Can't catch a break with any meds

[DebE13]

I decided I was going to try something new in hopes of getting things under control before my son gets married in July. I thought since my son tolerates Lialda well I would give it a try. I got very sick and and have been in a flare ever since. It got to the point where I was up 3-4 times at night and even had accidents while sleeping. I forgot how humiliating that is.

So I am back on 9mg entocort and a half scoop of cholestyramine. Neither have been that effective in the past but this is the first time I have taken them in combination. My night issues were solved within a few days which is fantastic but the 6-10 WD trips during the day hasn't changed. To make it worse, I believe the cholestyramine is interfering with my thyroid meds. My very distict hypo symtoms have returned most of which the doctors think I'm nuts when I mention them. The severe shoulder pain, neck pains, bubbleheadedness, spacey feeling, and a bad carpel tunnel flare in both wrists are back.

I called today for my two week update and expressed my concerns. Their recommendation was to add immodium which I declined because it hasn't been effective in the past and causes abdominal cramps. The second plan was to increase the cholestyramine powder to a half scoop twice a day. I asked how I would fit that in? Thyroid meds at 7 am and 1 pm with a six hour window between the two per my pharmacist. I take the powder at 8pm. Any later and I am up in the middle of the night to pee which is bad for my sleep. I asked if I should take the full scoop at 8 and was asked if I could call my pharmacy and ask and to keep them (my GI) in the loop. That was surprising but I did. The pharmacist told me to keep the meds six hours apart and ask my doctor how he wanted me to accomplish that.

I know my doctor isn't going to increase my armour so now I am stuck with what to do.

Any suggestions? It seems like nothing is really that effective. I am thankful I have regained some control but this situation just plain stinks. I've been trying for ten years now and it sure is discouraging.

[dfpowell]

Deb,


Congratulations on your son!! Sounds like he is doing better with his health issues.

I also did not have a good response to Lialda and progressively got worse when I tried it 6 years ago. Not everyone responds to Cholestyramine, you could discontinue it and see if it makes a difference with your symptoms, since it does not have to be tapered. I also wonder if it would interfer with the Entocort, I'm not sure but they may work in similar areas of the intestine. Tex will probably know.

Instead of Immodium, at night, when my get has been noisy, I have used Benadryl or Chlor trimetron, which are anticholingeric antihistamines and that has quieted it down with an added benefit of helping me sleep. I don't use an excessive amount because longterm use has been associated with Alzheimers.

My personal experience with Cholestyramine has been good, I have been on it for almost 2 years, and also taking Nature-throid. I think it worked for me because I also changed my diet to the Autoimmune Protocol. I am currently taking 1/2 scoop 2x/day which is down from 1 scoop 2x/day, I will be decreasing it further over the next several months and eventually d/c. I have been enjoying a very steady state for the past 7 months, with also being able to increase my diet options. I take my thyroid medication any where from 5-7 am, depending on when I wake up, and take Cholestyramine at 8-9 am and 8 pm. The Cholestyramine has not seemed to affected my thyroid medication as my labs have been consistent over the past several years. Also, my vitamin D has been stable.

Hope you can find some answers!

[Gabes-Apg]

Deb,
what are your Vit D levels like - are you taking Vit D3 and magnesium (or using topical magnesium) daily?

over the past couple of years our observations have been that any of the MC medications have limited scope of success if the Vit D3 and magnesium levels are low..


the other aspect to this that is worth considering.., you are having contact with more triggers (I am guessing external triggers not food based triggers) than your body and the meds can handle, and with your combo of health issues, no med is going to work while you are following current routine. I say this - not to overwhelm you or say the meds wont work, more so to highlight this was the case for me, I could not get improvement on chronic symptoms until I reduced the toxin load. This does sound overwhelming at first, as you feel like you have already made ALOT of changes, sacrifices, etc. sadly for a small number in this group that is the case.
I have had vast improvements since reducing the toxic load in my day to day life (living conditions, work environment, etc)
I don't live in a bubble, but I do have to limit the amount of time I spend in known toxic locations. For me and my combo of health issues and how my body reacts, there is no point doing all the work of the eating plan, and spending the money on supplements etc unless I manage the exposure to external triggers/toxins.

hope this helps

[Erica P-G]

Thyroid meds at 7 am and 1 pm with a six hour window between the two per my pharmacist. I take the powder at 8pm. Any later and I am up in the middle of the night to pee which is bad for my sleep.

Hi Deb...I would take the full scoop at 8 pm.

Also taking your meds at 7 a.m. they should dissolve and absorb within 2 hours, you should be able to take the Cholestyramine at 9:00 a.m. and be ok, that leaves the recommended 4 hours between that and more meds. So from what I can see from your description 9 a.m. or 8 p.m. should be just fine.

