[MNMama]

in reply to: Post RAI treatment 2 days and eye pressure..Help?? #1169761

Hi:

I have had RAI twice and have had eye pressure and my eyes ached for a week following treatment both times. I do have to say that mine was temporary, and did go away both times. I do have some peri-orbital edema currently, but (knock on wood) no eye protrusion, but I have had this for a year and a half and it was indeed worse when hyper. I also noticed as soon as I became hypo, my actual eye LID had a very puffy look which was a new symptom for me. This eyelid puffiness has gone away since I have been put on replacement meds. I had my first treatment almost a year ago and the second RAI about 7 weeks ago. My eyes were much more sensitive to light, ached, puffy and watery when I was extremely hyper. I hope this info. helps ease your mind, it could very well be related to your higher levels right now after RAI and may get better in the weeks to come. I do know that it is important for your doctor to watch carefully so you do not become extremely hypo after RAI which can make your eyes worse. I was started on levothyroxine 3 weeks after my second RAI as I became hypo very quickly after my second treatment, but I did alot of research and recognized the hypo symptoms and called my doctor and she had me go in for blood work early which was good as I was VERY low. Good luck and Happy Holidays!

[MNMama]

in reply to: RAI & Goiter Shrinkage #1169829

Hi:
I had a large goiter before my first RAI in January of 2011. I would say my goiter shrunk 75 % after the first RAI. This reduction did not happen overnight by any means, but within 2 months there was a major difference and it just got smaller and smaller after that. I did have to have a second RAI, because the first one did not quite get me to the normal range, and now (6 weeks after the 2nd RAI) I can feel my trachea bone on each side and can hardly feel my thyroid at all. I hope this helps. Also, keep in mind that I did not have any cysts or nodules, just a large, diffuse toxic goiter my measurements from the ultrasound were right lobe 5.2 x 2.3 x 2.3 cm. Left lobe 4.7 x 2.2 x 1.8 cm. The isthmus was thickened and measures 7 mm.

[MNMama]

in reply to: New here. My journey with Graves #1062224

Ok, first day on this medicine and I cannot say that I like it. 45 minutes after taking it, I felt like I revved up, jittery. I could deal with that and it was gone in 4 hours. Now, tonight, I feel like my strong heartbeat is back at 76 bpm and it has been nice and mellow for 2 weeks running at 68 bpm. Hmmmm, this is only day one at 75 mcg. Is this common, will it quit if I am so low with my Free T4 why would my heart be acting like I am hyper???? Confused.

[MNMama]

in reply to: New here. My journey with Graves #1062222

HI ALL!
Well, I’m happy to report ( I think….) that I am now hypo after my 2nd RAI treatment, and it happened in 3 1/2 weeks. I was smart and noticed the "unusual symptoms" called the endo, she had blood done and these are my NEW results.
TSH is NORMAL at 0.3 (0.3-5.0) and my Free T4 is LOW at 0.46 (0.55-1.12) now she did a TOTAL T3 which is LOW at .56 so I don’t have the ranges for the total, as I have always had FREE T3 done, but she said they have been having problems with that test lately, so went with this one….
ANYWAY, tomorrow I start a bluish, purplish pill (generic levothyoxine) of 75 MCG and will be retested in 4 weeks. I am to call her if I experience hyper type symtoms again OR if I feel worse hypo symptoms, but she sees me dropping even more and said my dose for my weight should be 100-112 mcgs so we will start here and go from there in 4 weeks according to labs at that time. What do you all think of this starting dose and the 4 week lab check? My symptoms are not bad, major muscle cramps at random times, puffy eyelids and fingers, HEAVY monthly friend that has visited me again this month (grrrrr) and starting to feel cold and shivery…. otherwise, energy is still good, but I hope I didn’t just jinx myself by saying that….. Comments welcome on my new journey of replacement meds., I have a feeling I will be needing you guys alot in the months to come! Is 75 mcg a typical starting dose, I know she was contemplating 100 mcg as a start, but then changed her mind….. scared to pop that pill in the morning for some reason, but I’m gonna! lol

