ILoveSugar History

[sweetpeat]

I think you should go back to haidut's original recommendations and try bromocriptine and clonidine to manage bowel inflammation. ..

I think you should stop the thyroid if you do not have a full panel that tells you exactly what is happening. .0008 is fine with Ray *as long as you do not have any entrenched deficiency*.

I agree with this.

I think your stress and anxiety are most likely inhibiting your thyroid function and not allowing the t4 in the cynoplus to convert to t3. When you have too much t4 that's not being converted, it can make you feel more hypo, as seen by your bad reaction to increasing the cynoplus. I think you should look into the recommendations for dealing with your stress and digestive issues and focus on getting a plan for when you have the available finances.

Once the stress is under control, you can then experiment with increasing the thyroid, if necessary. But in the meantime, I would advise against increasing t4 until you've addressed the stress. If you have some t3-only meds, like cynomel, you could try taking a small crumb a few times a day. I'm talking tiny 1mcg bits to see if it helps with the constipation. But if it exacerbates the stress reaction, you probably shouldn't push it. Have you tried cascara? I didn't see it mentioned in your list.

I know you mentioned that talking to people increases the stress, but are there also certain times of day when it's worse? Like a pattern of some kind?

 

[bornamachine]

Ilovesugar, thank you for writing your story for us, sorry you had to go through so much and still do. Have you ever done hair tissue analysis and also have you ever done a fasting iron panel blood test?

 

[HDD]

Peat on TSH- "Until there is evidence that very low TSH is somehow harmful, there is no basis for setting a lower limit to the normal range." "Some types of thyroid cancer can usually be controlled by keeping the TSH completely suppressed."

Until you get bromocriptine and clonidine, you might try the cyproheptadine again if you still have some. You could try .5 mg a few hours before bed to lessen the morning grogginess. Once you tolerate the small dose, you could try increasing.

I was thinking you could cut the cynoplus into 1/4 or smaller since it has 15 mcg of t3 in half. And as sweetpeat said you could try very small nibbles of cynomel.

You mentioned undereating which is surely contributing to your overall health. Forum member, Jenn, ate mostly potatoes cooked in coconut oil for 6 months. If you cook them well and add butter or coconut oil and lots of salt this could be helpful. I mentioned blood sugar before and I still think it could be part of the problem. Broda Barnes states that most people with hypothyroid have hypoglycemia. Thyroid therapy is the cure but while you are trying to increase thyroid then diet is very important. Barnes advises using fat. Maybe small amounts of coconut oil with meals/snacks could help. Others sip on milk or juice or drinks with salt and sugar to maintain blood sugar. Peat said that some people can run out of stored glycogen in 2 or 3 minutes.

Have you tried the magnesium bicarbonate drink haidut recommended? It is very easy to make and very effective. You can find directions to make this on the forum.

I hope you are having a better day today.

One more thought, are you supplementing selenium or getting it from seafood?

 

[Peata]

I hope you get your GI issues sorted out because it really does seem like the heart of your problems. I have been surprised by how many symptoms do not seem like they could have anything to do with the gut, but resolve once it's feeling better.

Like I said, I get some similar symptoms at times to an extent, but they go away when I take some Dramamine. Also, I do better when I eat solid foods when I get up. It looks like you're mostly having milky coffee. Could you start with something more substantial, anything that sounds good? I just found by experience that starting with coffee doesn't make me feel as good as when I start with other food and then have coffee. I think it's a blood sugar thing in that case.

 

[iLoveSugar]

Things didn't start working for me until I learned to overcome my own stubbornness. I would give the pregnenolone another shot. After all, ray says you really can't take too much. Worked for me and I had your exact symptoms.

I will take more, took some tonight.

post 100504 With respect to all the strong and excellent minds who suggested you may have parasites, I personally don't think you have parasites. With the caveat that there are symptoms you mention that could be *liver* parasites but I can't imagine where an American could have picked those up.

Also just a caution. I know RP believes very strongly in thyroid supplementation and sometimes it seems that he may be recommending that people supplement with T4 even when their TSH levels are low. But personally I think that is how I got into trouble a year ago. I was supplementing thyroid when my TSH was already at .3 and my TSH got down to .00018. I believe I was suffering from thyrotoxicosis a couple months later * but I did not have the nutritional support to handle my own metabolism.* I crashed and I am sick as hell now. I realize now I was severely deficient in most of the b vitamins, magnesium and copper, just to start. I could have a TSH of negative one thousand but if the nutrients aren't there for my metabolism to pick up, then it could just make things worse. There are subtleties to what Ray is saying.

