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Old 05-25-2007, 03:09 AM   #1
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Thyroid uptake scan results and advice needed!

Hello,

I have posted before. A short recap of my situtation:

I have thyroid nodules, FNA biopsy indicates Hashimotos. Nodules benign.
Blood tests have always been "normal" but on the hyper side. Last results, March-07:

TSH : .5 (ref .35-4.94)
Free T3 : 3.33 (ref 1.71 - 3.71)
Free T4 : 1.10 (ref .70-1.48)

I have had some annoying symptoms like tremors, muscle twitching, nervousness etc.

I just had an uptake scan today. They will forward the results to my Endo, whom I will see in about 3 weeks. The doc who did the scan told me that the lower right lobe is hot or warm and could be explaining what is going on. I got a very quick recap from him and I'm sure I will find out more when I see the Endo. So, it seems one of the nodules is producing hormone.

I know the Endo said if we found this we would discuss surgery. However, I have been reading on the internet about injecting Ethanol into the nodule which I guess kills it and it stops producing hormone. Has anyone ever here ever done this? I am in Europe and I read this is offered more in Europe so I hope that might be an option. If I do surgery, should I expect him to suggest I remove all of my thyroid or just that part? I do supposedly have Hashimotos, so doesn't that mean my thyroid will die anyway? And, does anyone know what the liklihood is one of the other nodules I have could turn hot too (if I had surgery and they left part of the thryroid)? I would not like to have more than 1 surgery if possible.

Thanks a lot! I guess I am somewhat happy as this could explain why I've been feeling like I have.


 
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Old 05-25-2007, 04:43 AM   #2
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Re: Thyroid uptake scan results and advice needed!

Hi cougars,

I'm so glad you finally have an explanation. I can't answer your specific questions cause I haven't looked it up and am not really too familiar with ethanol injections and such but I was curious. Is the entire lower portion of the right lobe hot or is it specifically a hot nodule? Or did he maybe mention toxic multinodular goiter?

I do believe if you will read and look around a bit, hashi's antibodies don't always kill the thyroid. You have a pretty complicated situation here but I think once you have all the information together, a good treatment plan can be worked out.

How's it going and how have you been feeling lately? If my memory serves me, you've been taking betas? Are they helping?

Helen

 
Old 05-25-2007, 05:40 AM   #3
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Re: Thyroid uptake scan results and advice needed!

Hi there, Helen,

The guy showed me the picture very quickly and I saw the two lobes and everything looked more or less the same except in the bottom right lobe there was a bright yellow spot/circle area. He didn't say if it was the nodule or not, though I do think one of my large nodules is in the lower right lobe, if I'm not mistaken. I am in France, so maybe I didn't understand what he said. He did say this could explain what has been going on but obviously was leaving the in depth explanation to the Endo. I'm not sure I had the type of scans others have written about. I was injected with Iodine 123 and then 1 hour later had a scan that took about 5-10 min. That's it. He said there are no percentages given when you use Iodine 123.

Thanks for asking how I have been feeling. I actually haven't taken very many betas lately. I have been feeling pretty good most of the time. It seems the past few days I have been more hyper again. I am curious to see what the Endo says. He implied at my last appointment that surgery would be recommended if there was a hot nodule. I guess you can't leave that alone, right? I don't always feel great, but I am worried I might feel worse if they mess around with stuff. And, I have read that these nodules grow and then can cause even more problems as they release more hormones.

What about you? What is going on with all of the water rentention you had? Have you found out any more with regard to your situation?

Best,

Cougars

 
Old 05-25-2007, 06:14 AM   #4
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Re: Thyroid uptake scan results and advice needed!

That's strange. All 4 of my scans and uptakes, with percentages, were done with I-123 but I took pills for em instead of an injection. I went back 6 and 24 hours later. Wonder if you just had a tiny bit of I-123? Maybe they do it different over there. Mine weren't in color either just shades of black. It's also been quite a few years since I had the last one done.

