[beach45]

in reply to: First Normal Labs Since RAI #1174247

Gatorgirly, now I remember as I’ve been forgetting of late you shared in past that you moved from FL to MA. I hope that all works out well for you moving forward with the doctors you have up there.

Sorry to hear you fractured your tailbone and hope you have a speedy recovery! Good luck on the upcoming surgery too!

I also like what Bobbi says about needing to be at controlled normal levels for months to start feeling right; I know my current endo said it can take a year. I’ve been so up and down first on antithyroid drugs and now post RAI with 3 weeks on Synthroid I do not know what normal may feel like!

Yet always good if we can find a doctor we work well with who listens.

Best of luck with everything!….beach

[beach45]

in reply to: First Normal Labs Since RAI #1174241

Gatorgirly, I hear your dilemma.

I have gone through similar 28 months since start of Graves; almost 2 years on Methimazole and then now 4-1/2 months post RAI; not feeling normal.

I do know that my current endocrinologist told me as I ask a million questions, that once my levels are “balanced” post RAI which I had first week of May 2012, that I will move on to my internist to test me for future; I had been tested while on Methimazole and then post RAI every month (since November 2011) and as I just started Synthroid 3-4 weeks ago and I have been not been feeling well thus far;

Yet, once I am “balanced” which my endocrinologist said can take approximately 6 months to 1 year post RAI, I will not get tested as frequently; in fact he does treat patients every 2 months normally post RAI until the become balanced; then the time in between becomes greater yet I do not know if it would be every 3 months or every 6 months; I know someone post RAI for a few years who just got tested once balanced once a year.

I would think though if you request something and insurance covers it, there should be no problem with your request; I mean I know people who ask for specific blood tests or more frequent blood tests and get what they need; yet not everyone; depends on the doctor and situation.

It sounds like your former endocrinologist would be better to work with. I had an endocrinologist I loved and she left after 6 months working with her back in 2011 to go to another state and I believe if she had still been working with me, I’d not be in the boat I am in right now!

When I listen to what you say and about the surgery and being in range yet still not feeling well, I hear many others stories similar yet not just on this forum. I too got lab results too late after going seriously hypothyroid a few weeks post RAI and it was treated as being oh so casual like I should not be concerned.

I do believe in time we can feel “normal” if we are working with the right doctor; we definitely have to have a comfortable patient/doctor relationship; I am finding some people have a much easier time than others post RAI as in my case with thus far some difficulties and I am only getting there slowly from my own research and being my own health care advocate and stressing things to my doctor(s). It has not been easy; I am sorry you are going through this. Plus I am hearing for some even when balanced it does take a while to feel normal so I am still not sure about all this either and I am told post RAI to give it at least a year to see if I start feeling “normal” even with levels that are supposedly in range.

For me, if I could not get the current doctor to work with me with your concerns you mention, it’s your health, your life… it may not be a bad idea to consult with or move on to a new endo?… best of luck with all this…beach

[beach45]

in reply to: Updated Diagnostic Criteria for Thyroid Storm #1174220

Darcy,

Your welcome…I wonder the same thing if I could have been diagnosed earlier and maybe had less problems; I was definitely subclinical hyperthyroid in 2007 as my T4 was okay yet my TSH was just about non-existent which they then called me “slightly hyperthyroid” yet with no further testing! Yes it is good you got treatment and myself even though for me I have been having a rough time yet a lot of people do well with treatment and I know in time I will get there!

[beach45]

in reply to: UPPER EYELID SURGERY TODAY #1174178

Best of luck to you today Shirley!

[beach45]

in reply to: Possible to be Hyperthyroid 6 months post-RAI? #1174168

Hello,

Well definitely I am not a doctor yet I can only go by what my current endocrinologist told me now post RAI 4 months.

I started at what I think a very low dosage of 75 mcg of Synthroid; he is very conservative as he is very concerned of me developing a afib situation starting me out too high for me being in my early 50s yet I have no heart issues (thank God) and no history of it in my immediate family.

I know of doctor on the other hand who start patients at a higher dosage as I know people who had less millicuries of the (I-131) than I and weigh much less than me who started post RAI at 125 mcg and 150 mcg. Some doctors work down.

What I was told by my endocrinologist’s nurse that it can take really a whole 3 months before changes are felt; endo told me 2 months. Although you are further along. There must be some explanation as from what Bobbi has also shared here.

Also my endocrinologist said do not expect to be stable for almost a year on the right amount of Synthroid; he also said true some get stabilized sooner than others. He is breaking me into this oh so slowly with my extreme sensitivities to medications, supplements, herbs, treatments, surgeries and testing me once a month instead of every 2 months like most of his patients.

Plus like Bobbi said how much I-131 the person receives; I had 15 millicuries; I find some with less had an easier time than I have getting dosage right quickly; then I know some who had 29 millicuries to make sure it gets destroyed; like another endo I know just wants it killed and try to get patients on the right amount of Synthroid right away if possible. I find these endocrinologists are all doing something different. My endo told me I’d probably end up with 125 mcg of Synthroid eventually; yet I read somewhere which it is not an “approved” source that a lot of post RAI people end up on 150 mcg – 200 mcg of Synthroid which I know two people by me who actually had in time. Yet again we are all so different some stories I read of it as an up and down thing for some people the first year.

Well I only share by what my endocrinologist(s) said as I ask tons of questions of them.

