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    Old 05-25-2007, 04:28 PM   #16
    accessn12
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    Re: Thyroid uptake scan results and advice needed!

    I don't know what happened. Things started going downhill after the first of the year. I just thought I was wearing out from being up so long. The exhaustion was horrible. I started getting slight edema sometime around the middle of february and then pulled off a fasting glucose of 148 and my t4 fell just back into normal range. They rechecked with a finger ***** a couple weeks later and the sugar came back at 98 and 97 so they said everything was ok. In the meantime, my urine production went down to less than 500ml day. I kept getting bigger and called and told em about the edema and how crappy I was feeling. They prescribed lasix by phone at the end of march. By mid april, when I went to see the endo out in nashville, my t4 and t3 had dropped to bottom of range. He declared I don't have a thyroid problem cause the labs he ran were in normal range except the tbg that was elevated at 92. Saw the pcp end of april and he ordered the creatinine clearance. Now I'm under orders to force fluids and take the lasix and call if things get worse. I already had an appointment for May 31 and I plan on keeping it.

    Sometime during all this my fingernails went to hell and no, I don't think it's a thyroid problem per se, but somehow I think it's all tied in.

    I'm just going to have to wait and see what comes of it.

     
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    Old 05-25-2007, 10:22 PM   #17
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    Re: Thyroid uptake scan results and advice needed!

    Quote:
    Originally Posted by cougars View Post
    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.

    The med I am talking about, that endos would use is throxine. I did go back over your history on the board here. The FNA is totally 100% diagnostic of Hashi's, but was it worded on the report as hashis or autoimmune thyroiditis? Also there could be some wording in there that might help out decipher what is going on, for instance a truely autominous nodule will almost always have abundant collide as long as it is still active(shows up hot on a scan), as apposed to just some, which could be seen in a hot non autominous nodule. I think your endo might just be looking a little to far ahead of himself right now, multinodule goiters do usually turn autominous at some point but there are some things that point that it might not be a true classic case of solely mutinodular goiter. If you want to get a little dig in on your endo the next time you see him ask him since he beleives it is a autominous nodule and meds would make you sicker why did he never suggest you decrease your intake of iodine, something that SHOULD be done if it is a autominous nodule.

    I basically think you have two overlapping confirmed thyroid problems, but this two problems are seen together quite often and the suggested classifaction is usually hashis with MNG being secondary DX, probably done this way because Hashis will ultimately prevail. I know you probably have some questions about what I am saying, but I am not very good at explaining things but Helen can explain things rather well and she has kinda grown to understand some of my ramblings.

    I did however run across my favorite site to refresh some of the bugs that might be in my head about MNG and they did have a update in it about these cases. I was amazed to find out that true MNG have a pretty unique tendency to enlarge the thyroid in a downward direction, in some cases it is so extreme that the thyroid will actually slip behind the chest plate. With hashis the goiters spread outwards rather then down, can you tell which way yours is growing?

     
    Old 05-25-2007, 11:10 PM   #18
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    Re: Thyroid uptake scan results and advice needed!

    Quote:
    Originally Posted by accessn12 View Post
    I don't know what happened. Things started going downhill after the first of the year. I just thought I was wearing out from being up so long. The exhaustion was horrible. I started getting slight edema sometime around the middle of february and then pulled off a fasting glucose of 148 and my t4 fell just back into normal range. They rechecked with a finger ***** a couple weeks later and the sugar came back at 98 and 97 so they said everything was ok. In the meantime, my urine production went down to less than 500ml day. I kept getting bigger and called and told em about the edema and how crappy I was feeling. They prescribed lasix by phone at the end of march. By mid april, when I went to see the endo out in nashville, my t4 and t3 had dropped to bottom of range. He declared I don't have a thyroid problem cause the labs he ran were in normal range except the tbg that was elevated at 92. Saw the pcp end of april and he ordered the creatinine clearance. Now I'm under orders to force fluids and take the lasix and call if things get worse. I already had an appointment for May 31 and I plan on keeping it.

    Sometime during all this my fingernails went to hell and no, I don't think it's a thyroid problem per se, but somehow I think it's all tied in.

