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Old 07-27-2002, 06:47 AM   #1
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Post Multi-nodular goiter treatment? TSH 0.

I have completed a FNAB at Shands' Hospital in Gainesville, FL - negative for cancer. Multinodular goiter shows evidence of old nodules/dried up old blood supply/ new functioning nodules/ and probably has been there 30 years more or less. Right side is where the 4 cm multi-hodular growth is... Left side revealed tiny nodules on second ultrasound...

My endocronologist is Ernest Mazzaferri, world renowned expert of thyroid disorders.. He practices one clinic per week, each Wed, at University of FLorida Shands Complex.

I completed my uptake 123 this week, am waiting for the report.

Because I am a lyric soprano, a thyroidectomy is not an option, as there is a great possibility the vocal nerves high sopranos use for singing will be permanently damaged.

The 3 and 4 are within the normal range. The TSH was .0008 (almost 0) and Dr. M. believes that's because the nodule itself is producing the hormone...

Has anyone else experienced this problem? I have heard there is a dose of iodine I might be able to take in a couple of doses to arrest this nodule but its efficacy is debatable?

I am overweight by 50 lb, and have been overweight all my life unless I went on very low cal diets, but usually the weight came back... I have been at the same weight within 5 lb one way or the other for over 5 years now... Although I am overweight, I may in fact be hyperthyroid.. or subclinically hyperthyroid...?
Not hypothyroid...

[This message has been edited by Cabbage (edited 07-27-2002).]

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Old 08-03-2002, 07:37 AM   #2
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Well the results of my 123 uptake/scan came back and the doctor is in fact recommending 131 radioactive iodine treatment.

They have warned me that I may experience periods of discomfort until we get it the desired result.

It has been explained to me that they will not give me synthroid immediately because my TSH is at 0. BTW, I have had a subsequent blood work showing higher levels of T3 and T4 now.

The scan showed "hot" nodules. Multi-nodular toxic goiter. Although the right side is large and probably can't get much bigger, the left side has two tiny ones that have suspiciously grown over the past couple of months since the initial spot was located on a CT as an ancillary finding.

Now what I have are two additional spots on the left side (that we thought was clear) that appear to want to "take over".

I don't understand how this works except that I think I am correct- many years ago I may have had a silent nodule when all this began, but over the course of time, left untreated, I have multiple nodules, at least one of them is HOT.

When I took the uptake 123 I thought it was interesting that they also measured how much of the iodine travelled to my knee area! They somehow make a calculation of how much is actually being used in the thyroid by subtracting this measurement...

Obviously a % of the treatments go outside of the thyroid; yet I trust Dr Mazzaferri completely in this matter and he said this is my only option short of a thyroidectomy which I have opted against.

When I start to feel "out of sorts" I am to report to a lab ASAP for a blood draw. They will get my readings and introduce synthroid. This is the tricky part- introducing synthroid while my thyroid is dieing off-
and I will be out of whack sometimes.

I am told that most people can expect normalcy within 4 months and some people have less problems adjusting than others. But if I'm not up to it, I just won't go into my office. Luckily I have a sick plan at work that will pay me up to 480 hrs of leave in situations like this.

Old 08-03-2002, 04:57 PM   #3
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Glad to hear your work is flexible, so you can take the time to heal properly. Good luck with the treatment, and do let us know what's happening. We're always here.

Old 08-13-2002, 06:52 PM   #4
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I had my 131 radiation 8/8/02. A different doctor from the nuclear meds dept of Shands gave me the explanation and it was different than the one I had received from my endocronologist. Well, let's say it left more questions, yet a more positive feeling somehow.

Dr Drane (of the nuclear meds dept) advised me that I have Plummer's disease, a glandular adenoma with a functioning hot nodule , often referred to as toxic nodular goiter. I was given the max dosage of 29.9 mci. He explained that since my functioning nodule is large there is a possibility it will be resistent, but there is a solid chance (over 80%) that no more 131's will be needed.

What was interesting is that he suggested it is highly possible the radiation will kill the nodule and jumpstart my thyroid to work again. My endocronologist, Dr Mazzaferri, advised me it is highly likely the 131 treatment will kill off the entire gland and I would start taking synthroid at some point.

Dr Drane believes I will be relatively sympton free for the first 6-8 weeks (my first scheduled blood test to see where I'm at).

Dr M.'s staff advises that it is very possible I will have good days and bad days over the next 4 months. Or at least good moments vs bad.

It appeared to me that the nuclear meds dept is in some kind of "power struggle" with endocronology. Dr Drane stated he doesn't believe in treating test results unless it's cancer. He prefers to treat people having symptoms, and leaving other thyroid issues to monitor ... However, he stated with the size of my nodule, future problems are emminent so he agreed with Dr M to treat me.

