radioactive iodine? HELP< DESPERATE

[Mojoe89]

My doctor keeps pushing me to get radioactive iodine but I am a little nervous. since last year I have not been feeling well and have had a low tsh <.01 for about a year now and for 2 months have been on 10 mg methamazole. originally my T4 and Free t3 were in normal range and but Igf-1 was climbing.  Now my T4 is going down T3 free is 475 and tsh remains at <.01.
I still have no diagnosis confirmed except "You're a little hyper" I get shakey at times but by no means am I thin or have I lost weight. I get really really tired but I am never hyper! I wish I was.

My question is can't it be something other then the thyroid? Should I go for the radioactive iodine without really knowing anything? I feel like I am treating the symtoms with out knowing the problems.

Why is t4 going down and t3 going up?

Should I go for another opinion?

[smalltown99645]

The the OP (I know that was ages ago), if your FT4 starts dipping below the middle of the range, or for some people a bit higher than the middle, you may start feeling hypo. You may have joint pain, gain weight, your hair may fall out faster, you may have trouble getting out of bed. This is very common and it just means you need to lower your meds until your FT4 gets back into range. Some doctors don't realize that the TSH is *zip* with Graves for a long  time, a.k.a. years, due to the antibodies. So they attempt to blast it into existing by giving you massive doses of ATDs until you're hypo. Also many doctors are really, really, REALLY bad about monitoring your labs and lowering your dose as you get better. It doesn't mean the ATDs aren't working, it means you need a smarter dose.

[Mellowscout]

Get lots of tests done.  Make sure you trust the doctor that you are seeing.  And it's true that you may or may not experience all symptoms.  I have Graves' disease and did RAI a week and a day ago.  It was the right option for me.  And it may be the right optioin for you if you have hyperthyroid.  It really depends on what your endo says would be the best for you.  But make sure that you actually have a thyroid problem first!  And do some research if you do end up with a thyroid problem.  You have to weigh the consequences with the benefits, while it may be true that Graves and RAI causes eye problems, it is also true that if you don't get it under control, you can stroke out or have fatal consequences.  

And I understand about the weight gain.  I have weighed under 100 pounds my whole life, the thought of MAYBE gaining 20-30 pounds doesn't sound appealing to me.  It really doesn't matter what weight you are, no one wants to gain more!  But my doctor did say this to me, "It's not the end of the world," So I'm trying to be positive.  Good luck to you, keep us updated.

Mellowscout...good luck!

[Mojoe89]

I think part of my problem  with the doctors diagnosing me was that I am  not losing weight. I kept on telling them that I was gaining but they kind of dismissed that. I went from 150 lbs to 170 and bounce around there.  I don't think that mentally I could deal with gaining more weight I am sure deep depression will ensue.

[Smilerdeb]

Isnt it funny that the 'fallacy' of Graves is that you LOSE weight lol.
I actually gained 16 kgs (approx 33lbs) and dint lose any.
Although I must say that years prior to Graves diagnosis , I would go through 'phases' of being skinny one minute and fat the next.

[TKIngalls]

Smilerdeb and stella5349 have some great advice. I just wanted to chime in with my own experience of being hyperthyroid (due to Graves). Not all people exhibit all symptoms. I had all the classic hyper. symptoms except I was GAINING weight not losing. Every other damn thing about my body sped up but my metabolism. So my advice is to pay attention to how you feel but the best way to keep track of what your thyroid is doing is getting regular and accurate blood testing.

TK

[Smilerdeb]

When someone has Graves and still has their thyroid..the TSH may NEVER come up.
Thats a well known fact with Graves..regardless of the Ft3 and Ft4 levels.
TED (thyroid eye disese can be detected before you even know you have it by an Opthamologist ..not an Optometrist as most think.
I used to read a lot of Elaine Moores research and most of it is valid reading.
It was my Doctor who told me that whilst I still had a functioning thyroid, my TSH would never be within the range and would always be at 0.05 which is was for a long while.
After RAI and TT, my TSH went to over 6.0 in 5 weeks.
Thats when I was started on Thyroxin as my Doctor didnt want me to crash into Hypo he// or go hyper again either.

I dont ever regretted having RAI...I regretted having Graves..something we have no control over.

A good friend of mine once told me ....

I have Graves, it doesnt have me.

And that has always been my philosophy.
I wasted too many years on Graves and Hyperthyroidism and finally got my life back.
This friend of mine also has Graves Opthamology and TED and would be great for you to talk with her.
She is a member here ..Marpo1 and has just had her last operation on her eyes and looks like a million dollars.
She is one of the worst cases I have seen with TED and now her eyes are back to normal after surgerys.
Look her up on the members list........
I wish you all the best Eliza
Debs x

[Eliza150]

I never had eye problems until post RAI. .This went on for a year. If you have a doc that understands that it can take a long time for the TSH to recover,it will make all the difference .Elaine Moore has great info on all of this.

[stella5349]

Deb - your post was excellent - thanks as always......

