Hi Everyone! My Dr. just called me at work and told me that my thyroid is functioning normal except for a growth that is functioning hyperactively. He said we can either have it surgically removed or radioactively destroyed (just the growth). I asked him what HE would do if it were him and he said "um I think radioactive iodine would be better".......then he said "but let me call you back-I want to talk to the radiologist first." When I asked him if he thought we should check the T-4 and T-3 levels, he said "No-it wouldn't show anything different" I've had symptoms for years-could this growth have been causing them all this time? (He said this growth throws out the pituitary being the problem also.)
Just a refresher-this all started when my TSH came back low-Dr. thought Graves. My last T-4 was done 6-8 months ago and was also low. That's why I thought maybe we should check the T's again. I'm afraid they may accidently kill the whole thyroid --what would you do? Surgery? What should I ask/tell him-he will be calling anytime.
Last edited by copesherry; 05-15-2006 at 12:16 PM.
Reason: messed up heading
There is a poster on this board by the name of NikNakStylist, who has a similar problem as yours. She has recently seen doctors at John Hopkins on the East coast and has some really good information. You could post a messsage to her specifically asking for information using her name in the title space, or do a search on her login name for previous posts.
Good luck to you! Hope you are feeling better soon!
There is no way to target the radioactive iodine (RAI) to kill only part of the thyroid. In this procedure a pill or liquid form of "raioactive" iodine is given orally. The thyroid is the only organ in the body that absorbs iodine. (There is new research showing the eyes may absorb small amounts. I think the final say is not in yet though.) The thyroid uses the iodine to make thyroid hormone.
As such, the whole thyroid will soak up the RAI. And RAI will eventually effect the entire thyroid.
I recommend you thoroughly research RAI before you consent to this treatment. Go in with your eyes wide open.
IMO - do your research - you DO have time to do that and think it over, then make your decision. This isn't something you have to decide today, tomorrow or next week. Hyperkim is right and look up Nikki, too. Some on the board have gone through this - ask them questions.
"I'll make it"
Jewel TT 1/26/06 -Levothyroxine 75-88
I am going to do my best to help you with this as I just been in your shoes not that awful long ago. The 1st thing I would do is ask your endo for a copy of your last labs and post them here as such:
T4 your result (ranges)
T3 " "
TSh " "
Then start yourself a folder with questions, symptoms, test results etc.
They are your labs and legally you are entilted to them. Don't go by what the dr.s tell you like they are normal. I titered borderline for 2 years and in no way did I feel normal. Also have you had a sonogram, uptake scan or biopsy on your nodule? How do they know if it is hyperfunctioning?
I will try to sumerize what I have been through in 4 1/2 years as that would probably be the best advice I could give you.
I had my 1st panic attack after the birth of my 1st child and that was attributed to late post partum 6 months after she was born. I was put on paxil and sent on my way by my gyn. When she was 2 I started to feel better and weaned myself off the paxil. 2 weeks after that OOPS.....Prego again. 3 months after she was born panic starts again along with extreme fatigue. Weird but I now have 2 small children, a terminally ill Mother diagnosed with ovarian cancer so didn't think to much of it. I was always a "tired" person.
When my oldest daughter went to start nursery school I had to have a routine physical to become a helper. Went to my PC- Felt that my thyroid was "enlarged"- from here- sonogram- Nodule found on right lobe 1.5cm.
blood- TSH 0.746 August 2004
Nothing to worry about so I see an endo to keep an eye on things. This was in sept. of 2004..........................
Was feeling o.k. other than extreme fatigue and panic attacks- Went back to endo in August of 2005
Right lobe 2cm in diameter
Now starting to get interesting.......Symptoms are getting bad.........
No sex drive
These are the worst of what I can remember.
I then started to research. I found healthboards..a godsend it was.
TSH 0.01 (0.4-5.5)
FT4 1.9 (0.08-1.8)
FT3 588 (230 - 420)
By now I am feeling horrible. I express this to my endo at my next appt. along with lots of ????S. I ask her to do an antibody test for graves as now I have been researching and asking lots of ????S on this board.
Let me quote what she sends my PC-
"Given her previous history of a warm nodule on her right lobe I strongly suspect she has a hot nodule as the etiology. The patient however, has been fixating on worries about having "Graves" disease. From a practical standpoint we would treat them the same and so it is an academic point at best, however, to ease the patients mind, I will check the graves antibody to see if that is present as well"
So this is the attitude of my current endo-
TSI 114% (125% baseline)
I get my antibody test- Still confused-This is when I made the appt. for Hopkins.