Some people complain of an increase in hyper symptoms after a scan. Probably cause of the extra iodine. Also I find regardless of things such as that, symptoms do have a tendency to wax and wain on their own.

But, you are right. It's not a good idea to ignore a hot nodule. Long term hyper really is not much fun. I think you will have several treatment options and since you seem pretty well in control right now, you have time to pick what you feel is best for you.

Me? Same ole, same ole. Got an appointment with the pcp on the 31st which I've been holding in my clutches for the last month. Got a call last week from the nurse that the 24 hour urine creatine clearance was ok but she didn't provide me the exact results. Said that because of this one test, there was absolutely nothing wrong with me. When I asked what I was supposed to do about the edema, she told me to force fluids and continue taking the lasix and call if things got worse. Diagnosis: "You obviously are not peeing enough".

 
Old 05-25-2007, 06:28 AM   #5
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Re: Thyroid uptake scan results and advice needed!

Hi,

You must be getting really frustrated. There has got to be a reason you are retaining so much water! On the one hand, it is good to hear you don't have some major problem, but I think you'd like to figure this out now. I hope you have some luck with your PCP. Keep us posted.

Yeah, I have no idea what they did today. I will wait to hear what the Endo says. Could just part of my thyroid (and not just a nodule) be hot? In fact, I don't know if is is 'hot' or 'warm' or what. He didn't say. Just pointed to it and said this could be causing the problems. I didn't know you could have Hashi's and hot nodules at the same time. I suppose that could be true and if we take away this nodule, maybe the rest of my thyroid isn't working right and I will end up hypo? Who knows. What a guessing game it all is!

Good luck and I will check for your updates!

Last edited by Administrator; 06-25-2011 at 09:52 PM.

 
Old 05-25-2007, 07:43 AM   #6
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Re: Thyroid uptake scan results and advice needed!

Who me? Frustrated? Whatever gave you that impression? lol I was actually being a tad bit sarcastic with their interpretation of one test result which is semi-specific for diagnosing severe kidney failure but is not always accurate and has many known flaws if it is used solely by itself to look for anything else. They have not ruled out anything cause they haven't bothered to look. Edema is a symptom for a lot of different things. Hell, if they'd just look at my fingernails or bother to examine me or even take a quick peek at the edema, I think they might see that there really could be something wrong. I just can't believe, with my history that it's being ignored. I've never been one to go in there with a minor complaint. For me, it takes something like pneumonia to get me anywhere near them. Sorry. Rant over.

Would really need to read the report on the scan and also the report on the fna to come up with any type of conclusion. I'm really not sure if only part of a thyroid can be hot without the benefit of some type of overactive nodule or something there. It would also be interesting to know if the rest of the thyroid is "cold" or normal. Too many unknowns to make any sense of it yet. Please for sure let me know what the endo says. I like hearing the answers to some of these puzzles.

Oh, did I tell you we found a couple more late morels but that was it. The freeze really ruined it this year and we've had so little rain that everything got kind of messed up. We'll keep our fingers crossed for a bumper crop next year.

 
Old 05-25-2007, 08:10 AM   #7
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Re: Thyroid uptake scan results and advice needed!

ethanol injections are used for cystic nodules, ie fluid filled, not hot nodules.

 
Old 05-25-2007, 08:19 AM   #8
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Re: Thyroid uptake scan results and advice needed!

That would be a hot nodule, but that does not mean it would be a toxic nodule, a toxic nodule is one that usually supress TSH and will still keep putting out hormone......i havent followed your case but with the subsidary of symptoms and a non suppressed TSH there is no need to rush surgery, I would however, if it were me, get a FNA to see if its cancerious.....just rembered your above post and seen that it was done already, but were all your nodules tested? Also if dureing the course of this TSH did not suppress and is back on the rise, the option of suppressive therapy could also be persued to shrink the nodule.

