Hypothyroidism and MC

[MBombardier]

I almost titled this post "CRAP!!!" because that's what this day has been about. I accidentally gluten-ized myself yesterday with hot dogs that I had eaten before with no change in symptoms. Perhaps the ingredients changed, or perhaps because I have been eating gluten-free I fell victim to the hypersensitivity that Tex explains so well in a couple of posts I've read.

What's it called... shock wave? Tsunami? Oh, yeah, a flare. Not nearly descriptive enough, IMO, unless you are talking about a solar flare.

Anyway... it started about 2am with nausea, and after voiding almost all of the contents of my entire intestine (literally), I hopped on the scale and discovered that I weigh MORE than I did last Friday. This is soooooo frustrating.

I know that many on here are struggling to gain weight, and believe me, I take that very seriously, and do not denigrate that grave situation at all. But I am considered obese by the medical establishment, and although it is not "healthy" of me to want to lose weight because of my CC the fact that my excess adipose is sticking like glue though I've had D for months is insult added to injury.

Then, on top of that, my internet has been down for extensive periods today, so while I was trying to read the forum to see if there is anything helpful about weight gain, thyroid, etc., etc., I lost connection. Grrr... And I changed my profile picture, and every time I lost connection, my new profile picture went away. Grrr again...

Well, rant over... I guess... I haven't seen anything on the forum except one post pertinent to thyroid and gluten sensitivity, so that's my question: Is anyone else trying to manage hypothyroidism and losing weight at the same time they are trying to control MC symptoms?

[Zizzle]

I think I'll join you now in your CRAP post. I wrote a long response only to accidetally hit some unknown key on my temperamental laptop and lose it all. Oh well.



Regarding hypothyroidism, assuming it's autoimmune (Hashimoto's), my new dietician had some good news. She said there is now evidence that following a gluten-free diet will reduce and eventually eliminate the anti-thyroid antibodies, thereby halting the disease progression. It won't cure the hypothyroidism, but at least it will stop the progression to total thyroid destruction. By stabilizing the disease, I assume it might mean less fooling around with different thyroid replacement dosages.

[MBombardier]

Well! That IS good news! I had been taking Levoxyl, and got a hot node, so my GP (an arrogant woman) took me off it. She wanted to do an RI uptake, which I rejected, and then I went into denial about my thyroid because I was feeling pretty good, even though I could tell the node had gone cold again because I started gaining weight. Last spring I hit a wall, and went to my new GP who has a pretty good handle on thyroid issues and is working with me to get it medicated properly. I had also been reading a lot of Mary Shomon's stuff until I was diagnosed with CC. That's taken the priority at the moment.

Thanks, Zizzle!

[tex]

Marliss,

You might be interested in this thread which includes a poll on thyroid issues, (we have polls for all sorts of things that might be related to this disease, because so many other issues apparently are related to this disease:

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

As you can see by the poll results, we are about 8 times as likely as someone in the general population to have thyroid problems.

Incidentally, I'm one who had unexplained weight gain, even though my TSH test results were within the normal range. Fortunately, I convinced my doctor to check my Free T4, and it was below range. The synthetic hormone supplement didn't resolve my symptoms, though, so I finally switched to Armour, and I get much better results with it.

Tex

[MBombardier]

Very interesting, Tex! I, too, am on Armour, and my GP recently doubled my dose. I go back in on the 9th for a re-check.

I read on Mary Shomon's website that, contrary to what MD's will tell you, it does matter if you are fasting when your blood is taken, and it matters if you have taken your thyroid medicine that morning or not because the T3 component of the Armour only lasts for hours. Eating and taking your thyroid medication prior to the blood-drawing can give false results as to what is going on with your thyroid most of the day.

Thanks, Tex!

[tex]

Hmmmmmmmm. I always do fasting blood tests, but I've always taken my thyroid supplement before the blood draw, because, (surprise, surprise), my GP says that it doesn't matter.

I reckon I won't be taking my thyroid supplement, next time, until after the test.

