Hyperthyroidism? I have to wonder.

carolm · Post by **carolm** » Mon Jun 04, 2012 9:48 am

Hi all,
I have really been battling the nausea for the past 3 weeks. I take the meds and they work as long as I'm sitting still, but sitting still is not an option most days. I constantly feel weak. I have very little stamina and once I use it up the nausea comes back in full force. Last week I weighed and saw I lost 3 pounds. Today I weighed and saw that i lost another 1. Sometimes when I lay down my heart is either palpitating or racing and I work with deep breathing and meditation try to get it down. Since I'm caffeine free I decided it was probably the weakness I feel and the lack of stamina.

Here's the weirdest symptom of all: yesterday I was driving somewhere and I got this warm, prickly feeling all over-- arms, face, back-- all over. It was bizarre and definitely not a hot flash.

My GI said last time "no more weightloss. If that happens you call me" so I suppose I will. She also cautioned me about low blood sugar with the small amounts of food I was eating. However, I have maintained my weight since last November until now. In the meantime I reduced my Entocort to 1 tablet daily and have had two successful food challenges. LC wise, I think I'm doing ok, but I feel horrid otherwise. I'm beginning to question if I'm dealing with more than LC. I see that a number of us have thyroid issues. And my dad had diabetes and thyroid cancer. Makes me wonder.....

Do any of you have hyperthyroidism? What tests are recommended for that? I'm sure my GI will want my GP to order those if she feels they are needed, but my GP doesn't 'get it' usually. I do have a local Affordalab where I can order my own tests.

Recommendations/suggestions anyone??
thanks
Carol

CathyMe. · Post by **CathyMe.** » Mon Jun 04, 2012 10:53 am

Hi Carol,
I too have been struggling with issues other than my LC and after extensive blood work, met. panels, and stim. testing, have found that several of my hormones are out of whack, most specifically the LH and FSH, which would account for my muscle weakness, extreme fatigue, crankiness, depression, lack of libido, etc. etc. I have a follow up with my endocrinologist Wed. and will likely be diagnosed with hypopituitarism. There is another thread about hormones and colitis on the board that you may find helpful. It seems as though these things go together..not sure in my case if the colitis triggered the hormone problems or visa versa but once I had my WD under control for 5 or 6 months, I felt that I should be feeling better, and instead have felt like Crap! I also have not had a cycle for 9 months and am not post menopausal so this concerned my OBGYN and she referred me to the endo. Good luck in your search. I would definitely recommend having a complete blood work up and metabolic panel done.

Post by **tex** » Mon Jun 04, 2012 10:57 am

Carol,

According to our informal member poll, approximately 9% of us have actually been diagnosed with hyperthyroidism. That's pretty high, when you consider that the prevalence of thyroid problems of all types in the general population is around 7%, and only a relatively small fraction of that is due to hyperthyroidism. I'm not sure what the tests are called, but you should ask your doctor for a test for thyroid antibodies to rule out Graves disease. While you're at it, though, it might be a good idea to rule out Hashimoto's disease as well. A couple of simple antibody tests are involved for those two conditions. Along with the antibody tests, you should have your TSH, Free T4 and Free T3 (and possibly regular T3) levels tested, also.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=7783

Is your B-12 level adequate? Low B-12 can also cause paresthesia. The good news is that since it was a global sensation, rather than unilateral, that should rule out a TIA (been there, done that).

Tex

MBombardier · Post by **MBombardier** » Mon Jun 04, 2012 2:37 pm

I wrote a long post and then accidentally closed my browser.

Tex, did you mean reverse T3 instead of regular T3?

To summarize: it could be thyroid. Autoimmune thyroid can masquerade as hyperthyroidism when a node goes hot.

I occasionally have the palpitations/racing heart when lying on my side. I went to a heart forum, and basically, they are just a nuisance. The heart doesn't work as well when we lie on our left sides. Mine is worse lying on my right, but then I have rarely done anything like other people, lol. When I lie on my back, they go away. However, of course I am not a doctor and I definitely hope you get them checked out.

I HATE nausea, which like you, I have as a symptom of MC. I am sorry you are experiencing this.

carolm · Post by **carolm** » Mon Jun 04, 2012 3:29 pm

Thanks everyone,
I spoke to my GI. She said to consider getting back on Dexilant if I thought the nausea was from excess acid (I didn't think so but I'll give it more thought). She also said to discontinue the Entocort since I'd already dropped it down to 1 capsule on 5-27. I'll see her on the 14th of June. She was reluctant to do anything regarding thyroid so referred my back to my PCP, who often doesn't 'get it' but I have an appt with her on Thursday. I'm going to specifically ask for thyroids tests and why (plus with a history of thyroid cancer and other autoimmune conditions in my family, I'm hoping I can sell it). I'm moving forward with her or without her. There are other PCPs in town for sure plus I can probably refer myself to an endocrinologist. Also, I checked and our local Affordalab listed tests for Grave's disease as one they test for. I didn't call for the price but that might be my plan B.

