[beach45]

in reply to: Vitamin D & Autoimmune Thyroid Disease #1173418

My Vitamin D was very low right prior to Graves a couple years ago and I live in SC yet that Winter it was unusually cold and I was inside a lot. My doctor said get out in the sun more and when I did that summer the Vitamin D levels came up pretty quickly yet Graves progressed… He was against supplementing with Vitamin D (D3) unless absolutely necessary. Also I heard best to take the Vitamin D along with Calcium;only what I read personally. Bottom line to me what is important is working closely with a doctor on this if it does become an issue. There are also all kinds of studies out there about autoimmne and Vitamin D. Always learning something new!…beach

[beach45]

in reply to: Thyroid Hormone replacement dose AM or PM? #1174057

Thank you for sharing this; I just started 75 mcg of Synthroid a week ago this past Monday after hitting a bad hypothyroid bottom about 4 months post RAI.

I discussed taking Synthroid in the evening at bedtime with my endocrinologist as I too had read some people had better results with absorption. My endocrinologist said this is a good idea and fine;

He also had thyroid issues so is familar from experience I am guessing.

Plus again as we all know no calcium or iron 4 hours before or after T4 and my endocrinologist said even some foods which contain such; plus he even recommended 4-5 hours in between.

Always new information coming out! beach

[beach45]

in reply to: Post RAI 8 yrs on Synthroid #1173736

It is interesting as I wonder sometimes if more people do need extra T3 then being detected post RAI or TT? Or recently read sometimes after 6 years on T4 alone post RAI that some patients do need added T3? Then I hear that to be careful with T3 and that most people convert T4 to T3 just fine? It gets confusing to me anymore and wonder if more research will be done to work on a more effective combo T3/T4 therapy to fit thyroid patients’ needs. I think more changes may come in time. I have no clue yet for myself as I just started T4 therapy 16 weeks post RAI as I crashed very badly to hypothyroid and kind of hoping I do not need anything extra yet I guess only time will tell! Good luck to everyone!

[beach45]

in reply to: Eyes Burning while swimming #1173955

Your welcome and good luck with this Darcy!

[beach45]

in reply to: Eyes Burning while swimming #1173953

I had this problem last summer; I was on 15 mg of Methimazole at the time; not only chlorine in pool burning also the salt water from ocean. Never had that before and then diagnosed with moderate thyroid eye disease in late 2011. I was told just keep using the lubricating drops by my thyroid eye doctor as the TED is making my eyes very dry. In fact off of the Methimazole since May 2012 when I had RAI and using the lubricating drops, I am finding both pool and beach water not as irritating. I was not used to that intense of burning either; good luck with this…beach

[beach45]

in reply to: Hypo Might Raise TED Risk? #1173900

VanlsleGal,

Best of luck with this; I personally did fine; things worked out okay so far for me and now at 15 weeks post RAI I just found out today I am severely hypothyroid (I had 15 mllicuries/15 mCi). Actually two endocrinologists told me that they give even higher for Graves like 20-30 mCi to make sure it is totally destroyed from what I was told by them.

I only started experiencing eye issues this past weekend and I have moderate TED; I just found out my blood work from 8/15/12 (I have it mailed to me) is very hypothyroid; I see my endocrinologist this Wednesday and they told me to sit tight as I will be going on Synthroid either tomorrow or Wednesday. I was wondering why these really crazy symptoms which were starting to get my attention this past weekend and my eyes are getting really puffy.

Nurse just told me hang on as once I get on Synthroid and in time, things will get better; she said the weight thing will be last!

Just to say, my TSH in one month went from 0.005 to 52.540 as I won’t even go into the other numbers for FT3/FT4 (!) yet nurse said these exaggerated numbers will happen with thyroid die off, not to worry.

I had to put a stopper at the bottom of my bedroom door to keep the one cat from pulling the door. He’s a momma’s boy; my husband took good care of them yet they prefer me. I did not want to put them into the vet to board as that is just even more stressful for them. I had thought of the hotel yet I opted not to last minute.

