Graves and Radioactive iodine

[lswen]

I am scheduled to get irradiated tomorrow and really have some questions about doing this.  I have had the same results for about 10 years but this Endo that I have now says that this needs to be done.  I have never had any symptoms other than rapid heart beat and shaky hands.  My blood results are (normal ranges in parenthesis) TSH 0.01 (0.3-5.0), Free T4 1.33 (0.8 -1.9), T3 3.5 (2.3 - 4.2), Thyroperox Ab 40.8 (0-35).  I am just wondering if I am doing the right thing by having my thyroid irradiated when I have no symptoms.  Any help or just suggestions would be so great to hear.  Thanks!

[ancientmariner]

Just noticed your post - it seems to me that Agent Orange is bad enough - I know people who have been very sick from it and one who dies at a very young age from cancer blamed on Agent Orange. I would not compound that trouble with RAI, if it were me! I had RAI, mainly because that and surgery were the only options my endo told me about. Now that I have smartened up and started researching on my own, I know that I should never have had it done. Radiation is BAD, too.
So my advice is to do as much research as you can, so you and your stepdaughter can make an informed decision. Also, one rule I live by since my contact with that endo is that any doctor who makes you feel stupid or inferior, who ridicules your opinions and your research, doesn't have your best interests at heart - find someone who will treat you like a human being.

[doodlebug1]

I just went to GOOGLE and typed in Agent Orange Hyperthyroidism.......and yup, saw the two mentioned all over the place, along with other ailments. You and your stepdaughter should also go to GOOGLE and type in Atomic Women Graves Disease and read all the links you get, because YOU need to be VERY informed. LOTS of folks regret ever doing RAI.

[desert angel]

hello i,m in need of imformation on graves disease please what causes it. and can it be relateted to agent orange from the nam war if exposed to it. any imformation would help as just found out my step daughter has it. thank you  desert angel

[JDrake]

I hate the depreesion too and the mood swings.  I feel like a walking mess most of the time.  

I took half the Cytomel dosage this morning and will take the other half this afternoon, no wired feeling today.  I didn't like how I felt yesterday morning so I decided to split the dosage.

I am just wondering if my dosage of T3 is too high because from what I've read on it, most doctors start their patients on 5 mg or 12.5 mg and my doctor started me on 25 mg?

Jenni

[Ussie]

I hope it works out for you too. Talk about depression, I have had depression ever since 2002. Hypo on ATDs, the hypo after RAI. Dang, I hate that depression.No depression now and lots of energy.

About your Cytomel, do you split it or take it all at once. Some people split their dose, so it won't give them too much of a wired feeling at one time. But, wouldn't take it before bedtime for sure.

Good luck to you and will keep checking back.

[JDrake]

I started taking 25 mg of Cytomel with my Synthroid today, the first hour after I took the Cytomel I was really wired but it subsided.  I have been hungry all day though.  I am hoping this will work and my hair will stop falling out and the depression will lift.  I go back to the doctors in 4 weeks for more labs to determine if my dose needs to be adjusted.  

I am anxious to see how this turns out and am hopeful that it will.  I just don't want to get my hopes up.  

I will keep you posted and please keep me posted on how your doing.

Jenni

[JDrake]

Do you know much about the Cytomel?  I was wondering if it causes anxiety,insomnia and shakiness?  And if so, does your body eventually adjust to the T3?

Jenni

[Ussie]

Yes, I am doing well. It is a generic levoxyl and tastes like powdered sugar.

I was quite hyper about 7 weeks   ago because I overmedicated myself. Was having heart palpitations. You know like Graves all over again. So, that is when I went to seek a doctor.

If I could just stay on this amount for the rest of my life, that would be wonderful. Don't think it is going to happen though.

[JDrake]

I can't believe how many doctors we have to go through just to get one that is open minded and willing to listen.  We are not alone, I have talked to quite a few people that have went through 4 or 5 doctors before finding a good one.  I didn't think it would be this difficult.  The last doctor wasn't bad but he wasn't someone that could treat me on a regular basis because he works at a drug and alcohol rehab center, I just got an appointment with him because I found him on the Armour website.  I still haven't heard from the doctors office and I sure hope I hear something soon because I don't want to wait until Monday.  Are you doing okay on the Levoxyl?  I know it is cheaper than Synthroid!  I am paying $24/month for the Synthroid and I think that is expensive.

Jenni

[ancientmariner]

I know several people who are on the Synthroid/Cytomel, and they all say it's better than just Synthroid. Maybe it'll do the trick for you!

[JDrake]

I am going to go ahead and give the Synthroid and Cytomel a try even though it doesn't give me everything that the Armour would.  I am going to follow the instructions of my new doctor and if that doesn't work well then I will ask him to change my medications but I know from being on just Synthroid that alone isn't working and my stomach can't handle the Armour.  I hope things turn around for me, I really need it!

Jenni

[Ussie]

Would you believe this is my fifth one also?It is a wonder he wanted to treat me after I told him about me self medicating, but explained to him what happened. He wasn't very happy, but he did understand.

So you had 3 of those capsules!!! My goodness, that had to be more than I took. No wonder you went hypo so quick. Yep, you might do great on some Armour or what you are doing right now.

I go back in 6 months, but if I start feeling like **** again, doc is going to know about it pronto.LOL

Wish you luck on your t4 and t3.