 
Old 05-25-2007, 08:59 AM   #9
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Re: Thyroid uptake scan results and advice needed!

Quote:
Originally Posted by je46324 View Post
That would be a hot nodule, but that does not mean it would be a toxic nodule, a toxic nodule is one that usually supress TSH and will still keep putting out hormone......i havent followed your case but with the subsidary of symptoms and a non suppressed TSH there is no need to rush surgery, I would however, if it were me, get a FNA to see if its cancerious.....just rembered your above post and seen that it was done already, but were all your nodules tested? Also if dureing the course of this TSH did not suppress and is back on the rise, the option of suppressive therapy could also be persued to shrink the nodule.
Hi je46324,

Thanks for your comments. I found articles about treating hot nodules with ethanol. They say they have been doing this in Europe, but not so much in the states :

[url]http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_u ids=8830365&dopt=Abstract[/url]

I have 2 dominant nodules and they were both tested. I also have a couple tiny nodules too. The pathology report said Hashimoto's. I was always told I could not take medication with my TSH levels. What medication do you mean? My blood tests have been more or less like the ones I posted above for the past 10 months or so. I wouldn't mind getting rid of some of my symptoms.

If we removed the nodule, wouldn't that improve the symptoms? How do they tell if the nodule is "hot" or "toxic"?

Thanks a lot!

 
Old 05-25-2007, 09:02 AM   #10
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Re: Thyroid uptake scan results and advice needed!

By the way, the doc today (in nuclear medicine) said the "other important news is we know for sure it is not cancerous"....which I thought they pretty much knew from the FNA biopsy anyway.

 
Old 05-25-2007, 09:06 AM   #11
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Re: Thyroid uptake scan results and advice needed!

Quote:
Originally Posted by accessn12 View Post
Who me? Frustrated? Whatever gave you that impression? lol I was actually being a tad bit sarcastic with their interpretation of one test result which is semi-specific for diagnosing severe kidney failure but is not always accurate and has many known flaws if it is used solely by itself to look for anything else. They have not ruled out anything cause they haven't bothered to look. Edema is a symptom for a lot of different things. Hell, if they'd just look at my fingernails or bother to examine me or even take a quick peek at the edema, I think they might see that there really could be something wrong. I just can't believe, with my history that it's being ignored. I've never been one to go in there with a minor complaint. For me, it takes something like pneumonia to get me anywhere near them. Sorry. Rant over.

Would really need to read the report on the scan and also the report on the fna to come up with any type of conclusion. I'm really not sure if only part of a thyroid can be hot without the benefit of some type of overactive nodule or something there. It would also be interesting to know if the rest of the thyroid is "cold" or normal. Too many unknowns to make any sense of it yet. Please for sure let me know what the endo says. I like hearing the answers to some of these puzzles.

Oh, did I tell you we found a couple more late morels but that was it. The freeze really ruined it this year and we've had so little rain that everything got kind of messed up. We'll keep our fingers crossed for a bumper crop next year.
Hi again,

What is up with your finger nails? You would think that it could be a kidney problem. I hope when you are face to face with the doc you can get somewhere!

Morels....I just saw some the other day for sale at the local 'green grocer'. They were so expensive--about $20 for a large handful or so (maybe 2 small handfuls)--ouch! Even though I was tempted, I couldn't bring myself to pay that kind of money. I'm sure they are out there in the countryside here, but we are in the city and don't get out of town much. I didn't see many for sale this year, so maybe it wasn't good over here either.

Take care,

cougars

 
Old 05-25-2007, 09:27 AM   #12
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Re: Thyroid uptake scan results and advice needed!

Sorry guys--Just wanted to add what I found about a hot nodule--since now I am curious what this is all about. From reading this, maybe I just have the mild case and it hasn't progressed yet......??