[MNMama]

in reply to: New here. My journey with Graves #1062221

Hi all, just wanted to fill you all in on how I have been feeling since my second RAI treatment about 2 1/2 weeks ago. Last week, for maybe 5 days, I felt PERFECT, and I mean PERFECT! Well, now I am noticing some things going on. First off started with slight constipation (not bad, just different), last night I had ankle pain in my right ankle, today my lower back hurts, stiff and achey around into my hips. MY eyelids are very puffy in the morning and so are my fingers, they do subside as the day goes on but definitely noticeable. My appointment with the Endo. is not until after Thanksgiving (6 weeks post RAI) but she said I could call sooner if I feel tired, cold and slow. I don’t have those symptoms yet, but these aches are annoying! I am going to wait a week and see if it continues and go from there, but all in all, feeling great! LOVE not having to take the atenolol anymore, my heartrate is back to normal and so is my body temp.

[MNMama]

in reply to: New here. My journey with Graves #1062220

Hi all, I am just updating. I went for my second Uptake and Scan yesterday (I am 9 months post RAI #1). This time I had a 24 hour uptake (in Jan. I had a 4 hr. uptake). Anyway, I am sitting at 61% and am scheduled for my second RAI on Oct. 20, next Thursday. They said they are going to give me a higher dose (maybe 15 mci) as my gland is still quite active. My endo said that my goiter was just too huge to take care of it all and my numbers were just too high, so a second treatment is not too unusual in those cases. I am currently sitting at TSH < 0.1, (Free T4 is 2.09 (0.55-1.12) and Free T3 is 7.0 (2.0-3.5), I have come along way from where I was in January, but just didn’t quite make it to normal levels. I just can’t wait to get all of this behind me, my heart was good in September and was only needing beta blockers about 4 times a month, and just a tiny bit. But now, I am needing them daily again…. I will keep you all updated on my second treatment, they are expecting me to go hypo fairly quick and the endo has me scheduled for a followup in 6 weeks post, but said to call her sooner if I am tired, cold and slow. Oh, and my endo also had me visit with a graves opthamologist about my eyes, I personally think they are ok, MUCH better than when my Frees were so high, but my vision prescription just keeps changing…. and they said I may have to quit wearing my contacts and go to 100% glasses.

[MNMama]

in reply to: Story and Looking for Input #1169334

BMW2002 –
I read your story and it almost brought a tear to my eye. I was diagnosed with Graves Disease in December of 2010 and was on the verge of a thyroid storm. I had been feeling the "symptoms" for about 2 months before I went to see a doctor,as I had just lost my job in October due to downsizing and had no health insurance at that time. I developed a HUGE goiter in my neck and that is what finally made me go in ( I knew it was my thyroid then). Anyway, long story short, my blood tests came back at TSH <0.10 my Free T4 was 5.33 (0.55-1.12) and my Free T3 was > greater than 28.0 (2.0-3.5). I was told I need RAI ASAP. I had the RAI at Mayo at the end of January. My numbers dropped and dropped and I was feeling good (not great, but much better). I am now 8 months post RAI and my numbers are very close to where yours are currently. My TSH is still <0.10 and my Free T4 is now 1.09 and my Free T3 is 7.0. I feel good and have finally been able to get off of my beta blocker, but it seems like every 2 weeks my heart will go crazy and my thyroid will swell again, so I want all of that to quit and need to get back to normal. My primary care doctor says no more blood tests from her and that I need to go back to an Endo. to see what is going on. I am seeing the Endo. this Monday and have no doubt in my mind that I will request a second RAI. The anti – thyroid drugs scare me too! I realize that there is only a 1 or 2 percent chance of severe side effects, but I have been in that 1 & 2 percent many times in my life, so no way am I taking the chance with my liver. My ex-husband died of liver failure and I will not even subject myself to the minute chance of it…. I also look at it this way, the way my numbers dropped the first time, I should be hypo with a second RAI (and my current numbers) in about 4 weeks, so why stay on ATD’s for a year or so. This is just my opinion. Your story is wonderful and your wife is lucky to have a such a great husband. Keep us updated on your decision, I will be curious on what you decide.

