Synthroid levels and Urso

[EileenUSA]

Hi,

My first post here. What a fantastic community this is and an important resource for us with PBC. I was dx'd with PBC at the end of 2015. Been on 600mg Urso. Here's my question- has anyone else had problems with Thyroid levels (TSH test numbers) changing dramatically after being on Urso?

I had total thyroidectomy in 2010 and my TSH blood work had been same for 5 years. I never had to change Synthroid dosage. and then after 6 months on Urso I've had to increase dosage 3 times. GP says she doesn't find any interaction between Urso and Synthroid. Anyone else experience this?

And I'm truly grateful for finding this forum- a real lifeline.

[butterflyEi]

Hi EileenUSA

I have not had any changes. I wonder if you emailed the PBC Foundation they may be able to get an answer for you from one of their medical advisers.

I also find this a great forum with lovely people, we are blessed to have it.

best wishes

[PBCRobert Partner]

Hi, Eileen.

Welcome.

I am wondering a couple of things:

1) why only 600mg of Urso?

2) What is the driving force for the increase in thyroid meds?

Yours,

Robert.

[Belliver]

Hi EileenUSA, & Easter greetings! What an interesting post-- I'm on Synthroid too, but still have thyroid and I'm on a lot more Urso than you . Ususally urso is dosed according to your weight, specifically 13-15mg/kg/day. I take 1/2 daily dose in the morning & other 1/2 in evening (with food) , I try to take Synthroid 1st thing in a.m. at least 30 min before breakfast. Since I'm also supposed to take calcium as well sometimes it's hard to space the meds since the calcium will interfere with the absorption of the urso & Synthroid-- have to admit sometimes miss the calcium pills due to this fact. Please make sure your thyroid meds are the name brand & not generic ones while this gets sorted out.Best wishes.

[Skypony in reply to Belliver]

Hi EileenUSA (welcome to the forum!) and Belliver. May I ask you Belliver about your comment that calcium affects the absorbtion of Urso. I didn't know this, and it's not on the leaflet that comes with my brand of Urso. How did you find it out, please? Many thanks, and best wishes to you both.

[Belliver in reply to Skypony]

Hi Skypony, I did some research & I can't find the calcium/ urso absorption issue myself!!I know there is an absorption issue with the Synthroid/calcium. I have read/ heard from several reputable sources about possible absorption problems with regards to calcium & other meds but I am going to check this out with my pharmacist & let you know! Thanks for pointing this out!

[Skypony in reply to Belliver]

Thank you Belliver, that would be so helpful. I take Urso and calcium+vit D together several times a day - maybe quite a few of us do.

[bobbycat]

Hi Eileen

I, too, wonder, why you are on a low dose of URSO. I weigh just 8 stone and so am somewhat underweight at 5ft 4 ins but I still take 750mg. Maybe its a good idea to ask why dose is low? I do know that since taking the Urso it has helped reduce my liver blood counts. I have cirrhosis from PBC but did not take URSO before as I felt ill on it....now I take it every day without fail and feel better with it ....! too late for regrets but for anyone reading this it is better to feel sick than go to stage 4 as I have done.......

Good luck and a Happy Easter and hope the thyroid gets sorted.

[EileenUSA]

Thanks for the feedback. I weigh 135lbs (61kg) and had a lot of trouble tolerating full dosage but am now adding more in and hopefully will be tolerated now. I have seen URSO dx range listed at 10-15 grams per kg so math puts me at 780 dosage (using middle range between 10-15)

I went from great concern that I wouldn't be able tolerate any URSO so I'm just grateful that I've been doing well with this amount. My LFT's all returned to very normal levels at my last two labs. I am hopeful that adding more won't be a problem.

Caught it early hopefully and biopsy looked good. So at an early stage. I'm 64 and this PBC has been my retirement surprise.

This synthroid issue has been the big drag now. Robert you asked why the increase in synthroid- my TSH levels too high. Has increased in the last 6 months. Was at .100mcg, then .112 and now .125

Thank you all for feedback. I don't have much support around my disease so I hope to give and get support here too.

[2bear]

Hi folks. First of all yes Robert has been super fantastic .. I recommend him whole heartedly. He has been an angel during this most distressful time. I too have been experiencing issues with the Synthroid and I have not in the past. Unfortunately if there is not research done then we will be here together writing to one a other and wondering and such. I have tried to take my Urso several hours after the synthroid. I will be watching and following up with that. So for example Synthroid empty stomach followed by breakfast an hour later. I the. Have Urso at lunch and dinner.. the vitamins are a tricky thing .. I have contacted several pharmacist colleagues and such and they don't know. Perhaps together we can each ask those whom we know and we can share .. also as Robert attends the many conferences he does perhaps he can ask and gather some info .. also checking out organizations that look into MED interaction. ...

[EileenUSA in reply to 2bear]

Thank you so much for sharing. I'm already spacing several hours between morning's synthroid and lunch URSO. But I wasn't leaving a full hour before breakfast for Synthroid (for 5.5 years I had normal TSH tests even though I only had a 20-30 minute gap between synthroid and breakfast. ( I know the instructions for synthroid say 1 hour but for years it didn't make a big difference)

Anyway-- I'm going to give the higher dose a few more weeks and pay more attention to 1 hour before breakfast rule-- then will retest. I've been having several issues plague me now and just trying to get the "easier ones" sorted out...

it starts playing mental games with me. Ugh. I'm sure you all understand. The fatigue has been kicking me down.

It's such a blessing to be able to share with folks who understand.

[LorraineLouise]

Eileen,

I too had to have my synthriod adjusted after starting Urso. I had been on same dose for thirty years prior.

I grew up in the city and went to Lane Tech High School.

I went to many Cubs games in my younger years.

Go Cubs and thanks again for referral.

Lorraine

[gwillistexas in reply to LorraineLouise]

I had partial thyrodectomy at age 14, overactive. At 22 the remaining portion became overactive. 2nd surgery too risky for vocal chords. Radioactive iodine. Levels stayed normal until 2010. Can’t keep them normal very long. Now I wonder if it is partly due to autoimmune disease. I take levothyroxine.