Adrenal glands

Post by **tex** » Sun Dec 09, 2012 1:27 pm

Julie wrote:According to him, you don't feel really sick if you have LC. You just have D. Is that true?

While that's true for a small percentage of people who have this disease, it is not true for me, and it is not true for most of us here. Before I was able to control my symptoms, I was as sick as I have ever been in my life. I spent a lot of time on the toilet with uncontrollable D, while vomiting into the sink or whatever else was handy. I had head-splitting migraines and every bone and muscle in my body ached with pain. Even my hair and my teeth hurt.

At night, the pain of my bloated gut and the cramps and all the joint and muscle pains kept me from sleeping. My back ached miserably, and my neck was stiff and sore, (similar to having a bad case of the flu), so that I couldn't find a comfortable position so that I could get to sleep. I spent many a sleepless night. It's a shame that your specialist doesn't have MC himself, so that he could see what it's actually like.

Julie wrote:- He said to my GI that my LC occurs in a mild form. I didn't know there were different kinds of LC. I just thought that LC is about having infections.

As I discussed in the book, there is no way for a doctor to judge the severity of this disease, and that includes pathologists. Research shows that there is no correlation between the diagnostic markers of the disease and the clinical symptoms. See page 28 in chapter 3 in my book, if you want to show him references that prove him wrong. That would be reference number 8, for chapter 3, and reference number 9 shows that the same thing is true for celiac disease.

Actually, there are at least a dozen different types of MC, including several different types of LC, but none of them are mild.

Also, IMO, IBS does not exist, except in the mind of GI specialists who don't understand MC.

Tex

brandy · Post by **brandy** » Mon Dec 10, 2012 4:04 pm

Great news Julie, keep us posted on how things go, Regards, Brandy

Julie · Post by **Julie** » Tue Dec 11, 2012 1:54 pm

Hi Tex,

Wow, you had a lot of pain! All I had was feeling really nauseas, pain in the abdomen, stomach pains and of course, D. I couldn't eat and drink properly.

Now, I feel better. The problems I have now are because of the medecine, budenofalk. I can start weaning the hydrocortisone. I started with 10 mg in the morning, 5 mg at noon and 5 mg in the evening. Now I can go to 10 mg in the moring and 7 mg in the afternoon. I will have to do a bloodtest every two weeks. If the cortisol level goes down, I have to take more hydrocortisone. If the cortisol level stays well, I can start taking less hydrocortisone. This will be a proces of months if all goes well (if my cortisol levels stay well).

OMG, I am dealing with a specialist who has done his specialties in MC and has contacts in America, ... to help him with his patients. And still he doesn't seem to recognise my symtpoms. It is frustrating and I get angry. I have to trust a specialist to help me, and now I feel that I don't trust him anymore. I've read your book, the problem is I forget everything. This is because of the hydrocortisone.

My specialist also said that the chance of developping LC again is very small, I am now LC-free. Is this possible? Could it be true? I do still have uncomfortable moments but it's okay.

Thank you, Brandy, for your reply.

Grts

Julie

Post by **tex** » Tue Dec 11, 2012 2:12 pm

Julie wrote:My specialist also said that the chance of developping LC again is very small, I am now LC-free. Is this possible? Could it be true? I do still have uncomfortable moments but it's okay.

I'm afraid that's not correct, either. Your specialist is consulting with doctors in America who obviously don't understand the disease. There is no cure for MC. Once the genes are triggered, we have the disease forever. However, we can control the symptoms, by avoiding foods and drugs that trigger the disease. In other words, as long as we eat safe foods, and avoid drugs that trigger the disease, we can remain in remission. If we make a mistake, though, and eat the wrong foods, or take a drug that we shouldn't, the disease can return at any time.

When we are in remission, biopsies of our colon will test negative for MC, but that does not mean that we are cured — it simply means that we are in remission, and the disease is not currently active. No cure is available for any inflammatory bowel disease, and that includes all of them — Crohn's disease, ulcerative colitis, celiac disease, and microscopic colitis.

Good luck with your hydrocortisone treatment.

Tex

Julie · Post by **Julie** » Wed Dec 12, 2012 8:32 am

Hi Tex,

thank you for your reply. I can't believe that my specialist is so ignorent. He gave me false hope, that's a horrible feeling.

Thank you for your advice. I will continue to eat safe and avoid medecine.

Thanks

Let's hope that I can wean the hydrocortisone succesfully.

Julie

Julie · Post by **Julie** » Thu Dec 20, 2012 3:15 am

Hi everybody,

just giving an update: I feel better!

I came from 20 mg hydrocortisone to 17 mg. I did have some withdrawel symptoms such as: a heavy feeling in the head, pressure in the head, pressure on the eyes, stomach pains, bowel pains, D, sweating. I had these symptoms the first 5 days I weaned off the hydrocortisone. These symptoms dissapeared from one day to another.

The doctor took some bloodsamples today and I will know by tomorrow if I can start weaning more hydrocortisone off. I have backpain, my doctor told me that my kidneys were tender. She will test them for infections, ... It is possible that my kidneys hurt because of the hydrocortisone. It all comes back to that, right.