If you have given the cholestyramine 28 days then I'd say it probably isn't going to work for you at this time. If you have not given it this much time yet then it is up to you to finish the experiment of 28 days to find out. It took me that long for it to start helping correct my bowels. It helped me continue to heal and after 7 months I was able to completely stop it, and I have not taken any more since. I hang onto what I have in case my situation changes but I am hoping I am doing a better job at healing and staying healed.

Hugs
Erica

[Vanessa]

For what its worth, I was unable to heal completely until I started Dr. Deans protocol which required a more absorbable form of liquid Mag and other minerals. I also added Psyllium Seed powder and Prescript Assist probiotic after a year on her stuff. I need about 700 mg of Mag a day. Topical does not cut it for me. It must be oral.....

[DebE13]

Thanks for your thoughts. I may ned to suck it up and talk with my doctor about my thyroid meds. My numbers are always within range, generally at the lower end of the range, even when I have severe hypo symtoms so it has always been a struggle. That would also be why I am on my forth doctor.

I skipped the cholestyramine two nights now and I have noticed a subtle decline. I was hoping there would be no difference and I could just drop it. One of my biggest faults is getting frustrated early and discontinuing meds possibly before they have time to help. Although, in my own defense, I generally experience bad reactions which make it easier to give up.

It's nice to hear good experiences with the cholestyramine. It's only been two weeks so it's relatively new. The pharmacist told me to have a six hour gap between taking the two. I've read different times for before and after eating so I'm still trying to figure out who is right. Switching the time then interferes with taking meds on an empty stomach. I just try to be consistent with when I eat and en I take my meds. It gets to be tricky.

It was mentioned previously that Armour can be purchased without a prescription. I am seriously thinking about that but have no idea where a reputable source is.

My vit D is at the high end of the range. My previous doc had actually told me I should decrease my supplementation. I haven't. I still take 4,000 Ius a day. I also take magnesium daily so I should be good on that.

Thinking about environmental factors is completely overwhelming because I work in maintence and am around equipment and chemicals at times and also help run a little hobby woodworking business with my husband so am also around chemicals at home. None of that can change but I am very cautious. I previously worked in an office environment for many years and haven't noticed a change from one setting to the other.

[Vanessa]

Hey Deb,

I am so sorry for this continued struggle. I know how you feel on a certain level. Not to beat a dead horse, but your mag supplementation may not be enough if you have daily WD. The ReMyte liquid is also offered to support the thyroid. For some reason with you (and completely blow me off if I'm off base) I just feel like you've been on this loop so long your body doesn't have what it needs to find balance. I'm trying to find a way to say this without you wanting to throw me off the edge of a very high cliff...

Check out RNAreset.com. There is a free pdf. about ReMyte and ReMag that you just may identify with.
I know many pt.s have gotton off of their thyroid meds just by using this stuff. Also I know how you feel. Really? One more thing. I feel so sick already there is no way I want to start something else that I could react to...But these are just food. And like everything in the MC world, low and slow is key. I will now leave you alone!

[tex]

generally at the lower end of the range, even when I have severe hypo symtoms so it has always been a struggle.

When you're being treated for hypothyroidism, being in the "normal" range, but at the low end, may be the reason why you always have hypothyroid symptoms. I know the endo's disagree, (because the book says that's the case ), but being at the lower end of an arbitrary "normal" range doesn't work for many hypothyroid patients. This may not be the case for you, but you're no longer normal, that's why you're being treated in the first place.

My vit D is at the high end of the range. My previous doc had actually told me I should decrease my supplementation. I haven't.

This is probably not the case with you, because normally you need to have a 25(OH)D level above 150 ng/ml (see the exceptions below) in order to be at risk of hypercalcemia, but if you have a vitamin D overdose problem, it causes hypercalcemia. It manifests first as digestive problems.

The symptoms of hypercalcemia include:

feeling sick or being sick
poor appetite or loss of appetite
feeling very thirsty
passing urine often
constipation or diarrhea
abdominal pain
muscle weakness or pain
bone pain
feeling confused
feeling tired

In some rare diseases, you may be at risk of hypercalcemia even if you have low vitamin D levels and haven’t taken much vitamin D. These diseases include primary hyperparathyroidism, sarcoidosis and a few other rare diseases. See our Hypersensitivity page page for more information.

https://www.vitamindcouncil.org/about-v ... vitamin-d/

Has your parathyroid function been properly checked? To do that, you have to check your parathyroid hormone (PTH) level from the same blood sample that you use to check your calcium level. They're inversely related. You do that test a couple of times and compare to see if your PTH is responding correctly to your calcium level. PTH should go down whenever calcium goes up and vice versa. It doesn't matter if they're both in the normal range — it's the relationship that counts. If it's not responding properly, you have parathyroid problems, and that's why you feel so out of sorts. Doctors (even endos) sometimes overlook parathyroid problems, or do the tests wrong (they don't do them from the same blood samples) , because it's considered to be a rare condition, and they almost always miss rare conditions.