Thanks for the tip. I obviously overlooked that when I was reading on that site. That may be why my test results are always in range, these days, even though my symptoms aren't completely resolved.

Tex

[starfire]

You are not alone with the MC/Thyroid/Weight issue. It is EXTREMELY difficult for me to lose weight, and it comes back on VERY easily. I never had a weight problem until I was on prednisone for 3 months. I blew up like a balloon. Even afterward, I continued to gain. I have wondered if the pred changed my metabolism somehow. I was diagnosed Hypothyroid a year or two later. I am taking synthroid and the Dr. just keeps saying my levels are fine. I don't know whether to believe it or not. I've even started taking Iodine supplements but haven't noticed any "extra energy" or anything.

I really feel for you. I know how discouraging the situation is.

Love, Shirley

[MBombardier]

Tex, here is the link to the testing time information on Mary Shomon's site:

http://thyroid.about.com/od/gettestedan ... htests.htm

Shirley, thank you so much for letting me know that you struggle with the same issue. I took kelp for a long time, thinking that was helping my thyroid. It turns out that sometimes it does, sometimes it doesn't. This link: http://thyroid.about.com/sitesearch.htm ... TopNode=99 has links to several articles about when and if iodine supplementation will help.

Have you talked with your doctor about taking Cytomel along with your Synthroid? The Cytomel will give you the T3 component. Synthroid only has T4. The natural supplements like Armour and Thyrolar have both T4 and T3. That might make just the difference your body needs. Here is a link that talks about a study published in the New England Journal of Medicine that showed that patients just taking T4 felt better with T3 supplementation. http://thyroid.about.com/cs/t3controver ... 3study.htm

Endocrinologists now say (since 2003) that normal TSH range is .3 to 3.0. http://www.aace.com/public/awareness/tam/2004/tsh.php. Even though the lab associated with my medical clinic still says that the normal range is .5 to 5.0, my GP says that he wants to see his hypothyroid patients with TSH levels under 2.5. My last test said my TSH was 3.97, which is why he doubled my dosage. Yes, I have a good doctor, and he's very sweet, too.

You might consider presenting some of this information to your doctor to see what he says. Thanks again for letting me know that you are a companion on this frustrating weight-loss journey!

[tex]

Marliss,

Your doctor is definitely on the ball. I recall reading an article 5 or 6 years ago, stating that the current recommended range for TSH, as proposed by the American Association of Clinical Endocrinologists, should be 0.3 to 2.5. The problem appears to be the stupid lab administrators. The lab my doctor uses shows a "normal" range of 0.34 to 5.6 uIU/mL. On my last test, my TSH was fine, at 1.105, but my free T4 continues to remain at the bottom end of the "normal" range, at 0.61, compared with a normal range of 0.58 to 1.64 ng/dL. Of course, this the result after taking my daily supplement about an hour or two before the blood draw.

Now, IMO the "normal" range for TSH is indeed pretty broad, for various individuals. The problem is, if my normal TSH value should be 0.5, and my test result turns out to be 5.6, then the test shows that my level is fine, but in reality, I am hypothyroid. Doctors have no guidelines to allow for our "normal" position within that range, (because no one ever has a benchmark test done, before they start having thyroid problems). and so most doctors just assume that anything within that range is OK.

Personally, I believe that anyone being treated for hypothyroidism, should use a TSH goal of somewhere in the range of 0.5 to 1.0 uIU/mL.

Thanks for the link.

Tex

[MBombardier]

Tex, you inspired me to call the lab and make sure my test (which I will do tomorrow) is for both TSH and free T4. It is. Thanks! In May my free T4 was .93, but that was totally unmedicated, and my TSH at the time was 9.43. So I will very interested to see the results of these tests.

Mary Shomon's site says that T4 under .7 is indicative of hypothyroidism, and my lab uses .75 as the low end. Hmm... Wonder where your lab got the .58 value? Also, I have seen mentioned in a couple of places that low TSH and low T4 should prompt the doctor to look into both pituitary and hypothalamus function.

