Multinodular Goiter w/Dominant Hyperfunctioning (Hot) Nodule...Help

[Mari62]

I've had the Ultrasound done, and the uptake scan and my next step it that I'm being referred to an Endocrinologist. First off, I'm a bit confused, my recent bloodwork (Oct 07) shows my T4 at 13.4, my TSH at 0.008, and my Thyroxine (T4) at 1.78, which according to everything I've read supports a diagnosis of hyperactive thyroid, however, over the past 2 years, I've gained 150+ lbs. When I first changed doctors, my new doctor put me into a gastric bypass class to assist in losing the weight, leading up to surgery if necessary. How could I have gained weight with a hyperfunctioning thyroid? When the doctor first told me of the diagnosis, I looked at her and said, "Doc, I'm 5'6", and 290 lbs", and she said, "Oh, that's right", so I think the diagnosis caught her off guard as well. She tells me the next step will probably be radiation to kill the thyroid, but I'm looking into holistic meds that might help prior to exploring anything so drastic...HELP...can anyone explain the weight gain to me in a way that might make sense? I read on the web, not long ago, that only about 15% of folks with hyperactive thyroid gain weight, but that was all it said, no explanation. Can anyone break this down for me? Any and all information, is as always, appreciated in advance.

[Mark Lupo, M.D.]

The low TSH suggests hyper -- and the elevated TT4 (presuming you are not on birth control pill) supports this and suggests that it is not a pituitary problem causing the low TSH.

The weight gain is likely independent of the thyroid.  There are some hyper patients who gain weight(theory is that appetite increases more than the metabolism), but not to 290 pounds - so try to think of these as separate (but both frustrating) problems.

Would usually not jump to radioactive I-131 treatment for this, there are medications like tapazole that may be helpful.

[Mari62]

So, I might be ok to continue with the Bariatric class? I'm not on birth control, and have actually had a tubal 14 years ago, so no worry there.  My doctor tells me she believed the weight problem to originally be that I wasn't eating enough (no breakfast, lunch at 2:30, usually fast food at work, and dinner at 7:00, usually a Lean Cuisine meal),  and that what I was eating was being retained by my body (basically, based on my daily food intake, I was starving myself), so my system was compensating by holding on to everything. I will talk to my primary to see if it's ok to finish my classes, and follow through with the Endo as soon as the referral goes through.

Might the tapazole make me gain additional weight? I've lost 13 lbs in the class, by learning what I can and cannot eat leading up to surgery, and "if" possible, I would love to continue losing weight.

Please advise, and thanks.

[sonieb33]

For the past 18 years I’ve had a multinodular goiter with a hyperfunctioning hot nodule. I have the same exact issue with my weight, although not quite so bad. I’m 5’5 - eighteen years ago when I was first diagnosed I weighed 115 lbs. but ever since it has consistently gone up regardless of diets and exercise. Right now it is a constant struggle to stay below 160 lbs...it would be impossible for me to tell here all the things I've done in the past 18 years to try to stop the constant weight gain; you'll have to just take my word for it - I've tried just about every healthy method to lose weight and try to keep it off. No matter what I do I cannot lose more than 5 lbs (and then it's nearly impossible to KEEP off). In those 18 years I've gone through periods of extreme activity (every day for years: I was a professional carpenter for 2 years) and inactivity (every day for years: college) but both are exactly the same....nothing changes my weight gradually goes up and up no matter what I do.

Everything I’ve ever read, heard or been told about my condition says that I SHOULD be LOSING weight. This is clearly NOT what is happening!!

I have all of the other symptoms hyperthyroid: my hair thins periodically, my fingernails have notches in the middle where the nail seems to be eroding away, my heart races, etc… but my weight is exactly the OPPOSITE of the way it's supposed to be.

Every endo I have ever been to simply ignores this discrepancy...or pretends not to notice OR blames it on some presumed (assumed) OTHER issue such as "increased appetite" leading to excessive overeating and/or lack of exercise, although, in the past 18 years I've gone through lengthy periods of my life where neither of these things could possibly be the cause - because they simply were not true - such as 2 years working in a very physical trade full time.

The very first endo office that I went to gave me a booklet which explained some basic facts about the thyroid and hyperthyroidism. Although I no longer have this booklet - in the section which explained my particular condition I clearly remember it saying something along the lines of a "backlash" effect. I cannot remember the word-for-word but I understood it at the time to mean that the nodule and the actual thyroid seem to kind of battle back and forth and the outcome is that although you're hyper-thyroid you are also hypo-thyroid due to the "backlash" type of effect.  

I would give my eye teeth to find that booklet since I've never seen or heard anything along those lines since. I brought the topic up with one endo I was going to and I got into such an argument with him I refused to go back to him after that.
No one seems to be willing to admit that something doesn't seem to add up...and that maybe there's something going on which they are unaware of with this condition.

I just keep waiting for someone to "discover" the cause of my weight problems (or for my hot nodule to work FOR me for once!), until then I'm dealing with the symptoms and hoping that I can keep my actual thyroid as long as I possibly can since insurance now days is not what it used to be. I don't want to be dependent on a medication which someday I may not be able to buy because I don't have coverage.

Good luck.

Sonieb33

[Mari62]

Thank you for the information you shared. I too feel like no one is listening. The Endo says the same things as the doc here, "It's a separate issue", I say, then let's find out what the issue is....but no, it's either beyond their scope, (in which case I say, find someone who can help), or, they think as everyother doctor thinks about overweight people, (we just eat too much)...uggggg. My Endo says that about 5 percent of folks gain weight, but I've read a figure more like 15 percent, so you'd think there'd be more out there in the way of information. I am on Tapazole now, 10mg 2x a day, and a beta blocker 20mg 2 x a day, and if I can get my thyroid back into a decent zone, I will be able to continue with my bariatric surgery according to the Endo and my primary, so I am working again with my dietician who teaches the bariatric class. Thanks again for your post, it lets me know I'm not going crazy, and that there are others in this boat with me...take care.