They give you a brochure explaining how you aren't supposed to kiss or have sex etc for a few days after taking the pill. They tell you to flush the toilet twice after you go and to wash all the time, to be very conscious of your hygiene. These things freaked me out, I hadn't considered that I could "contaminate" anyone. Yet, it's highly unlikely I have, since you have to be "thisclose" and the radiation lasts a couple seconds tops... Still the information is disconcerting ...

Since I've taken the medicine (5 days ago) I feel no difference yet.. I have had leg cramps in both legs and feet for a couple minutes shoot up both sides at once, which seemed very odd since I hadn't exercised or exerted myself. My throat is dry, I want to drink a lot.

If somehow this treatment can kill off the nodule and get my thyroid working again without synthroid, I'll be very relieved.

[This message has been edited by Cabbage (edited 08-13-2002).]

Old 08-14-2002, 09:07 AM   #5
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Hi Cabbage. Although you're doing the long-term RAI ablation therapy rather than in-hospital post-surgical treatment, you may still want to read the Information Archive post (Page 2, 5/1/02) about "What to Expect from RAI Ablation."

Your mouth is probably dry because the radiation goes to the salivary glands. Although it's already been several days, it still can't hurt to eat sour things and sour hard candies to keep your mouth moist and flush your salivary glands a bit. Drink tons of water to flush your other organs.

You may feel nauseous at some point, and eating or drinking ginger foods can help (candied ginger, ginger tea, sushi ginger, ginger beer, etc.) Ginger ale isn't much help because there isn't actually any real ginger in it.

A homeopathic remedy of Phosphorus can also help the nausea, but too much can make you constipated, so you'd probably only want to take it for a week or so. You can read about how to take it from the Info Archive (Page 1, 9/10/01).

The radiation can also make you feel tired and achy, so don't push yourself too hard right now.

I suppose either of the doctors' scenarios is possible, but it would be great if most of the iodine went to your Hot nodule without damaging the gland.

Good luck with your treatment.

[This message has been edited by ArtfulD (edited 08-14-2002).]

Old 08-31-2002, 07:45 AM   #6
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3 weeks after receiving the radioactive capsule, I am doing well. Good news early was to be expected from most accounts, because the long-term symptoms haven't begun yet. And I'm not on synthroid .... yet.

In 3 more weeks I have my first blood test since the treatment to determine where my levels currently are.

Symptoms I am having that are very tolerable:

1) Very occasional legpain. I read a couple threads about others experiencing leg pain and my leg pain is temporary, and almost identical to the cramping I had years ago while pregnant. My foot, calf, and/or thigh may cramp up. Drinking gatorade and wearing supportive shoes (even in bed occasionally) stops the cramping. It's happened maybe once a week lately.

2) Ears ringing.. Rare, but happens. Feels like you're listening to something in a tunnel even, but very brief. Part of the balancing act I'm hoping, and nothing else?

3) Sleep deprivation - Actually I have MORE ENERGY at this point than I had before taking the pill... My heart beats slightly faster. In the early morning hours I do not want to stay in bed, but want to be active and productive. This is actually a change from before the radiation. Before I was much more tired.

3) Weight stable (within a couple lbs either way) but has been stable for over 5 years. I have been overweight a long time, but never experienced large gains or losses like others on the board.

4) Appetite slighly suppressed. Cravings for salty foods and shelled seafish. (Is this psychological?).
I was deprived of having these for weeks before the treatment.

5) Emotional roller-coastering similar to PMSing I suppose, but not to the point of tears. I feel pretty good most days most of the time.

6) I attribute "mixing" up the digits when dialing out on the phone or getting directions mixed up to just "getting older". I get mad at myself for mixing up phone digits or directions (something that never used to happen). I suppose it is possible that the thyroid is causing this, but more likely, it's just a case for getting older.

7) I cut my shoulder-length hair into a very nice layered shorter look and changed the color some. I figured I wanted something lighter and freer-feeling, and all the compliments from friends really help. If you're feeling rather hum-drum over your thyroid experience, a new do and a pedicure work wonders

I'll update more in the next weeks. This is a great board. I tend to be a worry-wart over medical things and this board has sincerely helped me settle down and realize that over time I am going to be leveled out.

Old 08-31-2002, 06:52 PM   #7
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Hi cabbage. Glad you checked sound terrific! I'm glad that your symptoms are tolerable and that things are going relatively well. Here are a few suggestions that may help some of them:

Leg pain is sometimes associated with hypothyroidism but is also associated with dehydration and lack of minerals (particularly magnesium). Because you are probably on a low iodine diet for your treatment, your body may be using up other electrolytes quickly. The Gatorade is a great idea, and you may also want to consider taking a Magnesium supplement.

If you're already taking Calcium, then you'll need a dose of Magnesium that's about 1/2 of your Calcium milligrams. But you can always slowly increase your Magnesium until your stools become soft and then back down some for your "stasis" dose.