[MNMama]

in reply to: New here. My journey with Graves #1062218

I have a question for all of you experts out there. I just got the results from my latest bloodwork. I am now 7 months post RAI. My doctor ordered a Total T4 this time for some reason (it could have been a mistake) since I have ALWAYS had the Free T4. But anyway, the Total T4 came back at 10.2 (ranges of 5.0-12.5) this is Normal.

The last 2 weeks, I have been feeling really "weird" like spacey, floaty, just strange in the mornings. These feelings seem to subside by noon. I have also been waking up frequently during the night, headaches, arm muscles ache sometimes, HEARTBURN where I just got put on Aciphex because I was just told I now have GERD.

So, my question is do the total T4 and Free T4 kind of co-inside? I mean if my total T4 is showing normal, could my Free T4 still be high if they would have done the correct test or would that have been normal too??? Or should I just be happy to hear the word normal? lol –

Also, should I request a TSH test be done since it’s been 7 months since RAI and see if it has come out of the "undetectable 0.01 range" ? Thanks in advance!!!

[MNMama]

in reply to: New here. My journey with Graves #1062216

Well, I have just hit my 6 month mark post RAI on July 29th, and just got my results back, I am still hyper, although still dropping. My Free T3 has taken it’s biggest jump down since April. Anyway, My PCP has referred me to second endocrinologist in Rochester. I am sooo confused by this disease! I was expecting my Frees to be higher again, as I have been having more heart palps and rapid heartrate again where I have to take a whole atenolol per day, but my numbers dropped! When my numbers were higher in April and May, I could get by on 1/2 pill per day. Makes no sense to me. I also had an anxiety attack in the doctors office when getting my blood taken, never had anxiety before when my numbers were off the charts…. Sleeping has been changing again too, I seem to wake up frequently again during the night BUT nothing like when I had total insomnia back in December and January.

Here is my lab history: My labs ranges are: Free T3 (2.0-3.5) and Free T4 (0.55-1.12)
Free T3 has gone from: greater than >28.0 to 15.9 to 11.9 to 9.4 to 9.6 to 9.1 to 8.4 and is now at 6.3
Free T4 has gone from: 5.33 to 3.29, to 2.96 to 2.59 to 2.27, to 2.31 and now is at 2.25

Could all of these weird symptoms again be because my numbers are dropping? So confused with this latest Free T3 drop, I am tempted to tell my PCP to cancel the endo appt. because I cannot afford it, and just see if I eventually get there… Has anyone taken longer than 6 months to get even into the normal range? I will let you know what the endo says, My appt. is this Thursday.

[MNMama]

in reply to: Graves Post RAI and eye puffiness #1061595

Hi:
I had severe puffiness of my eyes when I was in the "height" of my graves disease. My eye lid (top and bottom) were VERY puffy in the mornings. The upper eyelid and the lower one had severe swelling where you could not even see that little part in the corners closest to the bridge of your nose. My endocrinologist said on my reports "periorbital congestion and conjunctiva injection" . It would be the worst in the morning upon wakening and then as the day went on, it would subside. This swelling went on until I had the RAI and my levels started coming down. My levels were extremely high, and they are now still high, but not nearly what they were in January. I do not have any swelling anymore and actually could see it getting better as my test results showed my numbers coming down. I hope this helps, I was soooo afraid of having TED, but only had some minor acheing in my eyes upon moving them, but as of today, not protruding or anything like that. I will say that my endo recommended using night time eye gel to keep them lubricated, but I did not feel that this helped at all….

[MNMama]

in reply to: New here. My journey with Graves #1062213

SNelson-

Yes, I am feeling WONDERFUL, except for the palpitations and heartrate that likes to get worse in the evening. I am trying to wean off of the atenolol BUT, cannot seem to. I am only taking 1/2 of a 25 mg. tablet per day. Otherwise I feel great. I have gained 9 of the 11 pounds that I lost back. I just never expected it to take this long, I have been following others that had RAI after me and are already hypo…. but then my numbers were extremely high.

Patti

[MNMama]

in reply to: New here. My journey with Graves #1062211

Latest update:

I am now 18 weeks ( 4 months and 2 weeks) post RAI. This is taking WAYYYY to long….. However, the free’s are still dropping….. very slowly…..I think I am going to tell them no more labs until I am able to get off of the atenolol as labs every four weeks is costing a fortune. The way I look at it, if I can go without the beta blocker, my Free T3 should be down closer to normal…..right?

