Re: Re: Had RAI about9 weeks ago but........

[Guest guest]

Hi, Vicky....

Hyperthyroidism is not a diagnosis.... it's the condition resulting from something else which is the cause, the diagnosis.....

Are you hyper due to an autoimmune disorder like Hashi's (Hashimoto's Thyroiditis, the most common of the thyroid disorders) or Grave's? Or is it a genetic defect, like me?

You're antibodies are high.. and unless the dose of RAI was sufficient to destroy all the gland tissue you are still going to be dealing with the antibodies attacking the gland. That is going to continue until the gland has been destroyed. At this early stage we still don't know how much gland function, if any, remains....

Within a few days of my RAI I came down with a case of strep... swelling me up so bad that I was having difficulty breathing.. but I don't remember much happening as far as my voice changing....

I'll definitely be waiting to see what the labs will be showing on the 12th and what the doc does... I'll be honest, I'm not thrilled with his choice to give you RAI.... there are far too many risks involved with it considering that your numbers weren't showing that high. We'll just have to wait and see....

Topper ()

On Sun, 01 Jan 2006 09:28:31 -0000 "Vicky" writes:

Hi again,Thanks for the reply, My diagnosis is hyperthyroidism. I had the thyroid scan that showed a lot of activity going on, also I had a thyroid ultasound that shows 18 noules/ multinodular, and I have only had one test for the ft4 since I had the RAI 9 weeks ago, but I am scheduled to see him on January 12th, so I don't know what the labs would read now but 5 weeks after the RIA I had the ft4 and it had improved but not as much as I thought it would in that length of time. My labs: Their labs ranges I'll post beside each.TSH 0.021 ( 0.500-5.700)T3 free 5.6 ( 2.3-4.2)T4 free 1.98 ( 0.80- 1.90)Tpo Ab 967 ( 0 - 34 )Antithyroidgloblin Ab 523 ( 0 - 40 )He is only checking and has only checked the T4 as an indicator, so one test for that and the result were 1.66, so it has come down but I thought it would have come down more by then, I won't know what it actually is until I go back again in 10 days.He said I didn't have thyroiditis that is was definately a multitoxic goiter ( even though my neck doesn't look swollen). That is why I had the RAI, he said that since the antibodies are high and I could take medications, have it removed or have the RAI, that it was better to have the RAI as the tissue around the thyroid after they removed it would still be affected by the autoimmunity and also he thought it was the best choice anyway.The idea is to render it totally non funcional.I have not started on replacement hormone yet. He said when it gets to where it isn't functioning he would put me on it. He did say that in a lot of cases it gets worse before it gets better while it is killing off thoese nodules as they secrete more hormone into the bloodstream while being killed off for lack of a better term. As far as my voice, I always had a strong voice and was a singer in church, did solo's and played the piano and other musical instruments but now even if I talk too much, my voice goes and it aches. Ever since the RAI, thats when it started as a matter of fact for the first 3 days I could talk hardly at all I almost completely lost my voice altogether. ThanksVicky

[Guest guest]

Hashi's can cycle between hyper and hypo... some folks can actually go into storm in their hyper phase... others just recognize it as the times when they can lose weight really well... and the hypo phase where they can't lose weight now matter what they do.....

Hashi's is the most common of the thyroid disorders... It's autoimmune, as you said... and the tendency to develop autoimmune disorders tends to run in families....

Have you started charting basals yet and/or journalling? It's an amazing way to track what your body is doing... you can spot changes quicker than waiting for labs and are able to respond and make adjustments sooner than waiting for labs as well.....

If you haven't... we'll get you started... charting is awesome.. you get to SEE what your body is doing... can actually find cause and effect for how your body reacts... neat stuff....

How our bodies react to this hormone stuff is VERY individual... most folks that are hypo gain weight.. some don't... most folks that are hyper lose weight... some don't.... a LOT of folks with messed up thyroid hormones have problems with memory, moods, depression.... Very few have no impact at all..... What I'm trying to say is that the symptoms, reactions, responses... are all very individual.. that's why we are always sharing stories here.... some little thing that someone says about something they've experienced is gonna hit some one as a 'oh, wow, that's me! I've had that too! That's thyroid? Wow... I'm not nuts... I can fix that!!!????"

Topper ()

On Mon, 02 Jan 2006 07:44:31 -0000 "Vicky" writes:

Hi,

I was wondering and confused about the diagnosis as it said on the diagnosis hyperthyroid BUT like you brought out what is the cause? Well he said I did not have hashimoto thyroiditis and he never once mentioned Grave's diseae, I think it is genetic. Autoimmune problems run in my family. I had asked the question

'How can you have a problem being hyperthyroid involving immunity and it not be Grave's?No one could ever tell the difference and I am still confused. I will post my resluts after I get them. I, like I said see him on the 12th but it takes a few days to get the results.

