbing thyroid hormone. I don’t like it, but what do...

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That is the million dollar question?

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Right🧐😉Internist will just have to tweak it till it does something.

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I have been on synthroid for many years and my TSH was always in normal range. After 9 months on Ursodoil, my TSH jumped to 31.5 (normal range .3-5). Fortunately, 3 months after an increase in synthroid meds I am once again in normal range! It is just amazing that such a tiny little gland can wreak such havoc. So much more energy now — just in time for the “holly-days”!

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Lol! You’re so right. Mine went from 5.6 in June to 13.8 a week ago. Mine doubled ⬇️. Always amazed me the higher your number, the lower the TSH. Well, hope yours continues to act right😊

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My Synthroid prescription was changed for me while I was hospitalized for something else. At home, I always take my thyroid pill at 6 am on an empty stomach. I believe my blood tests were messed up because it was delivered with all of the other meds at 9 am each day. After I was released, I continued taking that same prescription and progressively getting sicker. My doctor had no explanation for how I was feeling. My heart was pounding in my stomach most of the time so I couldn't sleep and I could barely walk. I felt like I was dying and wrote my obituary. I believe everyone thought I was simply getting old. Then one evening I realized that I had all of the symptoms of Hyperthryoidism even though my thryoid was removed years ago. I rushed to the medicine drawer and found the right amount of mcgs by using my prescription combined with part of one of my husband's pills to almost equal my old prescription. (They say in thyroid meds, more is less) I took that dosage the next morning and before noon ALL my symptoms were gone. After nine long months, I finally felt like living! I called the pharmacy and they said I had an unfilled prescription of my old meds still on file. I was back to taking my old prescription and feeling great. But, after a few weeks, I knew I would run out and e-mailed my PCP as to what I had done. I told her I wanted a refill on my old prescription. She was furious and told me to come in to see her immediately. I went in and after I explained to her what had happened, she had nothing to say. I had researched on thyroid meds and a famous doctor was quoted as saying, "In prescribing the thyroid medications, don't go strictly by the blood tests, but how the patient feels." Two years later, and I still feel fine and would never change again! I always say, if you don't look after yourself, no one else will. I hope this helps someone.

Merry Christmas to everyone.

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ya nah...I take thyroid no later than 6:00 am. Ocalvia-12–12:30 after lunch. I’m faithful with my pill times. Normally when they change my dosage they recheck st 3 months. This time it was scheduled Dec 18th. I had been dragging so bad, eyes didn’t feel right, so I called & told nurse I wasn’t waiting till 18th, that something was really off. So sure enough...I had partial thyroidectomy at 14, very overactive. Age 23 the remaining thyroid was overactive. 2nd surgery too risky so I drank radioactive iodine to kill it out. From there, I was not put on thyroid. 4 yrs later I felt like walking death. It was because of no thyroid. It was so low they had me taking .150, 8 per week until back to normal. Took that dose for years. Then it was too much. I get so tired of flip flopping with the dosage but not much else to do.

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I sympathize with you. Thryoid problems can really do a number on you. They told me they would remove the right side, but when I awoke they said all my thyroid was burned up. and had to be removed. From Hashimotos Hypothryoidism. I was probably in my forties. I have always had regular check-ups, but I never asked for a copy of my tests or had any idea how things should be. I try to check everything now and if there is something I don't understand I ask the doctor.

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It’s 32 degrees here. My hubby & I have little trouble with temp in the house, lol! I’m freezing, he’s not. I keep regular labs. They post my results & if I don’t like what I see, I’m on the phone. We have to be on top of it all for our own sake😊

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It's 32 degrees here also and I'm in the same boat. I'm the only one who ever gets chilled and I've been cold all day long. My feet will never thaw out again. lol

On the subject of thyroid, Everyone in this household is on thryoid meds including myself, my husband, our son and two little 10 year old Pomeranians. How weird is that? Dogs have to have thyroid meds and six month check-ups just like humans.

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Oh wow! Never knew dogs had thyroid issues. But, they do have other conditions we have so that makes sense. Poor babies. At least you can relate to how they might feel😊. Well, try to thaw, lol! My feet are like ice so I’m about to try to get my chill off. Stay warm🤗

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Since they've been on thyroid meds their coats are getting to be pretty again. I had no clue and evidently their vet didn't either. Thankfully they were diagnosed by a new vet. He also diagnosed them Congestive Heart Disease and with medications, they are both doing great.

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Aww...so no doubt thyroid affects their hair like it can ours, and everything else. Glad they’re doing better. Poms are precious

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Lovable sweet babies and rottern! Stay warm and take care. I'm for a hot shower to warm up b/4 bed.

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Thank you. You do the same.

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tanjah...I’m so sorry, my phone did autocorrect & misspelled your name😮

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My Smart phone puts words in my mouth!

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Yep...I’ve tried to proof my posts before sending.

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