[JDrake]

I hear you about the sweaty nervous feeling, I got that too from the Armour and I had insomnia.  When I had my RAI treatment the radiologist gave me 3 of those capsules, I was completely hypo within 6 weeks, the endocronologist couldn't believe it until I almost went in to a coma and had to be rushed to the ER.  My heart rate within 6 weeks went from 150 beats per minute to 50 beats per minute and my blood pressure was 90/60.  I went and saw the doctor yesterday and he is putting me on 137 mg of Synthroid and a low dose of Cytomel, he said he won't know the dose of T3 until he gets my lab results later today.  Can't wait to hear what he has to say.  He is a very nice doctor and I am confident that he'll be able to help as his wife has Grave's Disease and he has been treating her.  He told me that once you have the ablation it usually takes about year for the thyroid to be completely ablated. How many doctors hae you been to?  This doctor is my fifth and last.  I am not going to another doctor, I am going to stick with this one until he can get things right.

Jenni

[ancientmariner]

I think taking T4 alone is only a problem in that it doesn't provide everything that your own thyroid would if it worked right. There is a small amount of T3 produced by a human thyroid, that is used in some cells that don't convert the T4 to T3 (parts of the brain, for example). That's why taking Armour of even just synthetic T3 helps the brain fog. But, there are also T2 and T1, researchers are just starting to learn about their functions, plus calcitonin which helps bone strength. In my opinion, if you were meant to function on T4 alone, your own thyroid would produce only T4, so I figure I need all the other hormones, too.

[Ussie]

I am only taking 50 mcgs of levoxyl right now, because of just not being that hypo yet. And, I think my thyroid is still dumping hormones as it slowly dies. Even though the RAI was Feb. 2004, it still has a ways to go before I get really hypo. When this happens, maybe in about 5 or 6 years(I am guessing).My choice will be Armour for sure.

Don't even know how much RAI they gave me, and it was just 1 capsule I131.

I was taking something similiar to thyroid S, but it just made me hyper. Took me 6 weeks to recover from that.Boy, I hate that nervous sweaty feeling from being hyper.

[JDrake]

Are you using Armour?  I wish I could, it seems to have done alot of good for alot of people.  I tried taking it sublingually and swallowing it, both ways gave me a stomach ache and made me nauseous.  I am wondering if Synthroid and Cytomel might be an answer for me?  I asked my other doctor about Thyrolar and he said he had never heard of it.  Go figure.  Now I see why so many people with hypothyroid treat themselves!  Glad to hear you are doing well!

[JDrake]

I will ask the doctor about Thyroid-S when I go in today and see what he says.  I am going to see him because his wife has Grave's Disease and he is treating her, so hopefully he will be sympathetic.  Why is it that the T4 doesn't work well for so many people?  And why do doctors treat everyone with T4 instead of on an individual basis, we are not cattle, you can't just herd us around and stick us with T4 meds and expect the same results for everyone.  This is so frustrating!  Thanks for listening!

Jenni

[Ussie]

I had a large goiter before being put on PTU, and after awhile it got smaller.

It has been such a horrid time since having RAI. And, that is because of not being able to find a doctor that knows about post RAI patients.

I have had to take care of my own needs without a doctor for almost a year. Right now I have one, but had to explain why my TSH is so suppressed. Then, he gives me a T4 test while I am on Estrogen replacement, and Estrogen can cause a higher T4.Should have had a Ft4 and Ft3.Grrr!!!

Of course, so far I feel pretty good. Have to keep a close watch on my body temperatures and pulse. Mostly my body temperatures.

[JDrake]

I am going to see yet another doctor today.  I am hoping he will be able to prescribe me something besides levothyroxine, I am on 150 mg of Synthroid.  Dr. Mark said that if I increased from the 125 mg to 137 mg or 150 mg that my hair wouldn't fall out, well he was wrong (sorry Dr. Mark), since my increase to 150 mg I am losing more hair.  I wish I could take the Armour but for some reason it doesn't agree with me, I have the worst stomach ache and nausea from it.  I have heard that Thyroid-S or Westroid is suppose to be another good dessicated thyroid hormone, do you know much about it?

Jenni

[ancientmariner]

I only know what I've heard at other forums about Thyroid-S and Westhroid. I think the basic difference is the fillers and binders used to make the medication. I also have heard that Thyroid-S is cheaper than Armour and seems to be about the same strength. Too bad the Armour gives you a stomach ache - have you tried taking it sublingually? I do it that way because it doesn't interfere with other supplements I take, but maybe that would be easier on your stomach?
Best of luck finding abother doc and getting what you need to get well!

[Ussie]

I had thyroid tests done. My TSH was suppressed under 0.01(which has always been suppressed since Graves disease(took PTU for two years, then RAI Feb.2004). My T4 was 11.3 range 4.80-13.90. I feel just fine right now.No heart palpitations, pulse at rest is 60.

Also, I am on estrogen replacement, and have heard that estrogen can interfere with the T4 test, making it show higher.

My doctor only checked TSH and T4.

[ancientmariner]

Oh, I can so sympathize with you. My endo treated by labs, and as soon as they were in range, the same problems were suddenly not thyroid-related. I switched to natural desiccated thyroid in February, found a different doctor, and have been increasing the dosage. I'm now at 3 grains (180 mg) desiccated thyroid, and feeling better than I have in a long time. There's still room for improvement, but I feel as if I'm making progress.

[JDrake]

I never tried the supression therapy because my endo at the time told me I have a large thyroid and the anti-thyroid drugs pobably wouldn't do me any good.  Well I would like to tell him that the RAI definitely didn't do me any good. This is like living a nightmare you can't wake up from.  Not only am I hypo for life but I have to watch what I eat because I will gain weight in a minute, my hair is falling out, I have back acne and I suffer from depression.  All of those symptoms never existed until after the RAI.  And now the doctor wants to tell me that none of the above symptoms pertain to my thyroid.  Yeah right!  They just appeared out of the blue?  I don't think so!

Jenni

[Ussie]

Yes, taking RAI was just a big mistake for me too. Should have stayed on the antithyroid drugs, but most of the time was hypo on them.