Thanks

[Guest guest]

Vicky, I have read several of your posts on the doctor saying that this is

not Hashimoto's or Grave's Diseases, clear back to a couple of wks ago, I

believe? This is really bugging me because, from your antibody counts, it

is Hands Down, at least Hashimoto's, and is probably both Grave's and

Hashimoto's. This doctor does not know anything about the autoimmune

aspects of thyroid disease, which is almost always the main cause of thyroid

failure. With these kinds of antibody counts you have, there is absolutely

NO doubt that you have at least Hashimoto's Disease, if not both Grave's and

Hashi's, and I just can't get over this doctor saying this! You DO have at

least Hashi's, as you have high antibody counts to both major factors in

thyroid hormone production and storage. Mine are BOTH in the thousands for

both of these major antibodies. OMG, I can't believe he is saying this! In

your case, I truly believe that it would have been best to REMOVE the gland,

as it is multinodular and toxic, both. Aaaaaaaaaaaaaa!! If you are/were

heading into thyroid storm, that might explain why he didn't remove it, but

if it is interfering/will be interfering with breathing or becomes " the

gland that wouldn't die " (good movie title), then it will eventually have to

be removed, with all that extra " landscaping " it has (nodules in high

counts). It's just amazing me that he doesn't even know autoimmune disease,

when it's staring him in the face, right off of the lab sheet!!

Re: Had RAI about9 weeks ago

but........

>

>

>

> Hi again,

>

> Thanks for the reply, My diagnosis is hyperthyroidism. I had the thyroid

scan that showed a lot of activity going on, also I had a thyroid ultasound

that shows 18 noules/ multinodular, and I have only had one test for the ft4

since I had the RAI 9 weeks ago, but I am scheduled to see him on January

12th, so I don't know what the labs would read now but 5 weeks after the RIA

I had the ft4 and it had improved but not as much as I thought it would in

that length of time.

>

> My labs: Their labs ranges I'll post beside each.

>

> TSH 0.021 ( 0.500-5.700)

>

> T3 free 5.6 ( 2.3-4.2)

>

> T4 free 1.98 ( 0.80- 1.90)

>

> Tpo Ab 967 ( 0 - 34 )

>

> Antithyroidgloblin Ab 523 ( 0 - 40 )

>

> He is only checking and has only checked the T4 as an indicator, so one

test for that and the result were 1.66, so it has come down but I thought it

would have come down more by then, I won't know what it actually is until I

go back again in 10 days.

>

> He said I didn't have thyroiditis that is was definately a multitoxic

goiter ( even though my neck doesn't look swollen).

>

> That is why I had the RAI, he said that since the antibodies are high and

I could take medications, have it removed or have the RAI, that it was

better to have the RAI as the tissue around the thyroid after they removed

it would still be affected by the autoimmunity and also he thought it was

the best choice anyway.

>

> The idea is to render it totally non funcional.

>

> I have not started on replacement hormone yet. He said when it gets to

where it isn't functioning he would put me on it.

>

> He did say that in a lot of cases it gets worse before it gets better

while it is killing off thoese nodules as they secrete more hormone into the

bloodstream while being killed off for lack of a better term.

>

> As far as my voice, I always had a strong voice and was a singer in

church, did solo's and played the piano and other musical instruments but

now even if I talk too much, my voice goes and it aches. Ever since the RAI,

thats when it started as a matter of fact for the first 3 days I could talk

hardly at all I almost completely lost my voice altogether.

>

>

>

> Thanks

>

>

>

> Vicky

[Guest guest]

You already have the autoimmune standpoint of those two antibodies. Now you need two more antibodies testing done. One is called the ? someone help me out here, ind went blank. I believe it is the TRab test, and then there is another one. Anyway, both of THOSE antibodies are totally concerned with Grave's Disease, not Hashimoto's. However, the Antithyroglobulin Antibody can also be high in Grave's Disease (which you have high #s for this). These last two are more definitive for Grave's Disease. If you are high in one or both of these last two, you would have BOTH Grave's and Hashi's. Aaaaaa, can't think of the name of that other antibody! If your doctor doesn't alREADY understand the autoimmune part, then he's not even going to know what to tell you or what to do, this is obvious to me. Anyone, isn't that other antibody a TSH stimulating antibody to the TSH receptors?

Re: Had RAI about9 weeks ago but........

, thank you for seeing something as far as and answer to what I have longed for.

My doctor is the best endocrinologist in our area BUT even so, I have seriosly had thoughts about seeing an immunologist. I feel that MAYBE he/she could at least tell me what in the world is going with my immunity better as this endo dr even though he is supposed to be good and I have seen him for years, terrific person but like you said, he doesn't see the autoimmunity as being an issue. He did show me those results when he first decided to do the RAI and said your immune tests are very high but I don't think you have thyroidtis you are hyperthyroid, so the best thing I think would be to do RAI. I had lost to 81 pounds and I'm 5' 8". I suppose the fact that I had insisted that someone do something or I literaly thought I may die as I did end up in the hospital my weight became so low. I told him that I was upet that drs NEGLECT a patient until they end up like me, that word was all it took for him to jump to it and do what ever he though he could do. I was going down fast and my nervous system was almost at thyroid storm level, palpatiation, insomnia, anxiety levels so high off the scale high, ect.

Anyway, thank you for your input. I don't know what to do at this point. I have an appt on the Jan 12th so I am going to ask him if I have Graves disease and what he thinks of my autoimmunity? And also if we can check that again. Do you think it would be a good idea to check that to see and keep a check on it or does it matter? He doesn't seem to think that anything matters but the ft4 level and waitng until it the gland dies before he gives the medication but what if it doesn't die? OH BOY. I couldn't help but to chuckle when you said it could be " THE GLAND THAT WOULDN'T DIE". I have thought of this before but am in the dark as I don't know what is going on immunity wise or the other levels only the t4 at this point.

I also have autoimmune problems other than thyroid too so there are a lot of immune issues going on in other areas where I need to see other type drs but WHO?

Thanks again.

Vicky