I had an interesting ride on Methimazole/Tapazole. 20 months of trying and working with two different endocrinologists (one left my area) and an internist yet never could get me right or moving toward remission. Lots of weight gain and extreme moods.

It will all work out just fine. I was anxious and concerned pre and post RAI. Now after talking to the doctor’s nurse today I really feel there is going to be a light at the end of this tunnel! Sending positive vibes out to you and please keep us posted…beach

[beach45]

in reply to: Sort of Terrified about RAI #1173914

Hello VanlsleGal,

Yes I had fear back this past Spring when told I needed to do this when 20 months of terrible up and down on Methimazole/Tapazole (MMI) did not work to get me into remission. I was crushed as I was hoping for remission. I was also miserable on MMI (that is me though). Yet for me I was in terrible shape when I started the MMI to begin with back August 2010 and possibly I had too high hopes as it works for some better than others and doctors were not willing to give me extremely small amounts either upward or downward to find where they could maintain some balance. TT was out for me; I had a miserable 9 month recovery after I had one ovary and a cyst removed in Spring 2009.

I thought the same that last minute I would bolt when the pill came out in the hospital and that I would contact this excellent surgeon here I already had met with who has a excellent success rate with TT. Yet then I started to calm down. I did my research and talked with many medical practitioners, people who had RAI and reading different medical journals and decided I would be very surprised if I developed cancer; like I said I know people 20 and 30 years post RAI, no cancer, living healthy lives; in fact I just spoke to my husband’s cousin, a doctor who had RAI 20 years ago; she talked to me this is no big deal and why would you have wanted to stay on MMI so long and why all these women who she puts under, she is an anethesiologist, for Graves she is very surprised as RAI is so simple. She took the pill a couple days later back at work, gained no weight and is in her 60s now (and watches diet and exercises) and to me like no big deal. She is very healthy. I saw her this past Spring and yes looks very healthy. Okay, yet her experience, her opinion.

Yes there are exceptions and people on any forums are the people who do have problems post RAI or TT and she admitted we are all so very different. She said the majority of post RAI people she runs into are doing great years later. Like I explained my weight issue especially in the middle to her; she did not have that at all post RAI. Yet I am also going into the change of life now in my 50s.

I would never try to talk anyone either into this as I could not be myself. Yet because my heart rate was so very fast, I was so heat intolerant, my moods were all over the place, before MMI my hands shook like I was an alcoholic and I could not write, my legs were just about to collapse under me and my internist originally brushed it off that it was just “hormonal” and I waited about 4 months before I really got tested for Graves. I was developing afib and could have gone into a storm eventually. When I look back at that and how calm I am now 15 weeks post RAI and from my research and everything I mentioned, I feel much better about this decision.

I am also seeing that my eyes may have actually been worse pre-RAI with my levels going up and down too much on MMI. That is me though and research apparently has not confirmed that thyroid levels changing effect the TED, yet there was something up; my vision may be improving as I had problems starting with my eyes way before Graves came out. Yet I also do acupuncture for my eyes and it may be helping and my doctors are okay with it as I am not going to promote natural means here though and I tell my doctors everything.

This is all very natural at least it was for me. I had relief once it was over. Now I hope for relief of my one issue mentioned moving forward once on T4 with a good diet and exercise plan which I already follow.

You hung on a very long time. I wish I had achieved some balance on a very low dosage of MMI. Yet three endos were telling me RAI or TT as it did not look promising for me and it was very difficult to deal with in my mind. I have to be careful not to read too much or listen to worse case scenarios as that was not helping me either. Or like a nurse practitioner told me from where I moved from, that the final choice is mine anyway! I had to weigh out risks vs. benefits based on everything I knew and talking with my medical practitoners. Maybe I could have found the perfect doctor to keep me on MMI indefinitely or maybe I should have chosen the TT route. Yet I made my decision and overall I am happy with my decision and I see a light at the end of this tunnel coming and you will too.