Tex, I don't know what my B-12 level is. I just started taking a B complex yesterday, along with my Vitamin D. I hope that isn't contributing to my nausea, which has been dominant today. It's kept me at home today. Zofran around-the-clock kind of day.

Carol

Leah · Post by **Leah** » Mon Jun 04, 2012 5:07 pm

Sorry you are not feeling well Carol. Just be careful if you decide to get entirely off the Entocort. I have read over and over on this forum from people who say there is a huge difference between 1 pill and none. Maybe one every other day?

Leah

carolm · Post by **carolm** » Mon Jun 04, 2012 5:16 pm

Thanks Leah, I had considered that. I'll give it more thought- it might be prudent to go more slowly.

thanks
Carol

carolm · Post by **carolm** » Mon Jun 04, 2012 5:21 pm

I just received another call from my GIs office. They definitely want me to try Dexilant and to dc the Entocort. I have to hand it to them. When I call they do respond and we do get a chance to discuss things. No one knows what to make of the weakness- I've checked my blood glucose 2x today and it was in the 90's and my BP was okay too. Maybe that's just part of the nausea?

Tomorrow is another day-- let's hope for a better day.
Carol

Christine. · Post by **Christine.** » Mon Jun 04, 2012 6:50 pm

I have taken a low dose synthroid tab for years for sub-clinical hypothyroidism. ( meaning I am asymptomatic). Are there any autoimmune or mc related issues with this problem? Constipation is listed as a symptom....ha ha. I wish.
Christine

Post by **tex** » Mon Jun 04, 2012 7:01 pm

Marliss wrote:Tex, did you mean reverse T3 instead of regular T3?

No, I meant regular T3 (just to make sure that it is well within the normal range). Reverse T3 typically isn't an issue except for older people.

Marliss wrote:I went to a heart forum, and basically, they are just a nuisance.

When I first read that line, I couldn't figure out why you concluded that forum was just a nuisance.

Then it dawned on me that you were probably referring to the heart palpitations.

Tex

brandy · Post by **brandy** » Mon Jun 04, 2012 7:01 pm

Hi Carol,

I hope you feel better as it sounds like you have a lot going on. Hopefully the tests will shed some light on things. When I started taking the B complex it helped but it seemed like it helped more over time....i.e. I did not have a burst of energy the next day. Keep us posted, Brandy

MBombardier · Post by **MBombardier** » Mon Jun 04, 2012 9:51 pm

In my opinion, for a truly useful thyroid panel, both the T3 and the reverse T3 should be measured so a person can see what the T3/rT3 ratio is. Here's a few things that tie into my reasoning:

Dr. Ken Woliner http://www.holisticfamilymed.com/thyroid/ says on Mary Shomon's about.com site: "Triiodothyronine (T3) is a thyroid hormone that circulates in blood almost completely bound (99.5%) to carrier proteins. The main transport protein is thyroxine-binding globulin (TBG). However, only the free (unbound) portion of triiodothyronine (free T3) is believed to be responsible for the biological action. Furthermore, the concentrations of the carrier proteins are altered in many clinical conditions, such as pregnancy.

In normal thyroid function, as the concentrations of the carrier proteins changes, the total triiodothyronine level also changes, so that the free triiodothyronine concentration remains constant. (In an abnormally functioning thyroid, this is not necessarily so). Measurements of free triiodothyronine (Free T3) concentrations, therefore, correlate more reliably with your clinical status than total triiodothyronine (T3) levels."

I was wondering, Tex, where you learned that reverse T3 is only an issue for older people? I haven't seen that. What I have seen indicates that it can be a problem at any age, that the problem comes from other things in the body that are out of balance. Although at my age, it doesn't really matter if it's only a problem for older people, lol.

This information is from Stop the Thyroid Madness http://www.stopthethyroidmadness.com/reverse-T3/. There is no citation, so bear that in mind, but I snagged some research which is underneath the STTM quote.

It’s normal to have RT3. Your body, especially the liver, can constantly be converting T4 to RT3 as a way to get rid of any unneeded T4. In any given day, it’s stated that 40% of T4 goes to T3 and 60% of T4 goes to Reverse T3.

But in any situation where your body needs to conserve energy and focus on something else, it will change the above percentages, changing the conversion of RT3 to 50% or more, and the T3 goes down, down. Examples are emotional, physical, or biological stress, such as being chronically or acutely sick (the flu, pneumonia, etc), after surgery, after a car accident or any acute injury, chronic stress causing high cortisol, being exposed to an extremely cold environment, diabetes, aging, or even being on drugs like beta blockers and amiodarone. On top of the chronic stresses of your life, there are three common physiological reasons patients have noted, with the first two related to your adrenals (low cortisol, high cortisol), and the third related to your storage iron and serum saturation levels. Even low B12 and other chronic inflammation and other health issues can cause it.

The following is from The Journal of Clinical Endocrinology & Metabolism 2005; 90(12):6403–6409:

This study demonstrates that rT3 inversely correlates with physical performance scores and that the T3/rT3 ratio is currently the best indicator of tissue levels of thyroid.