    I'm just going to have to wait and see what comes of it.
    Helen,

    Your case sounds baffling. I am afraid I have no ideas to contribute (except do you think diabetes can cause those symptoms?--maybe your fasting sugar is still off if they tested it again)--I am very curious to hear what they will say on the 31st, so keep us posted and good luck!

    cougars

     
    Old 05-25-2007, 11:23 PM   #19
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    Re: Thyroid uptake scan results and advice needed!

    Quote:
    Originally Posted by je46324 View Post
    The med I am talking about, that endos would use is throxine. I did go back over your history on the board here. The FNA is totally 100% diagnostic of Hashi's, but was it worded on the report as hashis or autoimmune thyroiditis? Also there could be some wording in there that might help out decipher what is going on, for instance a truely autominous nodule will almost always have abundant collide as long as it is still active(shows up hot on a scan), as apposed to just some, which could be seen in a hot non autominous nodule. I think your endo might just be looking a little to far ahead of himself right now, multinodule goiters do usually turn autominous at some point but there are some things that point that it might not be a true classic case of solely mutinodular goiter. If you want to get a little dig in on your endo the next time you see him ask him since he beleives it is a autominous nodule and meds would make you sicker why did he never suggest you decrease your intake of iodine, something that SHOULD be done if it is a autominous nodule.

    I basically think you have two overlapping confirmed thyroid problems, but this two problems are seen together quite often and the suggested classifaction is usually hashis with MNG being secondary DX, probably done this way because Hashis will ultimately prevail. I know you probably have some questions about what I am saying, but I am not very good at explaining things but Helen can explain things rather well and she has kinda grown to understand some of my ramblings.

    I did however run across my favorite site to refresh some of the bugs that might be in my head about MNG and they did have a update in it about these cases. I was amazed to find out that true MNG have a pretty unique tendency to enlarge the thyroid in a downward direction, in some cases it is so extreme that the thyroid will actually slip behind the chest plate. With hashis the goiters spread outwards rather then down, can you tell which way yours is growing?
    Hi je46324,

    Thanks again for your time. Ok, I dug up my pathology report, but I am in France, so it is in French. It says :

    The samples have 'rares flaques de colloide nuageuse et basophile', which I would guess says colloid cells that are 'cloudy' (literal translation-don't know if it's correct) and basophile. Also, says the samples are populated with "mature and small lymphocytes accompanied by immunoblasts". At the bottom it says no sign of malignancy and the samples point to a first hypothesis of a Hashimoto's thyroid. Also, the report says the samples were identical, from a cell standpoint. They tested both of my nodules. Yet only one was "hot" on the scan.

    My current endo is not the one who said he couldn't give me medication because I would feel worse, it is the endo I saw for a second opinion. No one has mentioned cutting back on iodine. Do you think that might make me feel better? You see, I do get these hyper feelings that come and go with hand tremors, annoying muscle twitching, heart palps, fast pulse, etc. But, if it is true that the hot nodule is not really producing then it's not due to that (right?)--then where do these symptoms come from? Others had posted they thought the Free T3 was too high and could be causing the symptoms.

    As for what direction it is growing--good question. I don't know. They always feel it and always say--yes, wow you can definitely feel that. I will ask at my next appointment. I also think I should ask for another ultrasound scan to see if the nodules have grown or not, no?

    Thanks again, you have been most helpful.

    Cheers!

    cougars

     
    Old 05-26-2007, 03:38 AM   #20
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    Re: Thyroid uptake scan results and advice needed!

    Cougars,

    We shall see. Diabetes is very questionable and I kinda doubt it but they really haven't ruled it or anything else out. But it is time to look into some of the effects of long term hyper on the body. I'll let you know.

    Go ahead and post that report in french. Something in your translation caught my eye and I wanna see what it says word for word. I can do a little french, especially when it comes to medical mumble jumble. Nine years of french in school. Yuck. But it has come in handy. I'm not too bad at translating je46324 either. Interesting points je. Is it time for me to brush up on manger? You're making me feel pretty behind the times on this one.