[starfire]

Hi Marliss,

I started to question my doctor recently about the range his lab uses. I just asked which range they use. He spouted off such a long song and dance that I just gave up and he never answered my question at all.

I'll be changing doctors (provided I can find one that will accept new medicare patients) after I move back to Pa but it will be a few months since I just saw the doctor here in September.

Thanks for the advice. I'll try to pin down the next one better and I'll take a look at the links you suggested.

Love, Shirley

[MBombardier]

I had not spent much time with doctors until the last six months. I just wasn't sick, and then I had a couple of bad GP's at the medical clinic I use. In 2003, I had an attack of appendicitis with every symptom except nausea. My GP at the time told me it wasn't appendicitis because I was not nauseated. Two months later I had another attack and waited until the nausea hit before I went to the emergency room. At the emergency room they thought I was having a gall bladder attack until they did the CT scan several hours later and then everyone ran around like crazy people to get me into surgery before my appendix ruptured.

My last GP told me that I was obese and that I needed to go on a 1200-calorie diet and put a scale right beside the fridge so I could weigh myself when I was tempted to eat something I shouldn't. Yeah, that'll work. The weight will fall right off, yes, ma'am. She got impatient with me when I asked for some clarification about my thyroid issue.

I hope that you will quickly find a kind, caring doctor after you move. I know the issues with medicare--a friend had to spend a lot of time trying to find a new doctor for her parents when they moved up here so she could take care of them. They are Korean, so there were language issues as well. But she was finally successful, and I wish you every success, too.

[tex]

Also, I have seen mentioned in a couple of places that low TSH and low T4 should prompt the doctor to look into both pituitary and hypothalamus function.

I had those values checked a couple of years ago, (and the results were normal), but my TSH was running about mid-range, at the time, and a lot of things have happened since then. If I get low TSH and Free T4 results again next time, I hope I can remember to ask that the HPA axis be checked, again. Thanks for the reminder.

Tex

[MBombardier]

Well, here are the results of my TSH and free T4 testing being done while fasting and before I took my thyroid medicine. It had actually been about 29 hours since I had taken my Armour and probably 16-17 hours since I had eaten.

My free T4 was .83, down .10 from May when it was .93 totally unmedicated. My TSH was 3.80, down .17 from when it was tested last time, probably in August. This was after doubling my dose about six weeks ago. That tells me that the 3.97 in August was a depressed reading because I had taken my thyroid medicine that morning, and had probably eaten.

My doctor just doubled my dose again. He's worried about sucking calcium out of my bones and an irregular heartbeat, but he's good at letting patients be in control of their own health as much as possible. He just popped his eyes at me when I told him I was no longer taking the Apriso but working on controlling my symptoms with a GF diet.

[JoAnn]

Hi Marliss, I'm a little late reporting in on this. I am one who also became hypothyroid along with mc and spent a year in hell trying to figure out what was doing what to me. I have ended up with a wonderful nurse practitioner who can out-treat any doctor when it comes to mc and thyroid issues. When all this started, I gained 20lbs and then lost 10lbs with mc, but I never have become really thin from the mc. If fact I'm also in the minority that I would love to lose a few pounds but have never had that side effect from the mc. I guess the thyroid stuff trumps the mc stuff in some of us. Regarding the thyroid, I looked up my last test last Aug. My tsh was 1.6, T4 free (direct) 1.17, and T3, free serum 3.2. My pcp likes to have optimal levels and still wants all these numbers improved even though they are in range. When I was first being treated I went through several thyroid meds and ended up in the emergency room while on Armour. My heart rate went through the roof. Even synthroid is too much for me. I am in the minority where I feel the best taking generic levothyroxine (t4) and a generic liothryronine (t3). My doses are quite small, but my body really goes nuts if I get too much or too little. I take 50mcg of the levo and 5mcg of the lio. She is having me add a dose on Sundays of the levo. I tried it during Sept. and felt like my heart was pounding some nights, so I quit. Now I have a little time off from school and I'm introducing it more slowly to see what happens. Just know you are not the only one battling mc along with thryroid and all the issues it adds to the mix. Take care, JoAnn