Update and thyroid questions

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constantd
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Update and thyroid questions

Post by constantd »

Hello Everyone!

I haven't posted in awhile because well...life is crazy busy and I haven't been particularly sick. My daughter just turned 1 and is walking and therefore I can't get a darn minute to myself until after she goes to bed. I would like to recap the last 5 months for ya'll just to provide some insight but also because I have questions. So here goes:

I had my colonoscopy and endoscopy in April which showed absolutely NO signs of LC anymore, despite my continued symptoms. What it did show, however, was "chronic nonspecific gastritis." In other words, inflammation of my stomach which they can't explain since I don't have H. pylori and I'm not an alcoholic. This at least explains the gnawing pain that I will often have in my stomach. My GI doc at the time was really trying to press Imuran, despite the normal biopsies. Obviously I dropped that guy right away. There is absolutely no reason for anyone to go on Immuran who has normal colon/small bowel biopsies. I've been waiting for 6 months now to see a new GI doctor at OHSU in Portland, Oregon. SIX FREAKING MONTHS! I go next month to see them. I'm not expecting much at this point.... as far as I'm concerned Docs are good for running diagnostics and prescribing meds. This is coming from a Veterinarian whose father is a physician.

So I continued to see my naturopath because I love to spend money that I don't have (joke). She was convinced that I had SIBO (even thought the testing was negative for that) and that I should treat it. She prescribed Rifaxamin in June, and Holy Heck I had the worst diarrhea of my life for the week that I was on this medication. After a week I stopped because obviously this medication was only making me miserable. Long story short: Rifaxamin was the devil for me. It may not be the case for everyone, but I thought some people might find this tidbit helpful. I went back to see her in July as a follow-up and at that point she pretty much said: I don't know what else to try with you. We've tried everything and at this point I am grasping at straws. I brought up my thyroid and possibly trying to lower my dose to see if this improved my diarrhea (even though my thyroid labs were normal). So we lowered my dose from 88 ug to 75. I also mentioned that I was going to try Cholestyramine since I had a cholecystectomy 15 years ago due to liths. She says great, let's give this all a try.

Now, I will say that the month that I was on Cholestyramine was actually probably the best month I've had as far as bowel movements go. I had a 2 week period where I had normans, and the other days the stools were less frequent and more formed. But here's the problem: I already have terribly low cholesterol levels. After being on the Cholestyramine for a month my moods started to really be affected in a negative way, along with messing with my menstrual cycle. I figured that this might be because it dropped my cholesterol to scary-low levels to the point where my body was having trouble making hormones, neurotransmitters, etc. You need cholesterol to make all of these things. I didn't actually have my cholesterol levels rechecked because I couldn't get any darn Docs to do this for me, so I'm kind of guessing. But I ended up stopping the Cholestyramine. Within a month of stopping the Cholestyramine my moods have improved again. This was in August.

Since then I've still been on the lower dose of levothyroxine at 75 ug. Unfortunately my stools have still been loose to watery most days with urgency and cramping, etc. The mornings are always the worst. I am still GF/DF/SF and no alcohol/caffeine. I try and avoid processed things. I take 5,000 a day of Vitamin D, along with 1,200 of calcium carbonate and I recently purchased the liquid ReMag (thanks to you guys!) and put a teaspoon in my water daily.

New issues I've been having lately (here's where the questions start): I have been having mild to moderate leg cramps throughout the day, and my last 2 menstrual periods lasted about 9 to 10 days. Oh, and I've been knackered. Like, really tired. I haven't had these symptoms since I was first diagnosed with hypothyroidism 20 years ago. So, I go in this week and have my annual bloodwork drawn. My cholesterol is still very low (even when not on Cholestyramine), and my serum Calcium is low!! ( I think it was 8.2) What the heck? My TSH has gone from 1.14 last year to 2.8 now (so increased), and my total T4 has gone from like 1.7 to 1.2. I am wondering if even though my TSH isn't technically out of the reference range if maybe the lowered dose of levothyroxine is contributing to the symptoms I am having? And why is my calcium low? Does hypothyroidism cause low serum calcium? My Vitamin D was checked a few months ago and was great at 60.