The beach sounds lovely by you! I live in the south here about 1-1/2 miles from the beach. Good place for me to sit and gather my thoughts and meditate.

Best of luck. Please keep us posted. Hope this maybe helps or sorry for rambling as I type very, very fast.

Beach

MMI 20 months (varying dosages, drug induced hypothyroid 2 times)
RAI May 2012
Moderate TED – no steroids prior to RAI per thyroid eye doctor
Normal FT3 and FT4 ranges and very low out of range TSH 11 week post RAI blood work
Not an MD or medical practitioner

[beach45]

in reply to: Hypo Might Raise TED Risk? #1173894

Hi, this site may help with partial response to your questions from ATA which I believe is okay to supply this link: http://www.thyroid.org/faq-radioactive-iodine

I had spoken to a woman who had RAI 7 years ago and she said that the nuclear doctor and tech wore like space looking protective suits, brought the pill in a suitcase, and it was very contained. Then they ran. There are still precautions yet my nuclear doctor and tech wore regular doctors clothing and they claim that anything under a certain amount of millicuries (mCi) are not as strict guidelines as prior as my friend’s dosage 7 years ago was 10 millicuries. Yet it was still in a sealed container and after I swallowed it I had to leave the building immediately to go straight home and not to be in close contact with anyone. They gave me a sheet a couple days before with guidelines as I had another RAI-Uptake and scan prior to the I-131, so I was prepared. That part was painless for me and the pill was regular size unlike what my friend took back 7 years ago. I personally though always heard of it being taken at a hospital in the nuclear department yet only my experiences in this area I live in. Best of luck!

[beach45]

in reply to: Hypo Might Raise TED Risk? #1173889

Also my thyroid eye doctor said people who do develop severe TED after RAI with having moderate TED like myself prior, the percentages are very low.
That I am worrying needlessly and to just get regular check-ups every 6 months now 3-5 years post RAI when antibodies are most active. So I said no worries; he said never say never as of course he said anything is possible. Nice. I unfortunately know of people who did get TED post RAI who did not know they are inclined to. I think there is all kinds of information out there based on personal experiences though re: TED and RAI here and on other forums. For me post RAI so far so good and I’ll see where this journey takes me!…beach

[beach45]

in reply to: Hypo Might Raise TED Risk? #1173888

I know what you are saying Gatorgirly. I’m careful only because on some other forums people talk like certain things are gospel and I think all of this Graves and TED experience is also based on personal experience and there are studies done out there and also on what each individual’s endocrinologist / doctor feels about how to go about this or their experiences with Graves or TED. I have been to four endocrinologists, one internist, ENT surgeon who would have done a TT for me, and a Integrative doctor (who is also a regular MD),and they all had somewhat differing opinions on Graves and/or TED treatment based on their experiences in their practices and what they learned through the years. Similar as there are standards yet different. Also the thyroid eye doctor who prior was an internist and he has a wealth of knowledge as I was kind of surprised yet he specializes in TED also so should know! Anyway, I always now back myself up with medical journals or what the AACE or ATA says because dealing with so many doctors myself, I find this works with them. So why I always also like what you are saying, I tell by experience and even if the research shows xyz, we can each experience what goes on our journeys differently. I have discussed this to the max with these doctors as when they see me coming they hide I have so many questions yet this is the only way I learn having an autoimmune disease which has affected my eyes also. Another practitioner said to me, your doctors don’t offer to you what can possibly happen post RAI or what you need to do like the hard candy thing or what happens as far as when you get signs of hypothyroid(?); no I say, I found out for myself either asking tons of questions or researching sites based on other’s experiences. In all my doctor visit experiences with this disease, sadly, no one prepped me very well and I’m still asking questions. Well in my mother’s day it was just a “trust me” thing with the doctor and just that things should be fine and go on your way and deal with whatever after! I kind of like to know why to be prepared and forums like this one is very beneficial to me and people like gatorgirly and so many others I too have learned a lot from and I keep learning! I too like to cover myself also as I’m not an MD. Only my experiences….beach

