[janis4]

#1059553

Hi my name is Janis, I had my Rai 12 weeks ago without incident. I felt very hyper for a few weeks after,then little by little i started feeling better.At the six week mark I went for my first post RAI thyroid panel. I was shocked to find out that my bloodwork did not change at all in six weeks. My tsh was still<0.005 T3 T4 little to no change.But I felt better then I had in a long time. One thing I have learned about graves disease is to expect anything.I felt good and thats all I cared about.I was to return in six weeks for more blood work. At four weeks I noticed My eyelids were slightly puffy,no big deal.Then 3 days later I wake up with a migraine, severe fatigue, joint pain,eyes so swollen I can barely open them,felt terrible. Went to endo that day, He thinks It might be flu!But does blood work to see if I went hypo. Well TSH 59.030 T4<0.5 T3 22. put on synthroid 88 mcg to return 6 weeks for follow up bloodwork. I fully expected to go hypo.However I never expected it to happen so suddenly. I was fine then in 36 hours felt like I was run over by a bus. Has anybody experienced this sudden onset of symptoms. I also wonder if my prior bloodwork was acurate. and maybe I was slowely going hypo and never realized it.any thoughts would be appreciated. Thanks Janis

[snelsen]

#1175679

Wow!! that is quite a radical lab change in three days. But your symptoms sure reflect hyPO. It will take more days than you want it to take to really evaluate how you feel. But I am thinking you are more than ready for Synthroid! You may already know this, but try to take it first thing in the morning, and if you take supplements, be sure it is at least 4 hours later (calcium, vitamins,etc.) They can interfere with the metabolism of Synthroid.
It is so frustrating. Feeling hyper is terrible. Speaking from my own experience, I hated feeling hyPO so much, that I longed to feel a bit hyper again!
HOpe you notice improvement soon. It may take a while to get the right amount of Synthroid.
Shirley

[beach45]

#1175680

I went hypo fast all of a sudden post RAI also; it was about 4 months post RAI; I was getting clumsy and found I could no longer drive due to confusion and I knew something was wrong the month before my TSH was 60. Prior to that my TSH was like 0.001. I told my endo to please test me earlier as I knew something was wrong as I had a cross between hyperthyroid and hypothyroid symptoms. Those first 3 months post RAI I felt really good and wish I could go back to that. I got on Synthroid 75 mcg, then 100 mcg and now on 125 mcg; 7 months post RAI. Having issues though with weight and joint pain especially in knees yet my TSH has gone back down very low again, FT4 is fine and my FT3 is low for me. Things works differently with every person though so it is not good to compare and levels can change that quickly as prior to RAI I was on a Methimazole up and down rollercoaster of levels for 23 months. I had all the symptoms you did and yes all of a sudden I had that run over by a bus feeling too! All very normal at least going by what I experienced; it does get better as long as you are being dosed correctly by a good endocrinologist or doctor who doses correctly and follows you and listens! Good luck!

[janis4]

#1175681

Thanks for the responding so quickley.I am comforted knowing that this is not so unusual. In my experience, I find most people know very little about Graves disease, so rarely do I discuss it with anyone. But if you have been there you know all to well how devestating it can be.I suffered for two years being hyper. When my endo suggested RAI I jumped at it. I do not regret it at all.I did not look at the big picture. To me being hypo would be a welcome relief, So I guess this is the next chapter,I will stay the course and do what i have to to recover. thank you again. Janis

[mvk]

#1175682

Hi Janis4,

There are some real early birds on this forum this morning! I thought I would give you my history as well so you know how crazy this can all go. I had RAI on 4/23/12 and my TSH after was still lagging behind until around 4 months when I tested and it was 72. I think because of my age (62), my endo started me on a really low dosage of Levo (.025) in July which obviously didn’t help. I am now on Levo .175 and my labs look a whole lot better. You are right in my opinion that few people out there know about Graves much less understand it. I do think my TED got worse when my TSH skyrocketed. I am trying my best to control it with drops, gel at night and eating a good diet. I am also taking fish oil which is supposed to be an anti-inflammatory. Time will tell I guess. You are right, this forum is really a good source of information and I think companionship via the web. I am very grateful for it many times over. Good luck on your journey.

mvk

[janis4]

#1175683

Shirley,I can relate to wanting to feel a little hyper. But we really just want to feel normal. I do believe we will get there ! Thank you for your kind words and support,I wish you a speedy recovery. Mvk, I turned (60) this week this was my birthday present HA! HA! I have slight envolvement in my left eye.I am hoping it does not worsen,I knew it was a risk. I have to tell you,
I have been a nurse for 20 years and new very little about graves disease.I learned the basics in nursing school thats it! So when my symptoms started I really thought it was stress related ,as I was working and taking care of my husband who was very ill.So it took me loosing 40 pounds, constant hand tremors,and a host of symptoms to think” maybe there is a thyroid problem”.As I have been reading alot on this disease, I am led to believe teds runs its course and can resolve itself. I do hope this is acurate.I wish you the best in your recovery. Janis PS, I am terrible on this computer sorry.