I think you should go back to haidut's original recommendations and try bromocriptine and clonidine to manage bowel inflammation. I am starting to think your real issue is some kind of ileus or pseudo-ileus due to malnutrition or infection, dysbiosis or nerve damage. Lots of gut stuff won't turn up on scans even though it can be really debilitating. Docs can look for years and not "find" anything.

I think you should stop the thyroid if you do not have a full panel that tells you exactly what is happening. .0008 is fine with Ray *as long as you do not have any entrenched deficiency*.

Meantime you have got to get some nutrition in you. Topical A B C D E K is my suggestion.

Thanks, I haven't took thyroid in 2 days and don't plan to for the forseeable future.

post 100537

post 100501
I have tried different forms of B12, none have ever done anything. If anything, liver does more.

But did you actually check your levels??
Oral b12 is not efficient with supplements, even for healthy people, let alone a crohns
patient with intestinal damage at the ileum and/or resection surgery.

My B12 has always been mid-range.

post 100550 Biotin to improve ATP and Co2

I know RP doesn't recommend B-complex, but I am going to start one from Nutrabio. It has some Biotin.

post 100562

I think you should go back to haidut's original recommendations and try bromocriptine and clonidine to manage bowel inflammation. ..

I think you should stop the thyroid if you do not have a full panel that tells you exactly what is happening. .0008 is fine with Ray *as long as you do not have any entrenched deficiency*.

I agree with this.

I think your stress and anxiety are most likely inhibiting your thyroid function and not allowing the t4 in the cynoplus to convert to t3. When you have too much t4 that's not being converted, it can make you feel more hypo, as seen by your bad reaction to increasing the cynoplus. I think you should look into the recommendations for dealing with your stress and digestive issues and focus on getting a plan for when you have the available finances.

Once the stress is under control, you can then experiment with increasing the thyroid, if necessary. But in the meantime, I would advise against increasing t4 until you've addressed the stress. If you have some t3-only meds, like cynomel, you could try taking a small crumb a few times a day. I'm talking tiny 1mcg bits to see if it helps with the constipation. But if it exacerbates the stress reaction, you probably shouldn't push it. Have you tried cascara? I didn't see it mentioned in your list.

I know you mentioned that talking to people increases the stress, but are there also certain times of day when it's worse? Like a pattern of some kind?

I have tried cascara hundreds of times; it literally does nothing. Even in heaping doses.

post 100571 Ilovesugar, thank you for writing your story for us, sorry you had to go through so much and still do. Have you ever done hair tissue analysis and also have you ever done a fasting iron panel blood test?

Thanks bornamachine!

post 100573 Peat on TSH- "Until there is evidence that very low TSH is somehow harmful, there is no basis for setting a lower limit to the normal range." "Some types of thyroid cancer can usually be controlled by keeping the TSH completely suppressed."

Until you get bromocriptine and clonidine, you might try the cyproheptadine again if you still have some. You could try .5 mg a few hours before bed to lessen the morning grogginess. Once you tolerate the small dose, you could try increasing.

I was thinking you could cut the cynoplus into 1/4 or smaller since it has 15 mcg of t3 in half. And as sweetpeat said you could try very small nibbles of cynomel.

You mentioned undereating which is surely contributing to your overall health. Forum member, Jenn, ate mostly potatoes cooked in coconut oil for 6 months. If you cook them well and add butter or coconut oil and lots of salt this could be helpful. I mentioned blood sugar before and I still think it could be part of the problem. Broda Barnes states that most people with hypothyroid have hypoglycemia. Thyroid therapy is the cure but while you are trying to increase thyroid then diet is very important. Barnes advises using fat. Maybe small amounts of coconut oil with meals/snacks could help. Others sip on milk or juice or drinks with salt and sugar to maintain blood sugar. Peat said that some people can run out of stored glycogen in 2 or 3 minutes.

Have you tried the magnesium bicarbonate drink haidut recommended? It is very easy to make and very effective. You can find directions to make this on the forum.

I hope you are having a better day today.

One more thought, are you supplementing selenium or getting it from seafood?

Cypro scares me. The thought of being more foggy and droggy is treacherous. It literally DOOMS me. You mentioned seafood--I do eat oysters and am going to experiment with small amounts of Kelp. RP thinks trialing it in smaller doses is safe.

post 100574 I hope you get your GI issues sorted out because it really does seem like the heart of your problems. I have been surprised by how many symptoms do not seem like they could have anything to do with the gut, but resolve once it's feeling better.