[Smilerdeb]

Eliza150
I had RAI in 2008 and it was because I had 3 episodes of thyroid storm BEFORE RAI.
Surgery was out of the question due to Atrial Fibrillations non stop from hyperthyroidism.
I tend to disagree that RAI 'causes' eye problems.
The eye problems are already there before RAI and RAI 'may' aggravate those problems if the TED isnt picked up beforehand.
RAI does not cause TED......Hyperthyroidism and Graves antibodies cause TED.
If an Endo knew that you had eye problems, you wouldve been put on a dose of prednisolone before RAI or a TT done.
I sympathise with your eye problems but this shouldve been checked before RAI was given.
Needless to say...some Endos dont schedule an Opthamologist Test before RAI.

FORTHYROIDHEALTH

RAI is less invasive....and Thyroidectomy isnt always the answer to a persons problems with their thyroid.
I do understand it was your choice to have a TT and respect your wishes but also respect others wishes knowing that sometimes they DONT have a choice and have to have RAI.
Everyone has a personal preference and I have always state to people that they should research as much as they can in regards to permanant treatment and to not just rush into something they know nothing about.
RAI may not be your choice but this forum is not here for you to tell someone that RAI is dangerous.
I too could state the same with TT but I dont.

I look at both sides of the fence........point out the 'Fors and Against' in BOTH treatments.

I suggest that maybe you read up and research a little more in regards to both RAI and Thyroidectomy as there can be side effects from BOTH.
I do respect your choice of a Thyroidectomy just as I hope you respect mine with RAI.
I know that if I should have to have RAI again...I wouldnt hesitate and I am someone who was born with a heart murmur, Bradycardia, Tahcardia , Prolapse of Mitral, Tricuspis and Pulmonary Valves.
Did it kill me?
No.
Thyroid storm and uncontrollable treatment by anti-thyroid meds wouldve killed me without RAI.

Mojoe89joe89
Do as I said and investigate ALL avenues and ask as many questions until you get answers.
Take the time (if anti-thyroid meds are keeping levels stable) to research everything you can on RAI and TT.
And as Ive always said....If it aint broken, dont fix it.
Dont do anything permanant until you know for sure that it is needed.

I hope I havent offended anyone with this posting.......
I just wanted to get the message across that everyone has a right to their own personal choices with the thyroid issues.

[stella5349]

You should first - examine all the treatment options - including RAI and see where things will get better with those treatment options.

Usually a GOOD doctor will try antithyroid meds or PTU to see if this may be onset hyperthyroidism and things could calm down with meds.

"Because the only reason you would need RAI would be if after fine needle aspirations, they did find cancer." - This statement is not true

There are other reasons for RAI. Graves disease is one. I-123 is a level of RAI that examines the glad for possible issues. I-131 is the RAI that destroys thyroid cells.

IF you had TED disease and it was not found prior to RAI - that is terrible. Again this is where I strive to tell people to know as much as possible prior to having any procedures and how to avoid these permanent issues.

There is major comments of the population that will put on pounds due to becoming hypothyroid after RAI - but IT can be avoided - or at least fixed later.

I had RAI and gained 40 pounds and LOST 20 of it recently. Its all about you whether you had RAI or not and finding where your body is slowing down to fix the problems.

Don't judge the fact of gaining weight and suggesting NOT to had RAI b/c of that.
Whats worse - dying from a thyroid storm from not having RAI - to gaining a few pounds that WILL eventually come off.

I agree with Deb and opted out of RAI until all the issues are looked at.

[Eliza150]

Please don't take RAI.I had it in 2004.Caused a thyroid storm,messed up my eyes,gained 50 pounds.

[Mojoe89]

great website thanks

[Mojoe89]

Thank you. You have written exactlly what I was thinking but I was beginning to doubt myself

[Smilerdeb]

Until your Doc or Endo runs the antibodies tests, the condition is 'uncontrollable' then tell your Doc/Endo to sit his fat butt in the Nuclear Department and get it done himself.

You may only be suffering from T3 Toxycosis and may not have an Autoimmune Disease at all.
DO NOT GO FOR RAI ....until you are 100% sure that it is needed and that you are suffering from an Autoimmune Disease that CANNOT be controlled by Anti-thyroid meds.

[skeeterknitwit]

Forgot to add - There is a whole list of tests you should have done to determine the cause of the hyperT and make a correct differential diagnosis.
TSH
Free T4
Free T3

Antibody tests go by several names, but there are basically 3 of them.
TPO - aka microsomal antibodies
TSI - aka TRab
TGab - aka thyroglobulin antibodies

ultrasound
RAI scan & uptake
WBC - could inticate infection
Sed rate - could indicate inflamatory process

Here is a good site  http://www.aafp.org/afp/20050815/623.html
The chart really helped me understand my hyperT diagnosis.

[skeeterknitwit]

Is your Dr. suggesting treatment with RAI? or a scan with RAI?
An RAI scan can help determine the cause of the hypertyroid.  The radiation is very low, about the same as an x-ray, and it will not damage your thyroid tissue.
The whole thing is confusing.  I-123 is usually used for a scan and uptake.  Some mobile diagnostic labs use low dose I-131 because it has a longer half life. The dosage is in picocuries.
I-131 is used for treatment and the dose is in millicuries.

Don't be afraid to write down specific questions and take them to your Dr. appt.