Sorry for the novel and for all the questions. Any insight would be appreciated. I'm pretty sure that I just need to increase my T4 meds again, but I'm not sure I can get a Dr. to get on board with this. The PCP that ran the bloodwork said my thyroid looks great and that she attributes my finally gaining 5 pounds to the lowered thyroid dose. I attribute it to some gut healing and eating more calories. And does anybody have any experience with using Cholestyramine even though they already have low Cholesterol levels?

Once again, thanks for any insight. Hope everyone is well!
Katie
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tex
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Post by tex »

Hi Katie,

It's good to see an update from you. Here is my 2 cents worth regarding your questions:

Be aware that IBD clinical symptoms can continue long after mucosal histology has returned to normal (or at least sub-diagnostic) levels. There is a range of marker levels between normal and diagnostic levels that is undefined, unfortunately, and because of that, when lymphocytic infiltration levels fall below diagnostic levels, clinicians declare the patient to be free of the disease. Unfortunately that's a bit simplistic, in the real world, because most patients still have clinical symptoms at that point. Here's a quote from the lead article in the most recent Microscopic Colitis Foundation Newsletter where that phenomenon is discussed:
Why is pain so persistent in some IBD cases?
An excellent research article published by Azpiroz et al. (2007) describes why gastrointestinal tract hypersensitivity is a common problem associated with various functional gastrointestinal disorders (FGIDs), and how inflammation leads to hypersensitivity in (FGIDs).7 Furthermore, the article discusses why many patients continue to suffer from abdominal pain and other symptoms even when their disease is technically in remission (by the medical definition of remission, based on the absence of diagnostic markers). According to Azpiroz et al. (2007), damage to specialized cells found in the epithelial lining of the intestines such as Paneth cells and enterochromaffin cells (ECs) may persist for many years after the onset of remission of the FGID that was the cause of the damage.

Paneth cells help balance gut bacteria populations.
To comprehend the full implications of this, we need to understand a bit about the function of these cells and and their important roles in the regulation and performance of the digestive system. Paneth cells perform several vital functions in the small intestine. One of the more important functions of Paneth cells is to produce and secrete peptides and proteins that have antibiotic properties and the ability to prevent further microbe growth.8 It's known that these antimicrobial secretions play a vital role in maintaining a balance with gut bacteria in addition to providing protection from invading pathogens. IBDs are associated with disrupted Paneth cell functioning.

Enterochromaffin cells produce serotonin.
Enterochromaffin cells found in the small intestine are endocrine cells that produce and secrete approximately 90–95 % of the body's supply of serotonin. The rate at which serotonin is released by enterochromaffin cells regulates gut motility, and it can also promote issues such as vomiting, diarrhea, and the symptoms of the syndrome known as IBS.9 As Camilleri (2009) points out, too much serotonin promotes diarrhea, while too little can cause constipation.10 Furthermore, these actions are accomplished when serotonin binds to its receptors, known as 5 hydroxytryptomine receptors (or simply 5-HT receptors). Diarrhea is associated with an increase in blood plasma levels of 5-HT, and constipation is associated with a reduction of plasma levels of 5-HT.

Azpiroz et al. (2007) also noted that damage (and therefore, hypersensitivity) may persist for years in intestinal muscle tissue, and in certain cells in the enteric nervous system. The enteric nervous system, sometimes referred to as the "second brain", controls digestive system functioning. This discovery (that incomplete healing persists in certain parts of the GI tract and enteric nervous system) is not a surprising observation, since the mechanism responsible for perpetuating IBDs in the first place is based on a failure of damaged intestinal cells to heal (Persky, 2012, p 226).11
And here are references 7–11 from that quote:

7. Azpiroz, F., Bouin, M., Camilleri, M., Mayer, E. A., Poitras, P., Serra, J., & Spiller, R. C. (2007). Mechanisms of hypersensitivity in IBS and functional disorders. Neurogastroenterology & Motility, 19(1 Supplement), 62-88. Retrieved from http://onlinelibrary.wiley.com/doi/10.1 ... 875.x/full

8. Clevers, H. C., & Bevins, C. L. (2013). Paneth cells: maestros of the small intestinal crypts. Annual Review of Physiology, 75, 289-311. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/23398152