Like I said, I get some similar symptoms at times to an extent, but they go away when I take some Dramamine. Also, I do better when I eat solid foods when I get up. It looks like you're mostly having milky coffee. Could you start with something more substantial, anything that sounds good? I just found by experience that starting with coffee doesn't make me feel as good as when I start with other food and then have coffee. I think it's a blood sugar thing in that case.

I am starting my day off now with a shake, more of a solid form than liquid. I may have 2oz of coffee or so mid-day, with lots of milk and sugar. I may also trial with dramamine again. I do agree, the gut has to play a large part here.


On side notes, I am going to experiment with B-complex, some kelp, and explore iron issues. Yesterday wasn't a terrible day, but I took a klonopin early. Today wasn't so good, woke up at 11, still extremely tired. Ate about 2500 calories. Tired, sore, and foggy.

 

[jb116]

post 100724

post 100537

post 100501
I have tried different forms of B12, none have ever done anything. If anything, liver does more.

But did you actually check your levels??
Oral b12 is not efficient with supplements, even for healthy people, let alone a crohns
patient with intestinal damage at the ileum and/or resection surgery.

My B12 has always been mid-range.

Serum levels can be misleading. To be thorough try MMA test and also check for MTHFR gene as well.

 

[iLoveSugar]

I did MTHFR testing a while ago. Attached results.

 

[jb116]

post 100788 I did MTHFR testing a while ago. Attached results.

nice! half way there. MMA can definitively tell you if you aren't absorbing b12.

 

[iLoveSugar]

I've tried various sources of b12 and never felt anything. So if it isn't absorbing, I would think of the kinds would have worked.

 

[iLoveSugar]

I really can not be anymore Foggy and doggy than I already am. I literally get brain zaps all day. Alot of the stuff recommended all has drowsy and tired side effects.

 

[Sea]

post 99930
My current diet is as follows:

Wake up, drink 4oz coffee with full cup of milk and 2 tbs sugar
shake (rinsed cottage cheese, sugar, coc oil, fruit juice,salt, sometimes ice cream in it)
carrot salad
another shake from above
parmesan reggiano cheese with shake

Other foods but not daily are oysters, liver, steak, potato chips, coke/pepsi, bamboo shoots

I get between 2k-3k calories per day, and even at that, it's very hard. My stomach is always bloated.

I may have forgot things, so I may continue to add to this.

If you are always bloated I would suspect the milk, sugar, ice cream or fruit juice. Milk is very difficult to digest the more hypothyroid you are and I really wouldn't bother with milk unless your digestion is good. Sugar is also difficult to digest because it can feed overgrown bacteria, I think honey, refined starches/potato(eat them with honey to avoid a crash), juices with 0 fiber(usually cheap from concentrate juices have the fiber removed), fresh squeezed orange juice, or sodas are preferable when you are in such a state. Ice cream might also be causing you problems and is another food I wouldn't bother with until your digestion is fixed. I think that greek yogurt, cheese, or goat products are easier sources of dairy to digest.

Your diet is probably very low in sodium. I think that when you are hypothyroid, it can be very difficult to meet caloric requirements without starches. I think that when you remove starches you can have an even higher sodium requirement(6+ teaspoons). And, I think that there is a massive difference between consuming like 2 or 3 teaspoons of salt and 6+ teaspoons/day. Generally, the more hypothyroid you are, the more salt you will require and salt really helps a lot with digestion.

Other than the carrot salad you aren't getting much fiber. I think that the more hypothyroid you are, the higher your requirement for fiber is. Fiber helps the liver detoxify stuff, and the more hypothyroid you are the further behind your liver is going to be. I would experiment with just adding like 5-10 carrots to your shakes and drinking it spread out throughout the whole day although not necessarily everyday as I think you usually will reach a point where more fiber is just taking up space and no longer helping.

Since minocycline was unbearable for you that indicates that it was working and killing off bacteria. The problem was your body was to weak to handle it, which isn't surprising since you already feel sick and minocycline is a super strong antibiotic. You could try a weaker antibiotic like tetracycline or doxycycline, or wait until you feel a lot better from your diet and then try minocycline again.

 

[Giraffe]

ILS, is your skin blue around the eyes?

 

[YuraCZ]

Sea is right. FODMAP is problem here for sure..