And another quote from the article, the information in which we have talked about before:

This study demonstrates that TSH and T4 levels are poor measures of tissue thyroid levels, TSH and T4 levels should not be relied upon to determine the tissue thyroid levels and that the best estimate of the tissue thyroid effect is rT3 and the T3/rT3 ratio.

And this one from Endocrinology 101(2):453-63:

Most endocrinologists believe that reverse T3 (rT3) is just an inactive metabolite with no physiologic effect, which is not the case, however. This study and subsequent others demonstrate that rT3 is a more potent inhibitor of T4 to T3 conversion than PTU (propylthiouracil), which is a medication used to decrease thyroid function in hyperthyroidism. In fact, rT3 is 100 times more potent than PTU at reducing T4 to T3 conversion. Clearly, rT3 not just an inactive metabolite. The authors conclude, “Reverse t3 appeared to inhibit the conversion of t4 to T3 with a potency which is about 100 times more than PTU…”

My T3/rT3 ratio was something like 13.2 when it should be over 20. I've talked about this in some thread here. rT3 likes to camp out on the cell receptors that are supposed to uptake free T3, and therefore the bioavailable free T3 cannot do its work. I remember reading somewhere that increasing the desiccated thyroid dosage will provide enough free T3 that the excessive rT3 is not so functional.

Anyway, to repeat myself, Carol, if you do the thyroid panel, I suggest that you do the reverse T3 along with the others. If you can get your selenium and iodine blood levels tested, that would be more good information, but not as necessary. I think this is especially important because of the thyroid issues in your family.

MBombardier · Post by **MBombardier** » Mon Jun 04, 2012 9:53 pm

Oh, and Tex--thanks for encouraging me to be more clear when I post something!

Post by **tex** » Tue Jun 05, 2012 8:35 am

Marliss wrote:I was wondering, Tex, where you learned that reverse T3 is only an issue for older people?

Well, I didn't exactly say that it was a problem only for older people, and I apologize if I gave that impression. What I said was, "Reverse T3 typically isn't an issue except for older people." That was intended to imply that it's uncommon (but not impossible) for younger people to have the issue.

The problem with the reverse T3 concept is that reverse T3 and the utilization of any data derived from that concept is apparently so poorly understood (and so poorly utilized) that it's difficult to derive any reliable conclusions from it. First off, the recommended method for utilizing this information is supposedly based on the ratio of T3 to reverse T3. Some sources state that Free T3 should be used, while others simply specify T3. One has to be careful that the right results comparison threshold is used, (either 20 or 10), based on the respective value of T3 that is used.

And then there's the units problem. In my most recent test, for example (and this is typical of most test results, I believe), my Free T3 was 2.7 pg/mL. My reverse T3 was 138. No units were listed, but the "normal" range specified was 90-350. When I look up the normal range for reverse T3, I find that this range (90-350) is commonly used, and the correct units are listed as "pg/mL".

OK, so the equation calls for 2.7 divided by 138 (in this case -- with no correction factor), and the result is supposed to be greater than 20 for normal people. The ratio for my results shows 0.01957. Now I'm not naive enough to believe that my ratio is actually that low. My guess is that the geniuses who figured out this mathematical relationship failed to allow for a correction factor of 1,000 in the units. I'm guessing that my ratio is actually supposed to be 19.57, which is close enough to 20 to be mathematically correct, when rounding to whole units. So I'm apparently a border line case. But how much confidence can anyone have in an analysis where the numbers are off by a fact of a thousand?

And that same error is found virtually everywhere on the internet where this ratio is discussed. I couldn't find a mathematically correct discussion of the equation. Has everyone forgotten that mathematics is virtually the only scientific discipline that is an exact science? Everything else is approximate, arbitrary, or relative, but basic mathematical analysis is as close to an exact science as we will ever get. One cannot simply drop a correction factor of 1,000 and be mathematically correct.

And the other problem is that the study on which this reverse T3 concept is apparently based, involved a study of thyroid (and other issues) of 403 elderly men.

http://www.holtorfmed.com/index.php?sec ... file_id=12

Incidentally, I can't remember if I've ever posted this before, but have you ever seen the site at the link below? It provides some very good insight into analyzing and treating patients who have confusing and conflicting test results (such as mine), and it includes charts that make it very simple to illustrate where any given set of data fall, relative to a euthyroid condition.

http://www.thyroidmanager.org/chapter/c ... -function/

Tex

P. S.

Marliss wrote:Although at my age, it doesn't really matter if it's only a problem for older people, lol.

Whattayamean it doesn't matter -- you're still young.

JFR · Post by **JFR** » Tue Jun 05, 2012 11:32 am

Carol,

I am wondering how you are feeling today. I have spent a good deal of my life nauseous and I know how debilitating that can be. Luckily for me that is not the case presently. I hope you find some relief and some answers to your questions. Did you decide to take your GI's advice about medication?

Jean