[beach45]

in reply to: Hypo Might Raise TED Risk? #1173886

From my experiences talking with my doctors, also, if thinking of Graves being there post treatment, my thyroid eye doctor explained to me last week that at least 3-5 years post RAI those antibodies are active. Why even though he said that post RAI that hypothyroid should not considerably worsen TED yet he has specifically said in past that thyroid levels need to be as balanced best as possible for the patient. So I hear from these doctors well antibodies are still there post RAI or TT yet a hypothroid condition is most of the time created post treatment yet we become eurothyroid when we go on the right amount of thyroid hormone; which in working with a good doctor we are then neither hyperthyroid or hypothyroid as long as our thyroid levels are kept in the right lab value ranges. Hopefully this makes some sense!…beach

[beach45]

in reply to: Hypo Might Raise TED Risk? #1173884

Hello,

I am post RAI 15 weeks. Not hypothyroid yet; FT3 and FT4 dropping into range back at 11 weeks; I am sure more changes as feeling hypothyroid now at 15 week blood work.

Have moderate TED diagnosed prior to RAI; no steriods for me as per a thyroid eye doctor specialist who said go for the RAI.

Thyroid eye doctor told me last week generally going hypothyroid will not cause worsening of TED. His physician assistant said most hypothyroid people are not affected with much worsening of TED yet anything is possible. A thyroid specialist I consulted with said for TED just make sure I watch levels carefully post RAI and to avoid a hypothyroid condition. Right now I am tested post RAI every 4 weeks.

I have two friends; one had RAI 20 years ago; another 30 years ago. No cancers.

They had small doses like me; I had 15 millicuries.

The ablation done by either taking a pill or liquid (the I-131) I had done in my hospital given to me by a nuclear doctor who did this as per the order given to him by my endocrinologist. Don’t know why the endo is doing the ablation yet sounds like your doctor’s choice to do it that way(?).

I could not get into remisson 20 months up and down on Methimazole; either too hyper or too hypo even with minimal doses up and down; yet I see from my records I was subclinical hyperthyroid for years and no doctor further tested antibodies.

I was concerned as I felt I had a stubborn case and at a couple months post RAI my endocrinologist(s) were concerned that I was not going toward where I needed to be post RAI. I was very surprised at my 11 week blood test numbers had changed drastically. So no more rounds of RAI for me; my endocrinologist said he would have given it 6 months. I know of two people it took one year to go hypothyroid post RAI; some actually go eurothyroid yet my endocrinologist said not often. I had pretty high antibodies too.

I have two cats. With the 15 millicuries I was told stay away from husband and cats two whole days. I did 2-1/2 daysjust for me thinking I’d be safer. My cat’s vet said stay away from my cats, except short period of times, total of six days. So I definitely shut the bedroom and kept them away from me as they sleep right by me. I probably did a little extra isolating than some people may be advised.

Yes I can relate and you have gone through even more years than I. It is now total about 27 months for me. It has been a nightmare yet I think the light at the end of this tunnel is getting there for me hopefully. Why some have an easier time on this journey than some I do not know. I know people who had absolutely no issues post RAI and no weight issues, for instance, yet I’m struggling with the weight issues and starting on that drug Methimazole/Tapazole.

I wish you the best in your continuing journey; I would say though overall now post RAI things are going well for me with just the above mentioned issue and maybe a couple minor things. Good luck!….beach45

[beach45]

in reply to: ~New Here~ RAI questions…. #1173824

Jeannet,

Your welcome and thank you also; it sounds like you have everything under control with your medications and working with your doctor.

I did not have any salivary or neck soreness issues either.

