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Thyroid Concerns

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Old 12-22-2012, 12:01 PM   #1
Join Date: Dec 2012
Location: Arizona
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ggmtscw HB User
Thyroid Concerns

Hi, new to HealthBoards. Looks like a great community. Happy Holidays to all.

55 year old white male 6'2" 250 lb. Taking various cholesterol and blood pressure medications, plus one very special medication: amiodarone.

My situation:

Routine thyroid blood test by cardiologist regarding Crestor, etc. in Aug '12 reveals TSH 0.02, T4 1.9. T3 OK at 4.6 (little high): so, hyperthyroid. Primary care physician orders ultrasound and comes back with slightly enlarged right lobe and two nonspecific nodules, larger being .9 cm. PCP sends me to Endocrinologist - first appointment is early September. She looks over the paperwork and puts me on methimazole 10mg daily, says they don't normally biopsy anything under 1 cm and says I can't do an iodine uptake because I've been on amiodarone (for four years), which she says is likely the underlying cause of the problem.

We set a followup for three months or so which happened last Thursday (1/20). I stopped taking amiodarone immediately in September. No ill effects thus far. Result at followup is that I'm now hypothyroid, so methimazole is reduced to 5 mg daily. New ultrasound shows larger nodule is now 1.2 cm ("slightly" irregular). Biopsy is now scheduled for Jan 4 '13.

I'm having some intermittent neck pain on the right side (the affected lobe) which extends to my ear. Nothing unbearable, but irritating and concerning to me. No difficulty swallowing, but I can feel an ever-so-slight pressure when I'm laying down. Nodule is not visible: I can't even find it by palpating. Right side of neck seems slightly larger than left.

Endocrinologist says there is really nothing to worry about and quotes the standard percentages for cancer, which by now I'm quite familiar with having scoured the web for the last few weeks and months. Also purchased and read two e-books on thyroid disease and cancer. She says she's just eliminating one possibility, which sounds perfectly reasonable and routine to me.

One odd thing here is that I've noticed almost no difference in my general sense of energy or well-being in going from hyperthyroid to hypothyroid. This does not jibe with what I've read, which is that there are usually substantial effects from either.

Although I know the basic statistics favor me, I'm still concerned. It seems like growth from 0.9 to 1.2 cm in three months' time is significant. It seems like between the methimazole and going off amiodarone I should have seen some improvement. The onset of the mild neck pain is also concerning. I'm patiently waiting now for Jan 4. The procedure itself doesn't bother me, and though I hear it's a bit uncomfortable, I've had plenty of procedures I'm sure are comparable or worse and survived. I guess I'm nervous about the outcome. It's probably the cynic in me saying I'll be the oddball in the statistics and that the endocrinologist is just trying to spare me the worry prior to finding that out.

I'm not even sure why I'm posting here except I suppose in the hope that someone has a similar story that turned out alright. In any event, I thank everyone for being here and supporting those, like me, who come here. This looks like a great place.

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Old 12-27-2012, 05:41 PM   #2
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Re: Thyroid Concerns

Arizona ggmtscw Dec 27, 2012

Hello GG. Welcome to the wild and wacky world of things thyroid. I have not been thru the trials that you have, but I have been doing a lot of research due to my hypo condition. When I was searching about Reverse T3 (RT3) I came across a paper about amiodarone and thyroid function (see #1 below). I suggest that you read it if you haven't already done so.

The upshot of the paper is that amiodarone contains a lot of iodine and thus wreaks havoc with your production of thyroid hormone and the functioning of thyroid hormones in your cells.

It is interesting that you say you do not feel particularly hyper or hypo. You say your FT3 was a little high at 4.6. In fact that is a lot high when you consider that median FT3 for the normal population is 3.1. You may not have felt hyper because, as this paper indicates, (1) the amiodarone itself "inhibits thyroid hormone entry into peripheral tissues" and (2) the amiodarone results in reverse T3 (RT3) levels 150% to 200% of normal. RT3 blocks the action of T3 in your cells. So your blood level of FT3 was high but these two effects could have counteracted the T3 so much that you did not feel hyper and in fact could have pushed you a little to the hypo side. Now you say you are hypo, but you do not quote any labs, so it might be the case that you are only a little bit hypo and not much different from before.

Anyway it is important for you to remember that your RT3 could be screwed-up and you want to make sure it gets tested as you go along. It will return to normal if your thyroid does not produce excessive T4 and/or you do not take excessive doses of T4. It really is unknown how long the effect of the RT3 lingers.

One of the major problems you (and everyone else with thyroid problems) will face, is that doctors (including endocrinologists) are not very knowledgeable on things thyroid.

First, they do not get the lab tests required. Most will get TSH or maybe TSH and FT4. But really you should get TSH, FT4, FT3 and RT3 if you want to get as complete picture as possible.

Second, they don't know how to interpret the lab results. They think that the lab reference ranges represent "normal". That is not true. The reference ranges represent the 2.5 and 97.5 percentiles. I personally think that median levels represent normal. And medians vary by age and gender. You can find medians for men in papers #2 and #3.

Third, a lot of doctors do not know how to treat hypothyroidism. At school they learned that treating with T4 was the recommended way. However there is now much literature indicating that it is far better to treat with a combination of T4 plus T3; paper #2 explains why this is so.

Lastly, I highly recommend that you read paper #3. Yes, it says "elderly" men in the title, but the numbers are not much different for a little younger men. This is the best paper I have found that really shows you where you should target for your thyroid hormone levels and it is the only one I found showing the importance of RT3.

If you read thru these papers you will know more about hypothyroidism than 90% of doctors. Best of luck to you...

Amiodarone-induced thyroid dysfunction in clinical practice.

Levothyroxine monotherapy cannot guarantee euthyroidism in all athyreotic patients.
Gullo D, Latina A, Frasca F, Le Moli R, Pellegriti G, Vigneri R."

Thyroid Hormone Concentrations, Disease, Physical Function, and Mortality in Elderly Men.
Annewieke W. van den Beld, Theo J. Visser, Richard A. Feelders, Diederick E. Grobbee and Steven W. J. Lamberts

Old 12-28-2012, 05:42 AM   #3
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Re: Thyroid Concerns

I"m going to address your nodule issue, but First, if this endo. started treating the "hyperthyroidism"---did she test your antibodies---were they positive for graves?

Second, they of course biopsy nodules .9cm---isn't that close enough to 1 cm????? Ridiculous that she didn't do her due diligence and get a simple needle biopsy---my endo has an ultrasound machine and does them in his office the first time he meets you if he sees a nodule. I don't know what she was waiting for no matter what the "statistics"

You can/should have an ENT/thyroid surgeon from a really great teaching hospital working with you now---I would go to one with the biopsy results and go from there---there are also places you can send thyroid pathologies for second opinions which you can consider. Even though the "statistics" are good, a male of your age with a nodule has to be taken very seriously---even though they rarely get nodules/cancer, if a male of your age has a nodule, it's slightly more likely to be cancer.

That being said, I had a nodule that was cancer 8 years ago, and thankfully, all has been good and fine. But I think you should go through the steps with a surgeon who has a lot of thyroid experience (does many surgeries a week) because often the results are inconclusive and you need to decide from there with a good quality doctor.

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