Tex

[DebE13]

VitDResult: 60 ng/mL
Ferritin 28 ng/mL

I don't think I have any issues with my vitamin D- just an overly cautious PCP?

I still am concerned about my ferritin but no one else seems to be.

I agree with the low range and that still sticks with me as a big red flag but my new doc would not budge. I take 120mg of Armour and that is as high as he will go. Maybe a new plea with the cholestyramine will change his mind but I'm not too hopeful.

I had my parathyroid glands tested regularly after my thyroidecomy and had no issues after the surgery with my calcium. Is that something that could change? Never thought about that.

Vanessa, I don't mind suggestions at all. I've learned so much through others. After ten years, I don't recall what it feels anything close to ok. Health is so easy to take for granted. All I know is my body seems intent on keeping the status quo, haha.

[Gabes-Apg]

Deb
environment wise, chemicals and woodworking are not the worst offenders.
Mold, especially in places where wifi is on constantly or high EMF environment is a much bigger concern.

I understand that you cant avoid all triggers totally, but Vanessa's advice about magnesium is right on, some of us need much higher daily doses. magnesium is key to clearing toxins.
and at home of a night, turn off wifi/EMF devices.

re the Vit D level, yes you have cautious PCP, your result is a normal result for someone with an IBD. the reason we harp on about magnesium is that in really simple terms, we need good levels of magnesium to use the Vit D3 properly. no point having the Vit D3 in the cells, if we don't have the magnesium for the body to use it properly..

[tex]

Deb,

That is an ideal vitamin D level, despite what your Dr. thinks. 100 ng/ml is high, and 150 ng/ml is too high.

Yes, the ferritin is concerning, regarding energy levels.

I've taken 2 grains of Armour (for about 5 or 6 months) and I still have a working thyroid. 2 grains worked fine, but I dropped back to 1 grain to make my doctor happy. The point is, that's not likely to be enough for someone who no longer has a thyroid.

Anything can change at any time, but it's no more likely that your parathyroid would change than anything else.

Tex

[DebE13]

Thanks Tex, I have a hard time letting that one go. Until I see my numbers at the higher end of the range I will not stop believing that is the problem. It boggles my mind as to what it would hurt to try. I am no stranger to being overmedicated so I know how it feels and it is not good. Thus there would be no reason I would continue to take more armour than needed. I thought I read somewhere that ferritin levels can improve when thyroid levels are optimized. I could be wrong...... I stopped taking ferrous gluconate when I started having stomach issues shortly after taking it.

I currently take 200 mg Doctors Best cheleated magnesium twice a day. I thought that was a good dose..... And was a bit concerned about creating more D.

I was at a standstill a few months ago after switching to armour and landing on 120mg as my dose (per my doc, not me). I asked to bump it up by 15mg just to see if it would help raise my numbers. I got a firm no and a follow up at the end of July. I decided to switch gears and focus on my MC again and was just plain tired of the endless circle of trying to figure out how to feel better. That's where the lialda started the whole new can of worms. I had decided to accept taking a pill if it would help but apparently my body doesn't agree.

[Gabes-Apg]

Deb
from memory the doctors best magnesium tablets are only 100mg per tablet - are you taking 2 tablets twice daily or 1 tablet twice daily?

further, what Vanessa and others here found, is that they weren't absorbing the full magnesium dose from tablets, so they may have been taking up to 400mg per day, but were only absorbing half to three quarters of this.
that is where many have benefited from using the Dr Dean ReMag product, highly absorbable. the other option to minimise D issues is using topical magnesium. Again many others here have managed to use topical magnesium to get great doses (above 400mg elemental magnesium per day) without any risk of D. Coupling topical magnesium with the drs best is another option.

[tex]

If you were doubling your dose that would be significant. But 15 mg is nothing. IMO your doctor is just being an ass about it. But if you increase your dose and it helps, it's also going to affect your lab numbers, and as a result your ass, I mean your doctor, is probably going to cut your dose.

Tex

[DebE13]

Thanks Gabes, I will have to look into that. I missed the part that said two tablets twice a day.... So I would be taking only 200mg.

Tex, this is the doctor that actually agreed to let me switch to armour so he is my good one and he is internal medicine not an endo. It's just terribly frustrating. He knows that there arent any doctors in the area that will prescibe NDT. Kind of funny how my numbers are pretty much identical to when I was on levothyroxine and tirosint. NDT must be doing its job. My thoughts are a little more would raise my numbers slightly into to uppper range which is still their "good" and I would finally see if I noticed the same difference I read so many peope say make the night and day difference. Also, if they went up to high then I'd just go back to what we know works...... It all seems pretty simple. At least this doctor isn't an arrogant jerk but it still leaves me in the same situation as before.

I'd like to give the cholestyramine a try but it has to be what's causing me to feel so out of sorts. My husband even commented on my disposition over the past few days. I am also curious if my scalloped tongue would normalize if my numbers were higher.