    Refresh my memory, cougars. Did they test for more than one type of antibody or did they just test for tpo? As I recall, you did say negative antibodies?????

     
    Old 05-26-2007, 04:37 AM   #21
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    Re: Thyroid uptake scan results and advice needed!

    Quote:
    Originally Posted by accessn12 View Post
    Cougars,

    We shall see. Diabetes is very questionable and I kinda doubt it but they really haven't ruled it or anything else out. But it is time to look into some of the effects of long term hyper on the body. I'll let you know.

    Go ahead and post that report in french. Something in your translation caught my eye and I wanna see what it says word for word. I can do a little french, especially when it comes to medical mumble jumble. Nine years of french in school. Yuck. But it has come in handy. I'm not too bad at translating je46324 either. Interesting points je. Is it time for me to brush up on manger? You're making me feel pretty behind the times on this one.

    Refresh my memory, cougars. Did they test for more than one type of antibody or did they just test for tpo? As I recall, you did say negative antibodies?????
    Hi Helen,

    Ok--here it goes:

    4 etalements provenant des ponctions echoguidees des deux formations nodulaires basilobaires droite et gauche nous ont ete adresses.

    Tous les frottis examines apres coloration de May Grunwald Giemsa, persentent un aspect cytologique sensiblement identique au niveau de ces 2 localisations. Apres coloration de May Grunwald Giemsa, le frottis presentent un fond hematique avec de rares flaques de colloide nuageuse et basophile. Ils sont peuples de lymphocytes matures petits et grands accompagnes d'immunoblastes. On observe egalement de petits placards de cellules glandulaires en metaplasie oxyphile.

    Il ne figure pas de caractere cytologique de malignite sur ces frottis dont l'aspect evoque en premier lieu l'hypothese D'UNE THYROIDITE DE HASHIMOTO.

    A noter la presence de discrets remaniements de type kystique et hemorragique.

    That's it. As for antibodies, have been tested for anti-TPO, anti-TSH, anti-thyroglobuline, and 'anticorps anti-recepteurs de la TSH (TSI)', which I think is the TSI. I have traces of them, but at the very bottom of range = negative.

    Thanks so much for any insight you might have.

    cougars

     
    Old 05-26-2007, 04:40 AM   #22
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    Re: Thyroid uptake scan results and advice needed!

    Hi again,

    Just to say we are going out of town until late Sunday, so will check back then. Off to see the "Sleeping Beauty" castle in the Loire valley and taste some wine.

    Cougars

     
    Old 05-26-2007, 08:03 AM   #23
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    Re: Thyroid uptake scan results and advice needed!

    The large nodules only have small amounts of colloid present. Just a small amount in "puddle pools", which I gather from the translation wouldn't be a whole bunch. From how I'm reading it, the nodules they biopsied look like they were composed mostly of lymphocytes.

    The report says that it evokes an assumption of hashis but is worded in such a way that it is not a definitive diagnosis. But then again, is anything definitive in this game?

    Input je?

    Cougars, being non-autonomous doesn't necessarily mean you can't have symptoms. It just means that it cannot act on it's own accord. Throwing the possibility of hashis into the mix could paint a really weird picture. Hashis would not only probably eventually destroy the thyroid, it would also in the process probably destroy the ability of a nodule to produce hormones too. (You notice I say "probably" cause nothing is ever certain.) Being non-cancerous and being able to control the symptoms with betas may bide you some time to see what direction this whole thing is headed in.

    Are you pretty much feeling ok? That's going to be the most important factor in this whole thing.

     
    Old 05-27-2007, 01:57 PM   #24
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    Re: Thyroid uptake scan results and advice needed!

    Quote:
    Originally Posted by accessn12 View Post
    The large nodules only have small amounts of colloid present. Just a small amount in "puddle pools", which I gather from the translation wouldn't be a whole bunch. From how I'm reading it, the nodules they biopsied look like they were composed mostly of lymphocytes.

    The report says that it evokes an assumption of hashis but is worded in such a way that it is not a definitive diagnosis. But then again, is anything definitive in this game?

    Input je?