A hot nodule is defined as a nodular region of the thyroid gland that takes up large amounts of radioactive iodine relative to the rest of the thyroid gland, hence it is visualized as a "hot spot" on the thyroid scan. The majority of hot nodules function autonomously, and have lost their normal ability to be regulated by TSH. Accordingly, they often produce excess amounts of thyroid hormone, and eventually result in the development of hyperthyroidism. In mild cases, the hot nodule may not be producing sufficient amounts of thyroid hormone to suppress TSH production and secretion from the pituitary, hence the TSH may be normal or towards the lower end of the normal range. As the nodule enlarges, becomes more metabolically active and produces increasing amounts of thyroid hormone, the TSH will become gradually lower, and if hyperthyroidism ensues, the TSH will be suppressed.

 
Old 05-25-2007, 11:26 AM   #13
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Re: Thyroid uptake scan results and advice needed!

Quote:
Originally Posted by cougars View Post
Sorry guys--Just wanted to add what I found about a hot nodule--since now I am curious what this is all about. From reading this, maybe I just have the mild case and it hasn't progressed yet......??



A hot nodule is defined as a nodular region of the thyroid gland that takes up large amounts of radioactive iodine relative to the rest of the thyroid gland, hence it is visualized as a "hot spot" on the thyroid scan. The majority of hot nodules function autonomously, and have lost their normal ability to be regulated by TSH. Accordingly, they often produce excess amounts of thyroid hormone, and eventually result in the development of hyperthyroidism. In mild cases, the hot nodule may not be producing sufficient amounts of thyroid hormone to suppress TSH production and secretion from the pituitary, hence the TSH may be normal or towards the lower end of the normal range. As the nodule enlarges, becomes more metabolically active and produces increasing amounts of thyroid hormone, the TSH will become gradually lower, and if hyperthyroidism ensues, the TSH will be suppressed.
That is a rather well put general explanation, it gets a little contradictory at the end though. I also think this seems to be a rather mild case since TSH is not suppressed and also symptoms subsideing even after stopping the beta blocker. The above sorta indicates that your hot nodule is not truely automonous and as of right now is not toxic. Since it does not appear to be truely automonous there is a possibility that even if it grew it does not necesarily mean you will become more hyper thyroid from it, which is the reason why I said suppresion therapy could also be given a try. I also did a search in pubmed since your link didnt go through for me and found that the ethanol shots were being used for hot nodules so that is a treatment choice you can use.

 
Old 05-25-2007, 11:35 AM   #14
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Re: Thyroid uptake scan results and advice needed!

The fingernails look horrible. Growing every which direction. Beaus lines, onycholysis, spoon nails and small hemorrhages popping up underneath em. I've always had nice nails. These don't look good at all. Could be a kidney problem, could be a heart problem, could be a lot of things. Whatever it is, it's mucking with my life and I'm not too happy about it especially not knowing what "it" is.

I looked em up online one time and was absolutely appalled at the price for even just an ounce or two of em. And here, they grow just about everywhere. We've even found em growing in the middle of the gravel road out front. I've seen reports on some of the web sites that they do grow over there. Perhaps you can find yourself a nice patch.

Now, that's an interesting read. Not ever having had a nodule, I never looked into them much. Sounds very plausable. You also might wanna look into what je46324 said about suppression. He's talking thyroid hormone supression with I believe it would by thyroxine over there. Am I correct je? I think you managed to pop in right before me.

 
Old 05-25-2007, 01:27 PM   #15
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Re: Thyroid uptake scan results and advice needed!

Hi again,

Thank you both for your input! I would be interested in knowing what medication you mean, je46324. I know one endo I saw last year said if he gave me medication to try and shrink the nodules, it would make me feel worse and more hyper. I don't know if this is true and/or if it is what you are referring to. I'd be interested to hear more.

Helen--your nails sound like they are a mess! How strange?! When did this start--at the same time as the edema? And, all of this started 'out of the blue'--or can you pinpoint something that might have triggered it. Do you still feel it is tied in with your thyroid?

Best to you both and thanks again-

cougars

 
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