My appt. took 2 months to get in but well worth the wait.
Dr. Todd Brown is who saw me. An hour and a half of LISTENING to me I am sent for blood-
TSH 0.01 (0.4-5.5)
T4 9.3 (4.5-12.5)
T3 213 (60-181)
and an radioactive uptake (RAI-U) to check on the progress of the "hot" nodule and to decide on my dosage of RAI ( just enough to kill the nodule)
In the duration of the test I asked the RAI-U how the nodule was lookin? He answered me that my entire right lobe was lit up and the left was starting and there was no nodule. I knew from research, and my "thyroid family" on this board that this was indicative of graves disease NOT A NODULE. My new endo confirmed it.
In graves disease- The thyroid is not the problem but a symptom. The antibodies from graves attack your thyroid making it sick. Killing the thyroid with RAI even a little will not treat graves disease. It will just kill your thyroid
slowly. I now was not open to RAI so I choose anti thyroid medication which will calm down the production of antibodies and the thyroid.
I am glad in a way that it has taken me so many years to find the right endo, and the right diagnosis. I did not jump into RAI (many times was gonna do it ask anybody here who has seen my previous posts) as it has taken quite some time for my graves to surface on labs. Nothing with your thyroid will happen quickly therefore YOU DO NOT need to rush into a permanant decision such as RAI or surgery. RESEARCH, RESEARCH, and when you think you have learned it all RSEARCH more. 80-90% of hyperthyroid patients test possitve for graves. RAI can aggrivate graves eye disease and stir up your antibodies even more than they are. "Thyroid for Dummies" by Dr. Alan Rubin is an excellant book to purchase for beginners. And many nights over and over again I have searched and searched this internet looking as yourself for answers to what I should do. Ask lots of ?'s on here even if you think its dumb- IT IS NOT........We have all been in some form of where you are. I hope I have explained things and if I haven't ask away- Endo's are a dime a dozen- If you are not comfortable with this one find another.
Sorry this took so long. I really wanted to cover it all in my reply-
(This is long but bear with me )Thank you to all who answered my post-I really appreciate the insight from people who have been there. Nikki-I've went through earlier and read your story and was pretty amazed at how similar ours are. I was too diagnosed with panic /anxiety appx 6 years ago-then 1.5 yrs ago had a holter monitor test and it showed a rythm / PSVT problem, so I go on Toprol, in the meantime I've had three doctors (including the gyno) check me for hyperactive -as I am thin along with the symptoms. My Dr. I have now has mentioned Graves more than once, but all tests came back normal. Now I don't know if they tested my TSH only or a complete panel, as I have never sked to see my results. Until...
I have been having leg pain -sometimes I limp, I have had all of the symptoms you mentioned at one time or another along with slowly blurring vision, and even seeing double once. I turn purple in the cold and almost pass out in the heat ( However, I do prefer summer to winter ) Dr. discards a lot of it -even looked out the window once and said "well it's cloudy and cold-probably feeling bad because of the weather" So I began to develop a distrust, and have thought of changing docs -
So...This last time (about a week in a half ago) he was running tests on inflamation etc. and I picked up my tests at hosp. my self- noticed he tested TSH: .302 (.340-5.60)
Went in for results and he looks back to about 8 months ago and said my T-4 was low at that time (I will ask for copies) and that he wanted to do RAIU to see what was going on. If my thyroid was normal, he would begin checking my pituitary. I picked up those test results as well. Dr. called me at work and well you know the rest. My RAIU says: There is a focal increased activity identified at the mid to inferior aspect of the right poleof the right lobe --consistant with an adenoma. Normal thyroid uptake of 24% Well the Dr. was to call me back, but he hasn't yet.I have been researching today and found that if a person has Graves and destroys the thyroid, then the disease may go on to attack the eyes since the thyroid is gone. That scares me. I think I'm going to demand more testing. I am so sorry to go on and on, but I am very tired very stressed.
Thank you again for listening and offering advice.
Everything will be fine. I know this is very hard to deal with. Believe me I have been told everything there is to be told. The most important thing that you can do for yourself is become VERY educated. If you are having ANY eye symptoms stay away from the RAI. I experiance problems with night driving, tearing, sensitivity to florescent lights, puffy eyelids and such. The only reason I agreed to RAI was if I did NOT have graves and the dr.s were 150% sure of that.