    Cougars, being non-autonomous doesn't necessarily mean you can't have symptoms. It just means that it cannot act on it's own accord. Throwing the possibility of hashis into the mix could paint a really weird picture. Hashis would not only probably eventually destroy the thyroid, it would also in the process probably destroy the ability of a nodule to produce hormones too. (You notice I say "probably" cause nothing is ever certain.) Being non-cancerous and being able to control the symptoms with betas may bide you some time to see what direction this whole thing is headed in.

    Are you pretty much feeling ok? That's going to be the most important factor in this whole thing.
    Hi there,

    Am back from our weekend away. Our girls almost did me in on the way back when we got stuck in traffic. Ugh.

    Ok, from what you've said, I have a couple questions then:

    -If it's not Hashis, then what would the lymphocytes be from? Just thyroiditis? Would that pass?
    -If the pathologist said both nodules were the same from a cellular standpoint, how come 1 shows up as "hot" on the scan?
    -if it is not autonomous, then how could the hot nodule be contributing to my symptoms? I guess this is the part I don't really understand. It is absorbing more iodine than the rest of my thyroid, right? So, does that have an impact on my levels? Then, I guess what je said would be true--if I cut back on iodine, should I feel better?
    -If it is not autonomous, then it should be following the TSH, right? Yet, my Free T3 is at the top of range (which must be why I feel crappy off and on)--so what could be causing the Free T3 to be high-ish?
    -If the nodule is not autonomous, then surgically removing it wouldn't impact my hormone levels, right? Or would it? There might not be a point to getting it taken out.

    Maybe I'm missing something. It gets so confusing.

    As for how I am feeling, it comes and goes. I would love to feel normal again. The tremors bother me some and the muscle twitching which comes and goes--and my heart beats faster at rest than it used too. I also feel some muscle/joint weakness sometimes. I guess I feel ok, but not really that great. But, it is true you have to weigh the side effects of the treatment options with how you feel.

    Thanks so much for your time,

    Cougars

     
    Old 05-27-2007, 02:55 PM   #25
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    Re: Thyroid uptake scan results and advice needed!

    Quote:
    Originally Posted by cougars View Post

    -If it's not Hashis, then what would the lymphocytes be from? Just thyroiditis? Would that pass?

    Lymphocytes are white blood cells. They are most often and almost always seen in hashis. However, they can sometimes be seen in any other thyroid disorders that involve the immune system, including graves and thryoiditis. Some types of thyroiditis do pass.

    -If the pathologist said both nodules were the same from a cellular standpoint, how come 1 shows up as "hot" on the scan?

    Good question. je?????? You've read more about these than I have.


    -if it is not autonomous, then how could the hot nodule be contributing to my symptoms? I guess this is the part I don't really understand. It is absorbing more iodine than the rest of my thyroid, right? So, does that have an impact on my levels? Then, I guess what je said would be true--if I cut back on iodine, should I feel better?

    Autonomous just means means it can act on its own. Non-autonomous means that it is not able to act on it's own. I don't think it would hurt to cut back on iodine and see what happens. Most people get a lot more than they really need anyhow.

    -If it is not autonomous, then it should be following the TSH, right? Yet, my Free T3 is at the top of range (which must be why I feel crappy off and on)--so what could be causing the Free T3 to be high-ish?

    Your tsh is not supressed. It very well may be following your tsh. Free t3 can change very rapidly. Sitting at the top of the range like it is, it could be contributing to your symptoms. Most people are uncomfortable with ft3 that high.

    -If the nodule is not autonomous, then surgically removing it wouldn't impact my hormone levels, right? Or would it? There might not be a point to getting it taken out.

    Here, I think the scan report might help. And again, I think je is a little more up to date on these types of nodules. If I had a nodule like that I would for sure look into a method of supressing it rather than having the thyroid removed. I'm not a big fan of hypo.
    Feeling just ok isn't bad. At least it gives you time to look into all the options and make a rational decision without feeling rushed. If you can live with how you feel for a little longer, I think you will feel much more confident with any decision that you do make.

     
    Old 05-28-2007, 09:29 AM   #26
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    Re: Thyroid uptake scan results and advice needed!