9. Braun, T., Voland, P., Kunz, L., Prinz, C., & Gratzl, M. (2007). Enterochromaffin cells of the human gut: sensors for spices and odorants. Gastroenterology, 132(5),1890-1901. Retrieved from http://www.ncbi.nlm.nih.gov/pubmed/17484882

10. Camilleri, M. (2009). Serotonin in the Gastrointestinal Tract. Current Opinion in Endocrinology, Diabetes, and Obesity, 16(1), 53–59. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2694720/

11. Persky, W. (2012). Microscopic Colitis. Bartlett, TX: Persky Farms.

Or you can download the entire newsletter from this link:

http://www.microscopiccolitisfoundation ... ebsite.pdf

The bottom line is, (IMO) because MC can affect any organ in the digestive system (similar to Crohn's disease), inflammation not caused by an H. pylori infection is virtually always due to the same pattern of lymphocytic infiltration found in the colon (and the small intestine) of MC patients. Here's a reference on the observation that MC commonly affects other organs in the digestive system:

http://herkules.oulu.fi/isbn97895142941 ... 294150.pdf

When Rifaxamin received FDA approval, the drug reps convinced most physicians that it was the greatest thing since sliced bread, and it could correct virtually any and all digestive system ills. But despite the glowing sales pitches, of all the members here who have tried it (some tried it repeatedly), to date no one has reported any benefits that lasted for more than a week or two, and of course as you have noted, sometimes it doesn't even meet that low standard of efficacy.

I completely agree with your views on the importance of cholesterol. IMO a lot of people in the general population have had their health and probably their longevity compromised by the medical community's misguided attempts to suppress cholesterol levels below "safe" (healthy) limits.

Low serum calcium can also cause diarrhea. Regarding your low serum calcium level, I would suggest checking your PTH (parathyroid hormone) to rule out hypoparathyroidism. But be sure that when the blood draw is made, both PTH and serum calcium are measured from the same draw. One test without the other is meaningless, because PTH and serum calcium are inversely linked. When serum calcium is low, the PTH should be high (to promote more calcium in the blood). If both serum calcium and PTH are low (or at least if PTH is not high when calcium is low), then the parathyroid glands are not functioning properly.

However, note that magnesium deficiency can cause low serum calcium by compromising the ability of the parathyroid glands to function normally. Leg cramps are a strong indicator of a magnesium deficiency, and leg cramps during the day are an extremely strong indicator of a severe, chronic magnesium deficiency. Magnesium deficiency prevents the body from being able to utilize calcium in the diet. IMO your calcium supplement rate is dangerously high. High calcium supplementation without correcting a magnesium deficiency can lead to sudden cardiac arrest. Ideally, when calcium is supplemented, calcium and magnesium should be supplemented at a 1:1 ratio. And yes, magnesium deficiency can throw a monkey wrench into the menstrual cycle.

After you get your ReMag dose up to at least 2 or 3 tsp per day, those symptoms should begin to fade away. Topically-applied magnesium is very helpful for correcting a magnesium deficiency without provoking diarrhea from high oral magnesium intake. But I would drop that calcium supplement way down, or eliminate it completely. Do it in steps though, as you boost your magnesium level, so that your body can adjust to the changes. Please don't stop taking it abruptly. But that usually works best for just about any supplement (and many medications). Most people have more than enough calcium in their diet — it's magnesium that they need.

But please remember that I'm not a doctor, so none of the above is medical advice — it's simply what I would do if I were in a similar situation.

You're most welcome, and thank you for the update.

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 »

I have been having mild to moderate leg cramps throughout the day, and my last 2 menstrual periods lasted about 9 to 10 days. Oh, and I've been knackered. Like, really tired. I haven't had these symptoms since I was first diagnosed with hypothyroidism 20 years ago. So, I go in this week and have my annual bloodwork drawn. My cholesterol is still very low (even when not on Cholestyramine), and my serum Calcium is low!! ( I think it was 8.2) What the heck? My TSH has gone from 1.14 last year to 2.8 now (so increased), and my total T4 has gone from like 1.7 to 1.2. I am wondering if even though my TSH isn't technically out of the reference range if maybe the lowered dose of levothyroxine is contributing to the symptoms I am having? And why is my calcium low? Does hypothyroidism cause low serum calcium? My Vitamin D was checked a few months ago and was great at 60.



from the symptoms you are mentioning, I would suggest the following
- magnesium, how much are you taking per day and what type? the leg cramps and fatigue are strong indicators that you need more/better absorbable type
- hormone issues are linked to B6 and zinc imabalances - I would suggest getting these checked
- to help with the very low cholesterol, try to have things like avocado, fatty fish, increase B3 intake

also in line with the fatigue issues and with a toddler, have you had your iron and B12 checked?
Gabes Ryan

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constantd
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Post by constantd »

Thanks for the quick replies Tex and Gabes!