The Ringing Ears, Palpitations, Suppressed Appetite, Mood Swings may have to do with Hypothyroidism (which would be great news, as it suggests that your single RAI treatment has sufficiently knocked off the Hot Nodules and you're no longer Hyper). The mental confusion may also be related to this. Once you're allowed to have Iodine in your diet again, you may want to consider taking Maca. It can help balance many of these symptoms.

The craving for salty and seafood may or may not be psychosomatic, but it makes sense that the body would crave iodine while it's being deprived. (I know I certainly do when I go Iodine-free before a scan.)

Glad to hear about the new 'do. I've been considering the same, but don't yet have the nerve. Had short hair most of my life, but it's been really long for about 15 years and I'm not ready to leave it behind yet. However, it's definitely lost a lot of its thickness (which I attribute to the handfuls I lose when I shower). I know this would be less noticeable and probably minimized if I cut it.

Keep us informed.

Old 10-02-2002, 04:01 PM   #8
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Update on treatment.

I had my first blood test since the radiation and the results were:

TSH now 7.6 (before they were 0)
T3 2.3 (low end of normal)
T4 0.9 (obviously very low)

My endo says this is what he expected and the treatment is "Working".

I now start taking 112 micrograms of synthroid for 6 wks and then will have another blood test.

I am curious to find out how I will feel taking synthroid but my endo "thinks" I will feel "Better" than I do now. I haven't been feeling "horrible". I've actually had lots of energy, although occasionally I get palpitations and or leg cramps or feelings of butterflies...

What is a microgram in relation to a milligram?

Old 10-13-2002, 07:13 PM   #9
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Hi Cabbage. I'm so glad to hear that your first rounf of I-131 worked for you. Your TSH is sufficiently high (and your T3 and T4 sufficiently low) that it appears the RAI killed or slowed down the hot nodules. Your levels indicate that you are now HYPOthyroid -- the desired result of this treatment.

Good for your doctor to prescribe some thyroid meds now to help bring your levels to a more comfortable range for you! Most adult women feel best when their TSH is at or below 1.0, and their Free T3 and Free T4 are in the middle of their reference ranges. Take note of what your body is doing and see how/if this matches your needs as well.

Like many other medications, Synthroid dosages are measured in micrograms instead of milligrams. One microgram is 1/1000 of one milligram; a dosage of 125 micrograms can also be described as 0.125 milligrams.

Synthroid and other T4 meds typically take 4-6 weeks to be completely assimilated in the body, so don't be surprised if you have a fluctuation of symptoms during that time. Your doc will probably want to re-test your bloods every 2-3 months, comparing those results with how you're feeling, and adjusting your dosage until you feel more normal.

Keep us informed.

Old 06-18-2003, 06:38 PM   #10
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Update on my progress! Time sure has flown by! Almost a year has passed since my thyroid problem was discovered.
In the process we have moved from Florida to Maryland and I'm doing well.

Since 10/02 I have been on 112 mcg of synthroid and doing very well. In 1/03 my bloodwork was retested and I was doing well. Last week I had my bloodwork retaken and it is necessary to increase my dosage of synthroid now to 150 mcg.

A family practice doctor is monitoring my thyroid problem. There is only one endo in this area who is backed up for months, and it is better that her services be available for people who are in dire straits. I've been one of the lucky ones.

I'm an advocate of synthroid based on my own personal experience and I'm glad my first doctor started me at 112 now. It kicked in right away and proved to be a good choice.

I changed hair products when we moved to MD, believing it was more a case of water differences that was making my hair limp than my thyroid. My hair is very healthy now.

I power walk twice a week, walk my dog 1-2 times nearly every day and Jazzercise 2 times per week. I have the energy I used to have. My weight has been very stable as my first doctor predicted it would be. A pound up or down here or there, but after an ititial weight loss of 11 lb, nothing remarkable. I am not "blaming" my excess poundage on my thyroid, but on a combination of many things.

My good cholesterol has risen markedly! My total cholesterol has reduced! My sugar (never a problem) is still stable at 88 and my BP was 115-75.

I still get the "you really should try to lose 30 lb this year" speech from the new doctor, and maybe I'll lose a few, but I don't put the pressure on myself. I eat good foods and when I'm hungry, I eat bad foods occasionally, and I exercise and stay busy. I've come to a place where I have a comfort level and I feel good, and getting my thyroid problem fixed has to be a big part of this.

I did learn something very disturbing a couple months ago.
As I was perusing my medical records from a few FL doctors that had been forwarded to my new doctor, I started looking at the bloodwork results. What I noticed was at least as far back as 1998 my TSH/T3/T4 were not within normal range, and no doctor ever mentioned it to me until 2002.

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