Taking Thyroid meds with PBC

[NotorDJP]

Hello everyone! I have a preliminary diagnosis of Papillary Thyroid cancer and they are talking to me about having my entire thyroid removed along with treatments later. My big concern, aside from the cancer diagnosis, is how the thyroid meds will work with my PBC. I have been reading horror stories about fatigue, etc on the ThyCa survivors site and It scares me because I already have significant fatigue with my PBC. Does anyone on here take thyroid meds, or had their thyroid removed? How does it effect you with your PBC? Did your Alk phos go up when you started taking the meds?

[mayday-Yeah]

Hi firstly am sorry to hear about your diagnosis. As if the Pbc isn't enough to be dealing with. I have an Under active Thyroid (proper name Hypothyroidism) which is another Autoimmune disease. I take Thyroxine 100mcgs a day no problems with talking it. I went to Dr as was feeling more fatigued than usual hence she discovered through blood test Thyroid was under active she said it was just under and if not been symptomatic she would have left it and rechecked it in couple of months to see if it would sort itself but as I was feelin totally floored with the fatigue she treated it and it did help.Best of luck for whatever treatment you need to get hope it all works and you feel better soon.X

[NotorDJP in reply to mayday-Yeah]

Yeah, that is what I was thinking! As if! I was afraid that taking my thyroid would make my fatigue much worse. Of course if I go on thyroid hormone it might improve, but medicine doesn't process that well through my liver. I'm really trying to get my head around how this works.

[Hidden]

Sorry to read of your diagnosis NotorDJP.

I know several people, some older than myself who have had their thyroid removed or been operated on or even still have their thyroid that is deemed not working correctly and they are all taking thyroxine now for life. I have no thyroid problems.

I am no doctor just got this PBC but like the urso we take for PBC that I see as a form of supplementation as opposed to a medication, I think that thyroxine is similar. All you are doing is replacing to your body what it isn't manufacturing for itself.

I expect there might be some teething problems in taking the thyroxine at the start until the dose is adjusted to a more correct level but I can't see personally how it would alter anything in PBC.

As I understand it certain medications can alter the bloods but I think in this case you might be monitored a bit more frequently for awhile until the thyroxine is adjusted.

[liver-bird]

So sorry you have more problems. I was diagnosed with under active thyroid before I knew about the pbc. I take thyroxine every day and it doesn't seem to affect the pbc.

My friend had thyroid removed due to cancer many years ago, she takes a higher dose of thyroxine and seems fine. Wishing you well

[cazz22]

I'm so sorry to hear your news.as if you don't have enough to contend with.speak to the pbc foundation.they will try and find the best answers for you.i only have half a thyroid but the rest works perfectly.i was told that if they only leave a tiny bit 9 times out of 10 you don't need medication but I'm supposing your treatment will be different.i really really wish you well.

[cil1]

I had my thyroid removed 16 years ago and have taken thyroxine ever since. My PBC was diagnosed 5 years ago. I would say that although it took some time to get the levels of thyroxine right don't remember the fatigue then that I have now. Personally I associate the fatigue with my PBC, not with my missing thyroid! Good luck to you for the future.

[Suziebeau]

I have both an under active thyroid and PBC I take my thyroxine in the morning and urso at night and it is fine. Once your thyroid function is properly replaced - as said before it can take a little while to get the balance right - it shouldn't exacerbate your fatigue at all.

I also wanted to say that my husband was treated for the same type of thyroid cancer last year. The operation was totally successful and he recovered very quickly. If you are unfortunate enough to get cancer, that is definitely one of the better ones! Chin up, stay strong and once your thyroid replacement is sorted you might actually feel a lot better as your levels will be normal.

Sx

[Tigger858]

Hi I had my thyroid removed and take 150mg of levothyroxine daily. I was only diagnosed with PBC after the thyroid op as I was experiencing severe fatigue which was not improving. I LFT was "off" according to my blood tests and that is when my GP started tests for PBC. I do suffer from fatigue which varies in severity, however, I believe it's down to the PBC as opposed to the missing thyroid. The thyroxine does its job well according to my blood tests, therefore the main issue for me is the PBC. Hope this helps and if there is anything I can help you with re the thyroid removal, don't hesitate to message me. Hope it all goes well 😊

[Tj2929783]

Hi Notor,

I just read your post today and I am very sorry to hear about this. I think that you will find that once you start the meds for your thyroid that you will gain some relief. I was diagnosed with an underactive thyroid about 10 years ago or so. I was so tired. I would get up from bed and crawl onto the couch. If I had to go down to the basement, I would almost cry coming back up, because my legs hurt so much. I had started menopause about 6 months prior and thought it was due to that, but it felt like more was going on.I went to the doctor and they did a thyroid test and it came back quite high. They put me on levothyroxine (Synthroid brand name). After a few weeks, I had energy again. It was like a miracle pill. They monitor your bloodwork very closely in the beginning to make sure you are on the right dosage and now every 6 months. The meds have been tweaked a bit over the years, but all in all, I am doing really well with the medication.

I wish you all the best. Feel free to chat anytime.

~TJ

[NotorDJP]

Thank you all for your responses. I feel somewhat better about this now. They have told me that they think the cancer is very early and surgery may take care of things without the treatment. We will see once I have my surgery. I hope to start on my thyroid meds asap, so if the surgery works and I have no cancer in my lymph nodes I should be able to start on it.