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When to ask to see an endocrinologist

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Ulcerative Colitis
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Posted 9/12/2018 12:09 AM (GMT 0)
Hey guys, I flared back up in June due to antibodies to Entyvio. I had gotten down to 5mg, but was bumped back up to 15mg. I started tapering down again in August, and I am currently at 6mg. We are tapering slower this time, only 1 mg a week from 10 down. I am however, feeling like I am really having a harder time this time around. I also think my thyroid may be off. My hair is falling out profusely, my tongue is swollen, my normally very regular period was 6 days late, and some other things like fatigue that are crossover symptoms. Those of you that ended up needing an endocrinologist, did you ask your pcp, or you gi for a referral? Also, do you think I would benefit?
Posted 9/12/2018 5:21 AM (GMT 0)
Hm. Have you gotten your b12 checked? Pernicious anemia can cause swollen tongue, fatigue, hair loss, and irregular periods.

But, back to your question: I asked my PCP for a referral to an endo and it was one of the best decisions I've made in regards to my health. He was hesitant at first but then he heard the magic words "hot flashes".

Hope that helped

-t
Posted 9/12/2018 1:22 PM (GMT 0)
Hmm, good to know about that type of anemia having those symptoms. My platelet count has been high, not low. No low iron for a while either. Thank you.
Posted 9/12/2018 1:40 PM (GMT 0)
I'd say go if you think your hormones are out-of-wack. Often I recommend people go when there's persistent steroid withdrawal after discontinuing pred. Most endocrinologist's will say gasteroenteroligists are totally clueless on how to taper pred.

It really depends on the rules of your health insurance policy, whether you need a referral or not. I do not, I can just make an appointment with a doctor and go. Some insurance require another doctor to refer. Any questions, ask your insurance.
Posted 9/12/2018 8:08 PM (GMT 0)
My period was always weird on pred. I would go to the endo because of the thyroid, the tongue and the hair. It's tough, you've been on pred for quite a while, you really need to get off, but you have to take your time... Maybe they can help get you safely off. At least you're feeling confident about the Entyvio keeping you in remission? If your UC is unstable, there is the issue of needing something to stabilize while you try the next option. Has your GI ever brought up cyclosporine?
Posted 9/12/2018 9:04 PM (GMT 0)
I haven't achieved remission. I had symptoms even on steroids, however, so at this point I am getting off of them no matter what. The last thing he tried were steroid suppositories because he thought I had very little inflammation left. I only did a week because pain location told me I had inflammation farther up. We have never talked about cyclosporine. What advantage is that? I have a PCP appointment for next week, and I am going to see if I can get a referral. Today I thought about bouncing to 7 just for today, and I ended up taking 1 more mg in the afternoon because I felt like my chest was going to explode. Weirdly that was enough to make me feel better. Will try 6 again tomorrow.
Posted 9/12/2018 9:32 PM (GMT 0)
It could be an option to stabilize and allow you to get on something else for maintenance. Obviously you don't want to go back up on pred. I get that... but it sounds like you're still flaring to some extent and you will need time for whatever you try to work.

Has xeljanz been mentioned? When was your last scope? Have you tried enemas? have you had calprotetin or anything to see how it's headed?

Hopefully you find a solution soon - you've been on pred way too long. It's unacceptable in my opinion. It's hard to find good GIs. Do you go to an IBD center? You should if there's one near by. At least at those types of facilities, they deal with IBD every single day, and they are on the forefront of treatment.
Posted 9/13/2018 2:02 AM (GMT 0)
My Gi had me try enemas, but I started having pancreatitis symptoms with them too. I had planned to talk to him last time about adding something like Imurann but I was feeling better at the time, and was hopeful that moving the Entyvio to every 4 weeks was doing the trick. I am not flaring nearly as bad now as I was back in October through February. I am maintaining weight now, though I still can't seem to build muscle back due to Pred. There are IBD centers 2 to 3 hours from me, but that is just not realistic for me. I scoped in March. Was just left sided to 45 cm with some evidence of areas mildly inflamed higher up. It feels like it has stayed left sides since then. I was confused at first about Calprotectin, but I have never had that done. My last labs showed my white blood cells up and my overall platelets up. Doctors comment was that it showed inflammation. I am amazed at how much better I have felt the rest of today after taking the 1 additional mg. I should have gone with my gut and did a bounce day today, going back up 1.
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