Wish me luck! It's about time that I got rid of the cortisone. Getting pretty tired of it.

Julie

ps: Best of wishes to everybody and let's hope the new year brings us a better health, love, support and luck.

tlras · Post by **tlras** » Thu Dec 20, 2012 8:43 am

So good to hear you are feeling better. Those withdrawals symptoms sound pretty yucky but glad you are weaning down and hopefully won't need them at all pretty soon. Will keep my fingers crossed for you!

Ditto....on the New Year! I pray every day that it will be better than this year from hell. But I guess it doesn't matter since the world will come to an end tomorrow.....lol!!

Take care!

Terri

Julie · Post by **Julie** » Thu Dec 20, 2012 8:52 am

Hi Terri,

Hahaha. I still wish for a good health, you never know if the world doesn't end tomorrow... Thanks for the reply!

Julie

H@ns · Post by **H@ns** » Mon Dec 24, 2012 1:56 am

Hi Julie,

Good to hear that your back on track!! it means your body is getting back in balance again with providing the right corisone levels in blood.
About the withdrawal symptoms; i've had pretty much the same even after carefully weaning off on a schedule. All you describe i recognize with a strong 'hell yes!!' feeling! (or whatever the English expression is..)

I firmly agree with all the reactions from Ted on your doctor's view on LC. All people are different and all deceases are therefor affecting people differently. Take my case of withdrawal from de meds and compare it to yours. same symptoms but different approach.

For myself i'm pretty sure that MC qualifies as an auto-immune decease although most doctors will not qualify it as such.
Also: The fact that most people here have a multitude of complaints that are officially not related to MC (according to statistics) merely states that MC is more a systemic decease than doctors seem to think! Again; in my opinion, i'm not a doctor, just an expert by experience..

keep listening to your doctors but keep a healthy sceptic approach. That's what's kept me going.

Julie · Post by **Julie** » Tue Jan 01, 2013 12:55 pm

Hi everybody,

I am currently on 14mg of hydrocortisone. I do feel strange now. The first week of 14 mg was amazing. I felt great! But now I feel strange. I have a light feeling in my head and I feel like I have a bad case of the flu. I feel weak. And I feel that I am present and at the same time not present in a room. This is probably a neurological symptom.I wonder if my cortisol levels are still okay, or are these merely withdrawel symptoms? I have to do a bloodtest on Thursday, I will know more on Friday.

If my cortisol levels are still great, I can wean off some more hydrocortisone. Let's hope that I'm just expierincing side-effects of the cortsione and that my levels are okay.

Happy Newyear by the way!!!!

Grts

Julie

Post by **tex** » Tue Jan 01, 2013 5:24 pm

Happy New Year Julie!

I hope that's just a temporary side effect of the withdrawal. I wonder if your doctor might have you lowering the dose too rapidly. Your adrenals may not be able to adjust that quickly.

Please let us know what the test results show.

Tex

Julie · Post by **Julie** » Sun Jan 06, 2013 9:50 am

Hi everybody,

Here were my bloodresults: I went from 21,4 to 22,7 cortisol!!!!! So it went up, while I was weaning the hydrocortisone off. You can go up to 23, higher then 23 isn't good. The doctor said that she was so happy to see those results. Instead of going down, I'm going up!

Does this mean that my adrenal glands are beginning to work again?

I can now go from 14mg of hydrocortisone a day to 10 mg a day. Good news for the beginning of the year.

Grts

Julie

Post by **tex** » Sun Jan 06, 2013 10:56 am

Does this mean that my adrenal glands are beginning to work again?

Yes, they would have to be producing more cortisol in order for the blood level to increase while you are reducing the dosage of hydrocortisone.

Cortisol levels can change at various times of the day and night, but if your adrenal glands were not producing cortisol, your blood level would have gone down, so you can be sure that they are working again.

That's very good news. Eventually, you should be as good as new again.

Tex

Julie · Post by **Julie** » Sun Jan 06, 2013 1:17 pm

OMG! That makes me so happy! I finally feel like I have control over my life. The LC has calmed down and my cortisol levels are rising.

To be honest, I had a very bad year. I've been hospitalised 4 times and I was so sick for e very long time. With the GF diet and less stress, I feel so much better.

I am so gratefull to have found this website. I've learned so much thanks to all these wonderfull people here.

My specialist is still against my GF diet, but what does he know? He doens't have LC so he can't feel the difference I feel with the GF diet.

This year will be different, I can feel it.

Thanks for your reply Tex!

Julie

Julie · Post by **Julie** » Wed Jan 30, 2013 7:02 am

Hi everybody,

Just giving an update: I am now on 6mg hydrocortisone a day. I went from 7 mg to 5 mg, but that didn't work well. I was sick all the time. I was tired, had headaches, had bowel problems, ... So we had to change it into 6 mg a day. It is a little bit better, but it's not what it should be. I still have these horrible headaches, I am still very tired but now I can go to work.

I have to do a bloodtest tomorrow. We will see what will happen after that. It is not very good news, it's not like last time...

I hope that I can wean off the cortisone succesfully and that I won't have addisson anymore.

Grts

Julie