    Quote:
    Originally Posted by accessn12 View Post
    Feeling just ok isn't bad. At least it gives you time to look into all the options and make a rational decision without feeling rushed. If you can live with how you feel for a little longer, I think you will feel much more confident with any decision that you do make.
    Hi Helen,

    Thanks so much--lots of food for thought!

    As you said, the scan results should tell me more. I guess I am trying to understand how the nodule might be impacting my labs. If it is not autonomous, but is absorbing more iodine than the rest of the gland, does that impact the levels directly? The thyroid releases the hormones it makes from the iodine, right? So, the nodule could be releasing more than it should be. I believe I need to know if the rest of the gland was surpressed or functioning normally. The rest did look the same--sort of brown specks with yellow and the bottom right lobe had this bright yellow circle area. I have also read that Graves can look like this at the beginning, so now I am wondering if I could have that instead of Hashis?

    Always lots of questions with this problem. Don't feel like you have to try to answer all of them. I am just talking out loud. I am sure I will find out more (at least I hope so) when I see the endo.

    Thanks again! Good luck on the 31st!

    cougars

     
    Old 05-28-2007, 10:12 AM   #27
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    Re: Thyroid uptake scan results and advice needed!

    My scans were all done before they did colour. I know a bit about reading them in b&w. Mines black in a very uniform manner.

    I'm going to send you to a site that is pretty darn technical but if you skim through it, you should be able to make some sense of it. It will explain how the iodine and all that other stuff works together to produce the hormones:

    [url]http://www.thyroidmanager.org/Chapter2/2-frame.htm[/url]

    Study it hard enough and you can really wow your endo. Either that or tick him off royally if he's an a**.

     
    Old 05-28-2007, 10:41 AM   #28
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    Re: Thyroid uptake scan results and advice needed!

    Thanks -- will have a look!

    Take care,

    cougars

     
    Old 05-29-2007, 09:52 AM   #29
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    Re: Thyroid uptake scan results and advice needed!

    You raise all the right questions here, I dont really think they can all be answered but maybe I can explain a little bit so you might understand what is happeneing and how the thyroid system works.


    Quote:
    Originally Posted by cougars View Post
    Hi there,

    Am back from our weekend away. Our girls almost did me in on the way back when we got stuck in traffic. Ugh.

    Ok, from what you've said, I have a couple questions then:

    -If it's not Hashis, then what would the lymphocytes be from? Just thyroiditis? Would that pass?
    Actually it is just the opposite here the lympocytes (killer T and B cells) make it seem more like hashi's then thyroiditis. I really cant give you a lot of specifics because I have never studied exactly how the immune system works but the general explanation/theory is: What hashimatois desbribed was a chronic condition and the destruction to the thyroid cells showed major deformities, cells with double neucleses, giant follicular cells, it was like some cells were getting cell walls blown off and then just fuseing together with any near by cell in a last ditch effort to stay alive. When you see this type of cell in a FNA you know it is hashis, what is not known is exactly how the process goes in order to get to this type of major destruction. Through research it was found out that the anti thyroglobulin and the anti peroxidase antibodies do cause some damage but not the major damge that hashimotos seen...it might be that because of the limited amount of time that was done in this research, no animals were ever left to live longer then a year or so with these antibodies, but I do beleieve that they are now finding that the destrction can come rather quickly when the T and B cells get involved in conjunction with the other antibodies. I do beleieve that they are doing research with T cells and a search of T cells and autoimmune thyroid disease should bring up some research papers that are probably mostly within the last 5 years or so, I cannot say excatly for sure what this research is showing because it is not in my specific area of interest so I do not read them but the theory of hashis is now being desribed that to really have it there must be T cell involvment at some point.

    Quote:
    Originally Posted by cougars View Post
    -If the pathologist said both nodules were the same from a cellular standpoint, how come 1 shows up as "hot" on the scan?
    Cant really answer this but one of the reasons why surgery is preferred for MNG is because although one is usally the hot nodule when RAI is used after some time one or more of th other nodules is likely to become hot, it does seem odd and no one really even has a theory as to why this happens.

