Back on entocort and feeling cranky

DebE13 · Post by **DebE13** » Sat Dec 20, 2014 9:53 am

I made it 41 days this time around and I finally gave in this morning and took 9mg of entocort in hopes of ending my misery. The last time I tried going off, and I've been doing a slow taper, I made it 23 days. That should make me feel better but I'm not sure if it does.

Entocort hasn't brought back Norman, I still have D using it but was generally limited it to 3-4 trips to the bathroom in the morning then that was it for the day. Being off of it now has gradually increased my visits to 4-6x in the morning and a couple times in the afternoon but not always. Being off it has created continued grumbles, water running through the pipes type noises, gurgles. What follows would be night issues but that hasn't happened yet but the thought of it creeps into my mind when I go to bed. Plus, I have the constant feeling of needing to go and don't quite feel like I'm done when I'm done. That in itself is causing additional stress which I don't need. I feel like going into an all-out rant about how much this really stinks but

In the past I would take two pills and taper from there which satisfied me. I'm wondering if I should keep up three pills for the next week and gradually taper to see if that actually stops the D. I tend to get stomache aches from the 9mg dose so have been quick to avoid it and settle for lesser results. But then again I wonder if it's worth bothering with since as soon as I go off all hell breaks loose. Is it better to reduce the inflammation or keep taking steroids. I've been using it in some form since 2011-mostly a low dose.

I remember now part of the reason I started taking my thyroid meds at night was because I wasn't sure of the timing of the two. I've been taking my levothyroxine at 5am when I get up and eating breakfast at 7 before I leave for work. I've not noticed a change in better sleep yet. How soon after taking the levothyroxine can I take my entocort?

I think I'm mostly crabby because it seems inflammation has increased in other areas since I've been off the entocort but that shouldn't make a difference. ?? My tongue is even more scalloped and sore than ever, eyes are bothering me more, and my gums are swollen behind my two front teeth making it painful to eat. I think there's a canker sore there- have a couple of them now which I haven't had problems with in a long time.

I sound like a mess!

Post by **tex** » Sat Dec 20, 2014 2:55 pm

Hi Deb,

Gilda Radner was right on target, wasn't she — "It's always something".

I have a hunch that stress may be the main driving force behind your symptoms. I hate to bring this up, but hypothyroidism is constipating. That implies that resolution of hypothyroidism tends to resolve constipation. In situations where constipation is helping to prevent diarrhea, then resolution of constipation can promote diarrhea. That suggests that better control of your hypothyroidism may shift the balance toward D.

It's difficult to say whether this is actually a factor in your situation or not, because D (if I recall correctly) never was completely resolved when your hypothyroid symptoms were at their worst. But if there was less D at that point, then the hypothyroidism may have been the reason.

I'm hoping that one of these days, most of the cloud of stress that continues to hang over you will dissipate, and with it, so will your MC symptoms.

Tex

DebE13 · Post by **DebE13** » Sun Dec 21, 2014 7:11 am

I was granted the referal to UW Health in Madison so I am hoping the recommended endo will help with my issues. No guarantees but at least I have hope. Not sure how long it will take to get in to see her. I heard it's a long time. My PCP got back to me and said my endo had no problem making the referral to get the second opinion and this doctor was actually one of his professors. Not sure if that should scare me or not. There's a possibility I may be changing health insurance policies, which is part of my stress, but that would be a good thing because it would also mean a change in jobs. Although, leaving a place of employment after 16 years can be nerve wracking even if it's for something better. I will work it out as it comes up but the whole unknown and no control over the situation has me at odds with myself.

Tex, are you saying if I keep with the higher dose of entocort, for now, and it gets me to a more Norman-like state that would benefit my thyroid issues?

Constipation has never been an issue for except for a few occassions that can be counted on one hand. My Mom told me as a baby it was a problem but nothing I remember. i've had D since 2007. Got the flu the day we closed on our cabin up north and when the flu passed the D never went away. Strange how clearly I can remember that exact day. Anyway, I may have had prednisone induced Normans on my first round using it (can't remember so well) but I cannot recall not having D since that time. The second time around with prednisone did not help the D and created more problems than it helped. My thyroid may not be the main culprit then. ?

I remember years ago I felt like the Energizer Bunny- I never stopped. I used to complain of not being able to slow down and my mind just raced. I'm not sure if that is part of Hashimoto's but I sure got a lot of stuff done.

The gurggling stopped with the first dose of entocort but I had mild cramping moreso in my butt than abdomen.

It is always something isn't it?

One step at a time and hopefully within the next few weeks I will have some good news that will be the start of better times. It could be so much worse but I'm hoping for a little bit better. ;)

Post by **tex** » Sun Dec 21, 2014 3:39 pm

Deb wrote:Tex, are you saying if I keep with the higher dose of entocort, for now, and it gets me to a more Norman-like state that would benefit my thyroid issues?

There are no known interactions between budesonide and synthroid, so Entocort shouldn't affect your thyroid treatment. The corticosteroid may improve your mood (by lowering stress), but I'm not sure that there will be any direct effect on your thyroid.

Deb wrote:My thyroid may not be the main culprit then. ?

Well, thyroid issues and IBDs are definitely closely associated, but it's difficult to say which causes what symptoms. Hyperthyroidism definitely causes D, and thyroid nodules typically cause hyperthyroidism symptoms. So if your thyroid was overactive because of the nodules, that may have caused MC problems prior to the removal of your thyroid. But with your thyroid completely gone, hyperthyroidism is no longer a risk (unless you are overtreated for hypothyroidism). Of course the continued stress of inadequate thyroxine replacement treatment may be contributing to MC symptoms (because stress is an MC trigger).

Deb wrote:I remember years ago I felt like the Energizer Bunny- I never stopped. I used to complain of not being able to slow down and my mind just raced. I'm not sure if that is part of Hashimoto's but I sure got a lot of stuff done.

That hyperactive pattern would be consistent with hyperthyroidism (not hypothyroidism). It's consistent with Grave's disease (not Hashimoto's). The removal of your thyroid has ended that possibility permanently.

Deb wrote:The gurggling stopped with the first dose of entocort

That's definitely a good sign. I still feel that stress is behind most of your inflammation, and when your stress levels settle down, so will your MC symptoms.

Tex