 

[Peata]

Have you ever had a scan to see if your intestines are impacted? You have mentioned you barely can go to the bathroom and laxatives aren't helping much. I have a relative who claims she had extreme issues from an impacted bowel. This occurred when she was bedridden for a while. Nurse had to manually help her go. Also, I guess you probably have had colonoscopies, but what did the doctor tell you is wrong with your intestines when they examine you?

 

[bornamachine]

ILS, do you drink green tea?

 

[iLoveSugar]

post 100812

post 99930
My current diet is as follows:

Wake up, drink 4oz coffee with full cup of milk and 2 tbs sugar
shake (rinsed cottage cheese, sugar, coc oil, fruit juice,salt, sometimes ice cream in it)
carrot salad
another shake from above
parmesan reggiano cheese with shake

Other foods but not daily are oysters, liver, steak, potato chips, coke/pepsi, bamboo shoots

I get between 2k-3k calories per day, and even at that, it's very hard. My stomach is always bloated.

I may have forgot things, so I may continue to add to this.

If you are always bloated I would suspect the milk, sugar, ice cream or fruit juice. Milk is very difficult to digest the more hypothyroid you are and I really wouldn't bother with milk unless your digestion is good. Sugar is also difficult to digest because it can feed overgrown bacteria, I think honey, refined starches/potato(eat them with honey to avoid a crash), juices with 0 fiber(usually cheap from concentrate juices have the fiber removed), fresh squeezed orange juice, or sodas are preferable when you are in such a state. Ice cream might also be causing you problems and is another food I wouldn't bother with until your digestion is fixed. I think that greek yogurt, cheese, or goat products are easier sources of dairy to digest.

Your diet is probably very low in sodium. I think that when you are hypothyroid, it can be very difficult to meet caloric requirements without starches. I think that when you remove starches you can have an even higher sodium requirement(6+ teaspoons). And, I think that there is a massive difference between consuming like 2 or 3 teaspoons of salt and 6+ teaspoons/day. Generally, the more hypothyroid you are, the more salt you will require and salt really helps a lot with digestion.

Other than the carrot salad you aren't getting much fiber. I think that the more hypothyroid you are, the higher your requirement for fiber is. Fiber helps the liver detoxify stuff, and the more hypothyroid you are the further behind your liver is going to be. I would experiment with just adding like 5-10 carrots to your shakes and drinking it spread out throughout the whole day although not necessarily everyday as I think you usually will reach a point where more fiber is just taking up space and no longer helping.

Since minocycline was unbearable for you that indicates that it was working and killing off bacteria. The problem was your body was to weak to handle it, which isn't surprising since you already feel sick and minocycline is a super strong antibiotic. You could try a weaker antibiotic like tetracycline or doxycycline, or wait until you feel a lot better from your diet and then try minocycline again.

Yeah, I think milk is problematic as well. I just have no idea how to get what I need from other sources. Potatoes make me extremely arthritic for days. I also got the same results from Doxycycline.

post 100816 ILS, is your skin blue around the eyes?

Yes, blue, and dark eyes. For a long time.

post 100825 Have you ever had a scan to see if your intestines are impacted? You have mentioned you barely can go to the bathroom and laxatives aren't helping much. I have a relative who claims she had extreme issues from an impacted bowel. This occurred when she was bedridden for a while. Nurse had to manually help her go. Also, I guess you probably have had colonoscopies, but what did the doctor tell you is wrong with your intestines when they examine you?

If I keep loading up on laxatives, every 3-5th day I unload. I ate bran for the first time yesterday, and had a good bowel movement. Like everything else though, it works once, and then stops.

post 100853 ILS, do you drink green tea?

I do not.

 

[tara]

post 100862 If I keep loading up on laxatives, every 3-5th day I unload. I ate bran for the first time yesterday, and had a good bowel movement. Like everything else though, it works once, and then stops.

Kiwi fruit are quite effective for keeping bowels moving for many people, if you tolerate them. They may have their down sides, but keeping bowels moving is pretty important.

 

[iLoveSugar]

I agree, its been merely impossible.

 

[Giraffe]

post 100862

post 100816 ILS, is your skin blue around the eyes?

Yes, blue, and dark eyes. For a long time.

This happens in hypoxia (= inadequate oxygen supply). Please, seek manual treatment to improve breathing.

 

[tara]

post 101109

post 100862

post 100816 ILS, is your skin blue around the eyes?

Yes, blue, and dark eyes. For a long time.

This happens in hypoxia (= inadequate oxygen supply). Please, seek manual treatment to improve breathing.

Good idea - I think I recall you were showing very low oxygen saturation in some prior tests?