So basically my 1st RAI-U came back as yours. Like I said, it took quite some time for my graves to show on the labs. All my dr.s had INSISTED that I did not have graves in the beginning. My thyroid family on this very board was screaming that I did have it and I would not listen because I had complete trust in my 1st endo and I should not have. They saw it here when I did not.
Being in your shoes, I did demand more tests. This is your body and only you will live with the consequences of the choices you make for it. I am very glad to hear that you want to further investigate what is really going on.
Post your labs when you get a hold of them. I would really be interested in seeing your numbers. Your TSH is definetly going down and that shows hyperT.
Thanks Nikki-Your posts really help. I will post any lab results when I get them. I have been night blind for years-I don't even drive at night if I can help it. Also sensitive to light and can't see far way because of the blur. I never associated that with thyroid. I have had a sore throat since having the RAI uptake and a hard time swallowing-but not major pain or anything-just annoying. Wondering if I 'm getting sick or if it is from the test. The good dr. still has not called me( he said he wanted to talk to radiologist). On top of feeling like crap, I have to attend an expulsion hearing for my 14 yo tomorrow. Seems like when it rains it pours. Thank you again for everything! I'll keep you posted, and am glad you're doing better.
Keep on your dr. I know I drove mine crazy all the time. I would call everyday sometimes 3 times a day.
I am really glad your not jumping into treatment until your options are all weighed.
As for me I wouldn't say I am feeling better yet. Day 5 on meds. Today was a rough one. I just now crawled out of bed to eat and drink something. I was very tired, achy, and tummy upset today. I am sure my body is just adjusting so I will hang in there with it.
I am going back to bed so I will check your post tomorrow. Good night.
Nikki, i'm so sorry you're feeling rough tonight. Maybe it will take a couple of weeks to get the GOOD effect of the meds. What are they? I know the lady I work with (she's hypo) said that she is on synthroid, but has tried two others and they don't help her and make her feel really bad. She also feels bad when she takes a generic brand. Do you have anyone to help, or just check on you?
Well I hope you get some R&R tonight and wake up feeling great!
Thank you for your concern. I am married so I have my husband here although I'm suprised to still be married through graves, but I must say he is a saint when I need him to be. I feel a little better this morning but then again I haven't taken my 1st dose today. It is coming at 10:30 a.m. I am taking Methimazole which is generic for Tapazole. 10mgs but I have started spliting the dose to every 12 hours to see if that will get my levels normal. Right now I am using up the remaining hormones in my body and then the meds will prevent more hormone from being produced. I guess that's why I was feeling sick. Just gonna take some time- I will get through this.
Sherry, sorry you having to go through all this! I am glad you and Nikki found each other.
Nikki, I know you are going through a lot right now, so nice of you to post your story for Sherry. Yes, your hubby is a saint!! Tell him thanks for being who he is!! You picked a GOOD one. And now, a good doc!! Hope you will be feeling a lot better soon.
Both of you take care. Saying prayers for everyone going through thyroid problems!
"I'll make it"
Jewel TT 1/26/06 -Levothyroxine 75-88
Thank you for your reply- It makes me feel really good if I can just help at least one person get through this horrific graves. I too am glad that we found each other- This is the 1st person I have met going through a similar situation so that in itself is reassuring. Take Care-
Hi Nikki! Hi Jewel! I'm here a little early today (my day off work). I'm glad to hear your feeling a little better this am, Nikki. I know it's 11:00 now, medicine doing okay so far? I am so appreciative and glad that I have been talking to you and the rest of the great people on this board. That alone makes me feel more at ease, and not such an urgency to do anything just yet.
I too have a great husband, so I know you feel as lucky as I. He gets tired of hearing it sometimes I'm sure, but he still listens and offers a back rub when I need it. I also have 3 teenage daughters, one who is really rebelling right now, so I'm at my wits end with that-meeting at the school at 1:00-sound like fun. She is severe ADHD and I've been looking at that board as well for help with her. Haven't posted yet, though. I have a feeling things aren't going to get better anytime soon with the stress But I am thankful that I have my girls-honestly-usually they're really great! I am going to TRY to get some housework done since noones home right now. Ohh--by the way-no my Dr. has not called me again. My husband even went in yesterday for a check-up and Dr. didn't say a word! Think I should call?
I know the drill with teenagers!! Had 5 in my house at one time, one with a learning disability, two getting into drugs, and just teenage-itis! Hang in there - you really have a plate full and with the thyroid problems I don't see how you do it!!