Interestingly enough, I've only started taking the calcium carbonate about a month ago. I had read on some IBS forum that calcium carbonate may help with BAD, so I thought I would give it a try. Essentially the calcium carbonate acts sort of like a natural "binder" and people have had luck with it. The good news is that calcium carbonate is the most poorly absorbed form of calcium, so I'm not too worried about getting too much calcium because I doubt I'm absorbing much. I also haven't really noticed it helping in the diarrhea and BAD department much either, so it's time to scrap it. And Tex you are completely right about checking the parathyroid hormone levels. I had to bring this up to my PCP, along with checking ionized calcium and phosphorus. Because otherwise she was just going to be OK with the fact that my calcium was low. Remember to always be your own advocate! I've diagnosed a few dogs with hyperparathyroidism, so I'm fairly aware of the interaction between PTH, calcium, ionized calcium, and phosphorus. It really is a bummer about the Cholestyramine though....it was truly the only thing that helped me out. I might give it a go again, possibly a lower dose, but try and get my Doc to monitor my cholesterol levels more closely.

And Gabes, I did have my ferritin, B12, iron, etc., all checked back in February when I was really exhausted postpartum, and they all came back fine. I am taking the ReMag liquid form daily; anywhere from 1/2 to 1 full capful if I can remember to put it in my water. And I also take a zinc carnosine tablet daily that my naturopath put me on called Endozin... I think it might also have some glutamine in it as well (fairly low dose).

I truly think that my lowered thyroid dose has got to have something to do with this. The only symptoms I had when I was first diagnosed at age 15 were 2 week long menstrual periods along with horrible leg cramps. And for those 2 symptoms to show up again after my dose has been the lowest it has been since initially diagnosed can't just be coincidence. My TSH hasn't been this high since I was probably 18. And pre-pregnancy I had been on 125 ug of levothyroxine for 10 plus years. So I think there's got to be a connection. Plus my skin is suddenly very dry, brittle hair, etc. It all just adds up. Unfortunately my doc is just so happy that I've finally gained a few pounds that she isn't going to let me increase my dose. SO FRUSTRATING. Feeling exhausted all the time isn't worth the extra 4 or 5 pounds darnit.

Anyways, I will let you know what my updated bloodwork shows next week after I get my PTH, ionized calcium, and phosphorus checked. Thanks again,
Katie
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Post by Gabes-Apg »

the other aspect now that you mention the hair and skin - amino acids.

http://www.imagerynet.com/amino/therapeutic.html
Gabes Ryan

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tex
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Post by tex »

Katie,

I agree with you about the TSH. The universal acceptance of TSH as the official gauge of thyroid function was a huge setback for many, many hypothyroid patients. IMO if hypothyroidism is being treated, then the TSH target should be around 1.0, and I'm not alone with that opinion. The problem is that virtually none of the endocrinologists agree with that. For most of them, anywhere in the so-called "normal" range is fine. :roll:

And I also agree that there is a lot about thyroid function (and thyroid malfunction) that is not understood by the medical community. I would be inclined to agree that the timing associated with the dosing change and the symptoms you describe is probably more than a coincidence. Doctors seem to always be looking for an excuse to lower thyroid treatment doses, but in the real world that's counterintuitive because over the long term, the thyroid adapts to the dose, and similar to the effect of corticosteroids on the adrenals, once the glands become "set" to that dose, reducing the dose rarely results in a full resumption of normal production. So in effect, when a doctor reduces the dose, they are implying that the previous dose was incorrect. Why would that be, if it were properly determined by testing in the first place? In the long-term, the thyroid is likely to produce less (not more) thyroxine.

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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