[Kimberly]

#1175684

Hi Janis4 – If you are still having eye issues, it would be a good idea to visit an experienced ophthalmologist to have a baseline evaluation done. The good news with TED is that most patients do not get the worst of the symptoms (severe bulging, double vision), but it would still be helpful to get this checked out.

Take care!

[janis4]

#1175685

Kimberly, I saw an opthamologist when I was first diagnosed 2 years ago.My left eye was 2mm larger then my right at that time. After I was stabilized on methimizole it appeared to resolve. However just prior to the RAI it seemed more prominent. Now it seems to be decreasing. I plan on seeing an opthamologist next week. Things seem to be changing very quickly so I am not going to take any chances. I am a terrible patient as my physician pointed out.I need to be more involved in my own health. I thank you for your advise and I plan on doing as you suggested. Janis

[Jules]

#1175686

Thisis exactly what happened to me. By 8 weeks post 20McI I was hypo at 78 TSH. doc said he had never seen anyone react so quickly.

I went through the wringer trying to get back to normal after that. The Meds did not agree with me. I felt like hell just froze over.

In hindsight: Personally I think if we are given RAI we should be given a FREE T4 and Free T3 test every 2 weeks after RAI. As soon as those numbers get in the normal range start the replacement Meds. I would rather deal with it that way then a holy heck crash like I experanced. My eyes started to react with in 3 days of RAI. Hypo feeling with in 4 weeks however my TSH and T4 were normal. There really is no standard of care of RAI. Most docs order some where between 5 and 25 MCI and hope for the best. While we have to endure their cure.

[janis4]

#1175687

Jules, Thank you for your response.A TSH of 79 I could not imagine how bad you must have felt.As I read through the forum I am taken back by what you and everyone has endured.I do agree that there are few options we have.Also physicians need to be more informative with their patients.I am struggling A little bit but nothing compared to the stories I have read on this forum. Right now for me it’s synthroid vs RAI.The synthroid is trying to raise my levels while the RAI is busy destroying my thyroid. It will take time. I wish everyone a happy and healthy holiday season. Janis

[vanillasky]

#1175688

How long post RAI do you take the Synthroid? I am thinking about blowing up this gland. Feel sick again this week. I am so tired of the ups and downs, the tapazole, the Atenolol………sighs.

My appointment is March, 13. I am thinking about asking him for the “pill.” I cannot stand this anymore!

What about isolation? How many days?

Karen

[Kimberly]

#1175689

@vanillasky – It takes varying amounts of time (one recent article says 6-18 weeks) for RAI to do its work in destroying the thyroid gland. Once you do go hypo after RAI, your doc will make his/her best estimate at what the initial dosage of replacement hormone should be, based on factors such as weight and age. Then you will have a follow up set of labs done in 4-6 weeks to determine if that is the correct dose for you. It *does* take several weeks before you know if that is the right dose, because it takes some time for thyroid hormone levels to build up in the body – and it might take a few iterations before finding the “sweet spot” that stabilizes your levels and gets you to feeling well again.

These are some very general guidelines from the American Thyroid Association regarding safety precautions following RAI. Your doctor or nuclear medicine specialist would need to give you more specific guidelines, as they can vary from state to state and facility to facility.

You will want to look at the tables labeled “hyperthyroidism” and not the ones labeled “carcinoma”, as patients with thyroid cancer receive a significantly larger dose.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/thy.2010.0403.pdf

Take care!

[janis4]

#1175690

Hi karen, I took the RAI on september 9 2012, I was told to keep a safe distance from others for three days I can’t recall the exact distance.But i stayed in my room while others were in the house.I didn’t want to take any chances.Children are especially vunerable as there thyroid gland is not fully developed.there was no cooking for anyone ( liked that) I have a my own bathroom so there was no problem of contamination. Basically I hung around for three days and relaxed. I just started synthroid last week.I was told by my endocrinologist I would be on it the rest of my life. I do not have a problem with that, it has no side effects for me,and it is a very cheap medication if insurance is a problem. This is only my experience everyone if different. Your best resource is your doctor. I don’t believe RAI is one size fits all,everyone has a different experience.The duration for thyroid replacement is up to your physican. I wish you the best . Janis

[vanillasky]

#1175691

Thank you Janis and Kimberly. You have answered all my questions and I appreciate it!!!!!!!!!!

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