    Quote:
    Originally Posted by cougars View Post
    -if it is not autonomous, then how could the hot nodule be contributing to my symptoms? I guess this is the part I don't really understand. It is absorbing more iodine than the rest of my thyroid, right? So, does that have an impact on my levels? Then, I guess what je said would be true--if I cut back on iodine, should I feel better?
    All that we do know for sure right now is that it is takeing in more iodine then the rest of the thyroid tissue. Now I am baseing some things off of assumptions from the research on hot nodules that were toxic, symptoms progress in this people at a steady rate they do not hit highs and lows but are more progressively constant, that is why I am assumeing that the nodule is not contributeing in a major way to your symptoms. What I said about the iodine is always recommended when a person with a automounous nodle is found. Since it does not function under TSH control the more iodine taken in the more hormone it will put into the blood. The main reason this is done is that to do surgery on a automonus nodule the person must be brought back to non symptomatic thyroid state.

    Quote:
    Originally Posted by cougars View Post
    -If it is not autonomous, then it should be following the TSH, right? Yet, my Free T3 is at the top of range (which must be why I feel crappy off and on)--so what could be causing the Free T3 to be high-ish?
    The reason why I think one of your endos thinks this is a automonous nodule is because of the elevated T3. This is seen sometimes in cases of automonus nodules but it is not the most likely thing to happen in them, thyroid cells take extreme efforts to put out a certain ratio of T4 and T3 so the majority of cases of toxic nodules see a increase in both hormones not one. Another condtion that we see elevated T3 levels is what is known as hashis toxicisis ( thats just the most popular name), in these cases symptoms do go up and down. Since the antibodies destroy the thyroid tissue the accidently release any stored hormone, but since this release is not TSH controled the ratio of normal T4 to T3 is not kept intact.

    Quote:
    Originally Posted by cougars View Post
    -If the nodule is not autonomous, then surgically removing it wouldn't impact my hormone levels, right? Or would it? There might not be a point to getting it taken out.?
    If your were dealing with just the MNG condtion it would be true that if it is not automonous there would be minmal if any effect on the hormone levels.

    Quote:
    Originally Posted by cougars View Post
    Maybe I'm missing something. It gets so confusing.

    As for how I am feeling, it comes and goes. I would love to feel normal again. The tremors bother me some and the muscle twitching which comes and goes--and my heart beats faster at rest than it used too. I also feel some muscle/joint weakness sometimes. I guess I feel ok, but not really that great. But, it is true you have to weigh the side effects of the treatment options with how you feel.

    Thanks so much for your time,

    Cougars
    Well I hope this can clear up some of the confusion, though I know it will most likely bring up more questions, it almost always does. Now just to throw some more things at you as to why I do not think the nodule at this point is not automonous and the above should explain why I think right now your levels and symptoms indicate this as more of a hashis swing. Europe has a significantly less iodine intake then the US does, so much so that ranges for normal uptake scans have to be adjusted between the 2 contenets. It is rather common to see higher uptake levels in europe. AS far as I know there are no color uptake scans so when you say you see yellow I just think that it is a sort of illusion, in some scans that I have seen of people with autoimmune thyroid disease there are areas were there would be a yellowish looking tint but what happens is because of destruction and meshing cells the thyroid does not take in the iodine consistently from cell to cell so what haqppens is you have a tiny white spot sitting inbetween to tiny black spots, which can give a yellowish appeareance. Also I do not think the nodule is toxic because automonus toxic nodules almost always appear as totally white spots, and being that you are in europe I would really expect this when you throw in the likely lower iodine dietary intake.

     
    Old 05-29-2007, 10:12 AM   #30
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    accessn12 HB Useraccessn12 HB Useraccessn12 HB User
    Re: Thyroid uptake scan results and advice needed!

    Thank you je. I was getting in a little over my head on this one. Looks like too many things going on at once to be able to place the blame on any one thing.

    Got a question for you. I do believe she was raised in your neck of the woods. Does this lack of iodine on the european continent cause an acute problem or does it take years and years of iodine deficiency to cause a problem?

    Cougars - How long have you lived in france?

     
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