I was offered propranolol by another endocrinologist on an as needed basis not every day. Turns out I did not.

There is hope and I am as calm as anything now and pulse is in the low 70s, high 60s and sometimes lower. I’ve never, ever in my lifetime had a pulse so low except off and on when on antithyroid Methimazole yet that was that medication forcing it down; once off of it, heart rate went higher. So the issues I had like what you are having now, have subsided for me in almost four months now and for some sooner and some later. My endocrinologist told me up front that if the RAI worked, I should be hypothyroid by six months post RAI. Which so far it has.

There is a light at the end of this tunnel; I take it one day at a time as I still do not know where the future will bring me, yet things have improved thus far. Only issue I have is the weight and part of that was being drug induced hypothyroid 3 months on Methimazole back Winter 2011; I have some gain now post RAI yet I know of people who also had success keeping that down once they got on the right amount of T4; I have basically had a very good diet and exercise plan most of my life and even after years of smoking, never gained one pound until this interesting Graves treatment episode. Plus I am in my 50s and there too are many who get this disease at a much younger age. Being close to the change of life I am sure has something to do with things. Yet to me, being healthy in the sense of not having to fear for my heart going into a storm or consistently high heart rate which I had even a long time before my diagnosis, is much worse. I corresponded with two younger people who had RAI in the past year; on Synthroid, no weight gain and moving ahead not even thinking of it anymore!

Best of luck and look forward to hearing how you are doing in time if you want to share….beach

[beach45]

in reply to: ~New Here~ RAI questions…. #1173821

Hello Jeannet,

I had 15 mCi like you beginning of May 2012.

My nuclear doctor told me isolation for two days.

I do not have children; a husband and two cats. It was my vet who told me to keep my distance from the cats for six days yet after the two day total isolation period I could have them in the room with me and short periods of time next to me.

I had terrible itching with Graves symptoms off and on and a bit after RAI yet more my back and stomach areas. It all subsided in a few days for me.

I had more hyperactive feelings post RAI for about a month. I told my endocrinologist and I have a pulse oximeter here and resting heart rate was going over 100 bpm yet nothing like it was when my Graves was in full swing which was 120-140 bpm resting. My endocrinologist and my internist both told me keep an eye out if my resting heart rate was consistently over 100 bpm, then he would prescribe a beta blocker. I did not need it; I also have normal to lower blood pressure normally.

I found out prior to RAI I have moderate TED in both eyes; no steroid though as my thyroid eye doctor said it was not necessary for me. I am being monitored by my thryoid eye doctor and moving forward after two visits with my thyroid eye doctor within my now 14 weeks post RAI, my eyes are have no changes in measurements and I will be checked every six months for three to five years post RAI. My thyroid eye doctor who knows a lot about this Graves business told me that the antibodies will be active post RAI for some time.

It will get better; things have really changed for me. Yet at 14 weeks not hypothyroid yet and I’m hoping this coming up blood work I am so I can get on Synthroid. Hopefully others will comment as we all have had different experiences.

Best of luck with all this….beach

[beach45]

in reply to: Synthroid Dosage – After Radioactive Iodine Albation #1173780

Your welcome TedyLeo! I am glad to hear you had success at four months and got on Synthroid. I have heard that some on Synthroid do need more to feel better yet mostly keeping the TSH 1 although guidelines suggest 0.3-3.0. I think best what doctor and patient can work out together with thyroid levels and Snythroid dosing where the patient has the best quality of life yet I am not an MD.

My endocrinologist told me maybe a 10 pound weight gain. Why some people struggle with more and some do not I do not know as is it the amount of Thyroid hormone (Snythroid), adding T3 or just some people are not as fortunate and the weight hangs around; that is too with diligent diet and exercise. I just know I am very uncomfortable and on a healthy diet and exercise plan yet hoping maybe with some T4, that I will get there slowly back to a more normal weight for me.

Thanks for sharing and best of luck in your journey!…beach

[Author]

Posts