Is the entocort or thyroid causing the problem

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DebE13
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Is the entocort or thyroid causing the problem

Post by DebE13 »

Well, I skirted the issue with the Pepto trial with my GI. It didn't work at 6-8 tablets years ago and I didn't want to see if 2 tablets/day would work now. The nurse called back and said doctor wanted me to try upping my entocort to 6mg/day for two weeks. I was torn with telling her again I don't want to change what I'm doing because of the numerous stressors in my life right now but decided to go ahead and do it. In addition to several legal matters with my employer I am now struggling with my sleep. My son is home from college and has a factory job in which he has to get up at 4 AM everyday. My three cats now tell me when he is up so I am also up much earlier than usual. Once I start to wake my bowels do the same and often make it impossible to go back to sleep. They kick in and I HAVE to get up to go to the bathroom. I am not able to lay back down and fall asleep. I never could. I decided to up the entocort to at least see if that would help my morning trip to the can. After day three, it has. But I am now also feeling much more fatigued and not myself. I now have loose stools/D instead of WD/D. I am still averaging 4-6 runs to the bathroom so that hasn't changed. On my previous dose of 3mg every 4-5 days all my trips would be right away before I went to work. Now it is spaced out a little more throughout the morning. I don't like that at all.

The higher dose makes my insides uncomfortable and it feels as if it constricts my intestines so it's harder "to go" but it is still D. Normans may be worth the trade off but if I am to continue to feel crappy, I like my old plan better. I doubt if my GI would understand if I said I had constipated D. :lol: It's also been only three days and maybe things would improve if I continue but I could not bring myself to take 6 mg today. I only took 3mg. I drag less if I have more D and I was ok with that. It is my GI who has taken interest in me again and I'd like to tell them to find someone who is eager to pop a pill and everyone will be happier.

Obviously I am still eating foods that are triggering inflammation but I have been coasting on good enough for now. My GI will not agree and I have no energy to argue. I am also debating if my symptoms are from my thyroid. I know my meds aren't right yet and have two more weeks before I have labs done. I plan to ask for the liothyronine (T3) to be doubled as I am only taking 5mcg in the morning. I want to add one in the afternoon and decrease the levothyroxine (T4) however the formula he uses works. He did finally admit that I am not a good converter so I hope he will oblige. It's most likely a combination of MC, Thryroid, and stress with no magic answer.

I am I wrong to not give it the full two weeks and taper from there- again? I'm thinking I had a plan and should have just stuck to it. Maybe not the best plan but one I was content to live with for now.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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nerdhume
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Post by nerdhume »

DebE13
I doubt if my GI would understand if I said I had constipated D.
Your GI might not understand, but most of us here probably do. I have been dealing with constipated D for the last couple of weeks. Feel like I am constipated, need to go, can't go, then I do and it's loose. So I am can't really take anything to help it :shock:

I also very well understand the wake up. If I wake up in the wee hours of the morning, if I don't go back to sleep right away then my morning BM will start rumbling. Once I am up that's it for me, can't go back to sleep. This is why I am usually up around 4 am.
If I don't go right away then the first cup of coffee will usually speed things along. I too, like getting that out of the way first thing in the morning and not having to deal with it later in the day.

There is no magic answer for any of us, we just muddle through and lean on each other for support because the rest of the world doesn't understand it :wink:
Theresa

MC and UC 2014
in remission since June 1, 2014

We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
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DebE13
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Post by DebE13 »

I should be thankful at my progress instead of impatient. This year at this time I was pretty much tethered to my couch, the bed, the lounge chair......not able to function. That was due to my thyroid but now that I am over the big hump and still waiting to fine tune things I just get annoyed that I tire out faster than before and need to downsize my to-do list for each day. My expectations are too high. I am starting to feel more overwhelmed again with daily chores so I'm frustrated because I thought that was behind me.