My labs from yesterday are: Free T3 is 9.1 (range 2.0-3.5) and my Free T4 is 2.27 (range 0.55-1.12). So my Free T3 has dropped 0.5 and my free T4 has dropped 0.32.

[MNMama]

in reply to: The past 2 days I can’t stop crying #1061796

Hi Suzy-
I also had RAI in Jan. (Jan 28th to be exact) and am also still hyper. My dose was 12.4 mci. What was the dose you guys received? My Free T4 was 2.59 at my last lab on May 3rd. The normal range is (0.55-1.12), so I have a ways to go yet… Do you know your labs normal range? I also went through a little episode last week and was doing alot of crying. I just did it and felt better. It may have had alot to do with my Free T3 going up from the previous labs and me thinking that I am going backwards. BUT, my free T4 is still dropping. I have new labs again on June 1st. When do you go for new labs?

We have alot in common here and it is just great to feel so "not alone". This is a hard disease to deal with and a long one at that! I have a very busy summer and just want to be able to enjoy it. If I do not get down to where I need to be with my numbers, I will do another RAI. The medicine just scares me too much with all of the side effects, if there is a one or two percent chance of getting them, I will. I seem to always be in that one or two percent……

Keep us posted. Yesterday and today I feel better than I did last week, so that is good. I am just trying to accept that everyday will not be the same and try to just keep plugging along. I just get upset that this is ALL that I think about, it seems like is ruling my life. ” title=”Sad” />

[MNMama]

in reply to: New here. My journey with Graves #1062210

Thank you so much Ski for your reply! It really helps me right now to understand why people needed a second dose. I am staying hopeful that the first dose will work, and that this is just a "bump" in the road.

My Free T3 (which is all they really care about for me) has gone from greater than 28 (severe) at diagnosis, to 15.9, to 11.9, to 9.4 and then up a tad to 9.6. Normal labs ranges for Free T3 are ( 2.0-3.5 ) so you can see being at 9.6 I still have a ways to go to even get into the normal range……My Free T4 is consistently falling and has gone from 5.33 at diagnosis to 3.29, to 2.96 and now is at 2.59 with ranges of (0.55-1.12). A ways to go here too, this doesn’t seem to be falling number wise as quickly…

I am just hoping my Free T4 continues to drop as that’s what is converted to Free T3 correct? I figure with less Free T4 there should be less Free T3 converted? I hope this makes sense… Hopefully things will work out the way it is supposed to…. This faster heartbeat these last few days has thrown me for a loop as it had been around 68 bpm on 1/2 atenolol for months. Now it’s been running around 80 bpm again. NOTHING like it was at diagnosis (over 100), but to me seems like a step backwards. Maybe these spikes are completely normal ??

Again, thanks! You guys are so re-assuring and helpful! So glad I found this board!!!

[MNMama]

in reply to: New here. My journey with Graves #1062208

Thank you all for the responses.

Today (14.5 weeks after RAI) was awful! I have had a headache in my eyes for the last 5 days and now today had the rapid heart rate again, shaky, and had to take a whole atenolol. I have been on a half for months and now suddenly need the whole thing to calm my heart down. My thyroid gland gets puffy and then goes back down MANY times during the day. One hour I can feel it, then next I can’t.

I am sitting here bawling feeling like this is never going to end. I was feeling soooo great and now this. Warm weather is here and I just wanted to have a great summer! When I lost my job in October I lost my good insurance so I picked up my own policy and chose a 9,500.00 deductible (2 weeks before ANY thyroid problems), so this has also been a financial burden on me too. So far I have 4,500.00 racked up and paid. But just can’t imagine going through the uptake and RAI again.

SO now for a few questions. Can the thyroid try to fire up again before it dies??? For those of you who had a second RAI, why? Did your numbers drop like mine and then quit? Did they NOT drop much at all? Was it longer than 6 months and still hyper? Please let me know WHY you were given the second RAI.

Sorry for the pity post…..

[Author]

Posts