I would call the doc - he probably didn't say anything because:
1. He can't - you know all that privacy stuff
2. Time element - why, if he has a waiting room full of patients take time to discuss you with your husband if your hubby didn't ask?
As Nikki says, she called 3 times a day sometimes and at least they know you MUST have a problem or you wouldn't be calling!
Again, hang in there. My kids are doing great now - finally!
"I'll make it"
Jewel TT 1/26/06 -Levothyroxine 75-88
It's me again-I called the Dr.'s office and he got right on the phone. He said he did talk to the radiologist and he knew I was concerned about "killing" the whole thyroid instead of just one spot, the radiologist was not very supportive of that method, so he said he wants to refer me to one of two surgeons in Cincinnati that are very experienced with thyroid surgery. However, he still wants to "think it over a little more" first, and that he hadn't forgot about me.
Went to the meeting at the school-waiting for them to call me on results-Ally's (14 yo who got in trouble) Principle and Guidance Counselor were pulling for her, as was the Superintendant, so we'll see how it goes. I'm glad I wore deodorant today because I was sweating bullets in there-glad it's over and I'd better never have to go in there again! Didn't someone once say teens are brain damaged?
Just wanted to let you guys know what the Dr. said-what do you think?
Glad you reached the doc and he talked to you. Bet his "thinking it over" is actually researching - which is great! When they want to find out more it is such good news for us patients! They don't want to act like they don't "know" something. I know it has to be difficult to wait. My heart goes out to you.
About the teenager and the brain damage - actually, the last part of the brain to develop is the frontal lobes. These control the decision making process and reasoning. We can use a rational processes when facing emotional decisions and teenagers can't yet think through things in the same way. They are still developing - and it is so difficult when they begin to LOOK like an adult, and generally make good decisions. They don't think ahead. THEY think they are all grown up and should be able to do whatever they want. Which makes it even more difficult. It's a gradual process to adulthood.
The first part to go when you age is the last part to develop - that's why older people sometimes have a problem making decisions. (I discovered this while dealing with my aging parents.) And believe me, it is a LOT more difficult to deal with your parents being this way than your teenager - especially if you live together - which we don't.
You'll get through the teenagers eventually, but they can sure tax you!!!!
"I'll make it"
Jewel TT 1/26/06 -Levothyroxine 75-88
I guess him thinking it over is NOT a bad thing. At least he's not rushing you into anything permanent and that is great. Has he given up those labs to you yet?
As for teen stuff- I am terrified.........I have a while to prepare for it but are you ever prepared. My oldest daughter is 5 going on 30- Way to smart and mouthy already. My 2 year old daughter is an Not that I don't love them equal but it is easier to have at least one who behaves.Hee-Hee....
I am doing o.k. today- Boring actually which is a big switch for me. No sick feelings just tired and that is livable. The first couple days my tummy was upset so this is good.
Hi Nikki and Illmakeit-I'm glad to hear you are feeling better Nikki. Well I must be between you two-sounds like Illmakeit has grown children and Nikki has little ones . Gosh -I remember like yesterday -let's see-I would have had 5, 3, and 2 year olds at once! I can't for the life of me remember how I did it! I used to be so much more patient. Hey Illmakeit- are you sure patience isn't the first to go? Or is that lost during the teen years?
I am glad I talked to the Dr. today, and I'm glad he's researching. Makes me feel so much better! Still haven't gotten my housework done and now it's time for dinner-I'll get back here later. Take care and thanks!
Don't ever be hard on yourself about your housework. If you get behind it's because your sick. This was a very hard thing for both me and my husband to accept. Some days it is all I can do just to take care of my girls but in the scheme of things that is the most important thing for me to keep up with.
My house majority of the time looks like a bomb hit it and I used to just sit there wishing I could get up and just clean it. After vaccuuming I would just about collapse. Sweating and out of breath.
Today was a descent day for me. I was outside about a total of 3 hours today. Not heavy digging but light weeding and moving some flowers around and I did NOT feel dead after doing it. I did not sweat profusly for a change, or feel like I was gonna pass out. If anything I actually could have kept going but I lost my sunlight.
So there is hope- We can beat this graves thing..........Gardening has been therapy for me for years and to be able to work in those beds again was a wonderful feeling today. I know the meds are not in full force yet but today seemed like a window of what is to come. I wasn't as grumpy today or flip with my husband for a change. It was nice