I give credit to all of us and especially to those of us that deal with multiple issues. What a chore trying to figure out which medical malady is to blame for certain symptoms. Reading what some of our other members are dealing with, I still feel fortunate that it's not worse for me.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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tex
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Post by tex »

Deb,

Corticosteroids suppress the TSH, which would cause the thyroid to produce less thyroxine. Since you don't have a thyroid gland anymore though, that can't happen. I wonder though, if there might be another way that corticosteroids might prevent your body from utilizing some of the thyroid hormone supplements that you are taking, because the way that they cause the problem involves suppressing the TSH production of the thyrotropic cells of the anterior pituitary gland, and/or the hypothalamus. Since these drugs are capable of suppressing TSH production, that implies that they might possibly also affect other feedback mechanisms controlled by the pituitary and hypothalamus, and as a result, suppress uptake or utilization of the supplemental thyroxine. Obviously I'm just guessing here, but this scenario should be possible. Here's some info on drugs in this category:

DRUGS THAT SUPPRESS TSH OR CAUSE CENTRAL HYPOTHYROIDISM

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by Gabes-Apg »

Deb
i think having multiple issues is what makes it easier to fall into the headspin of overthinking things, we want improvement without jeopardising progress thus far for the delicate web we are in.
part of the frustration is the improvement can be so gradual that we dont notice it persay.

deep breaths, listen to your body when you are calm, know that the gift of time and patience is very very generous and just as important as what we eat, and the supps and meds we take.
you are on the right path, with the right shoes on, be at peace with that.

Dont compare yourself with others, no two journeys are the same, we all have a matrix of factors in the background that most do not fully see, whether it be family, partners, work, children, financial, mental, emotional, physical, other health issues - basically what shoes we are wearing for the journey!
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
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Post by brandy »

Hi Deb,

I felt lousy the whole time I was on entocort and less lousy on the smaller doses.

Re: sleep--I slept like a rock pre MC. MC brought a lot of sleep issues. I tried about 10 different herbal/otc things. The only thing that helped was magnesium. THAT REALLY HELPED MY SLEEP. As you have D, I'd recommend the magnesium oils or Epsom bath at night. Use at night about 1-2 hours b/f bed. I take magnesium citrate 400 mg but I would not recommend that for anyone with D.
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DebE13
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Post by DebE13 »

Gabes, that is so true. One foot in front of the other........ I need to keep in mind the progress I've made instead of getting wound up in how long it's taking.

After three days of 9mg of entocort i stepped down to 3mg because of the cramping and general yuk feeling I contribute to the drug. Although, after opening my mouth about how it wasn't making much difference I had soft form last night so that is an improvement. I think I will continue at the 3mg and start my taper again but knowing if I want the trend to continue I will need to stop coasting and re evaluate what I am eating. I have been eating PB again which has always been questionable but never seemed to make that much of a difference one way or another but I do get a mild stomach ache if I eat too much. Putting it it writing makes it sound so obvious..... If it's questionable, then stop eating it (you fool) :lol:

I am hoping to make a job change (if it pans out or not is a different story) but it will require me to be up even earlier and out in the field instead of behind a desk with a bathroom down the hall. The idea of it scares me a bit but it's something that will alleviate the stress I'm under now and it's what I love. I've started lifting weights again and having my bathroom routine under control would be an added bonus. It may not happen for a while yet but either way, it's an incentive to get more serious about the final but on-going steps in this journey. Keep me in your prayers that I can trade in my loafers for my steel toes that have been collecting dust in the closet for over ten years. :xfingers:

Brandy, Thanks for the suggestion. I will have to look into that. I've tried the Epsom salt baths- relaxing.
I blame the prednisone for screwing up my sleep. It may or may not be the cause but I was never the same after taking it. I'd love to be able to sleep without earplugs. Every morning my youngest cat attempts to pluck them out of my ears. Apparently they double as a chew toy. :cat: oh I guess I should add, three cats in the house don't help either. I never have to worry about setting an alarm because one acts as the alarm clock and if that doesn't work there's two more willing to step in.
Deb

"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson

2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
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