It sounds like you are on the right path though and working with a good doctor you will get to where you need very soon! Best of luck to you!….beach

[beach45]

in reply to: Confused – Post RAI on Synthroid Normal Experiences? #1174096

MVK, that is great at least you are now on a better dosage and you’ll probably feel much better in a few weeks! You sound like you have a very good doctor there working with you. It seems like for some there may be some up and down in the beginning as my endocrinologist told me; yet he wants me to sit tight for the blood work each month and not go by symptoms. So if I called him with my current hypo symptoms he’d tell me wait until it is time for my next blood work. Good you have a doctor who goes by both lab values and symptoms; I may soon be in the market for finding a doctor who goes by both which is tough around here!

Great news; thanks for sharing!…beach

[beach45]

in reply to: Dependent on Hormone Pills #1174129

Hello VanlsleGal,

I have been following this thread and wow a lot of information.

I hear what you are saying; I researched in detail as many medical journals as I could and talking with many different doctors about my options for my Graves which symptoms started back in May 2010; being on ATD, Methimazole, for 20 months bought me some time to research yet I personally was miserable on them and no doctor (4 endos) seemed to be able to get me regulated; so I opted for RAI.

I was also very fearful and anxious and had many of the same concerns as you as I have two cats and a husband; I did not travel afterwards yet I know a young lady who did and all worked out fine; in fact she was one of those who did very well post RAI and just went on Synthroid a few months ago and no problems!

I too have spoken to many who had RAI success, hear of some here on GDATF and many who probably do not post anymore because there is no need anymore for them to be on such forums as they have gotten on with their lives. Two people who I know personally who had it many years ago and no cancers, no other health problems, take their Synthroid and do not even think about it. Actually thought I was obsessing and overanalyzing over it too much!

If I had been able to maintain my thyroid levels on a very small dosage of Methimazole, ATD, I would never have taken RAI; I am against medications and treatments of such yet my hyperactivity due to Graves was really beyond control and I had no choice unless I wanted to gravely affect my heart and bones in time;I chose to stay on ATDs as long as I could; I know of two people who had heart attacks due to not knowing they had Graves and it was found out later; yet of course not to scare as if a person like yourself is being treated and monitored by their physician, this should not be of concern.

I see it as a mixed bag; and yes my current endocrinologist admitted I am trading one problem for another; yes some had no problems post RAI as I listen to here; I have been one of those as up to now have had a very difficult journey and now struggling with thyroid hormone (Synthroid) 4 months post RAI which may not be enough for me right now and the weight gain is terrible and the bad mood swings. I know of some no problems. We are all individuals and have had different degrees of Graves to start, different ages (I am 53), how long was the person undiagnosed prior, possibly how many millicuries you take as I had 15 mCi and know some with much less who did much better than I, and even some who had more did better than I so far. Yes you are correct about myexdema coma as I know someone who started going that way and they were being monitored by a good physician; My endocrinologist and I just spoke of that my last visit; I had a horrible time two weeks ago and went to the ER 15 weeks post RAI and I told my physician to do a blood test earlier and yet he refused. Yet statistics I read show that condition does not occur very often yet people have had more issues with thyroid storm and sometimes people who did not know they had Graves (I know of 2 people) who had a storm and it took doctors over a week to figure out it was Graves disease!

My opinion only, you have to do what is best for you; like I said I had many of the same concerns you have now and I was basically backed up against a wall and I feel in my area I do not have the best of medical care as to me 1/2 the battle is also working with a very good physician; of course with whatever treatment we have to watch diet and exercise which myself I have done this diligently for over 28 months now. I did search out for a “natural” remedy and there was none and one endocrinologist said there is nothing out there that actually stops the antibodies from attacking the thyroid or else then they would not have to take out or kill the thyroid to start.

I do know of some people who had TT and did very well and happy they chose that. I am wondering if I made a mistake myself not taking that route. Yet I had a very bad time after another surgery back in 2009. Some have already done very well with TT, back working and moved on. Same with RAI.

So if you can stay on long term drug therapy, from my own experiences if that had been an option for me, I would have done that; yet mine was pretty far gone and I basically wasted 20 months on Methimazole as there was no signs of maintaining or remission for me; there are people out there on it for years or doctors willing to work with them on that; hopefully you have that good physician to work with.

I looked at this with the radioactive iodine thing, that life is full of risks and weighed the pros and cons which were in relation to my experiences; not anyone else; just mine. I had a husband drop dead eight years ago at 56; I have no guarantees of perfection in my life yet I can live my life to the fullest and not in fear, and I also feel in time with the right medical practioner this too shall pass and things will get better; maybe different yet better.

For me I could not stay hyperthyroid as they told me it very well could start taking it’s toll on my heart. That is just my experience though. You as all of us has to do what is best for you!

Best of luck with your journey!….beach

[beach45]

in reply to: MY TERRIBLE TIME WITH TED-a review #1174099

Shirley, wow what a story! Thank you for sharing this and I am sorry you have had to go through this up through now.

I was told I have moderate TED and my thyroid eye doctor said regular 6 month check-ups for it the next 3-5 years.

I hope that your doctor(s) will now get you to the point where you need to be.

I hope and pray we will hear some good news from you soon after they perform the surgery and very good luck with this!….beach

[beach45]

in reply to: Confused – Post RAI on Synthroid Normal Experiences? #1174094

Just an interesting comment I found on another site, medhelp.org that Dr. Lupo, MD and thyroid specialist said: “Sythroid starting dose for this situation (in response to a patient post RAI), could be 0.7 mcg/pound (assuming roughly normal weight for height) …unless you are 65 years of age or have heart disease. For a young, healthy patient, a full replacement dose can be used from the beginning.” Yet this is just his method as again of what he follows for his patients as we know one size does not fit all and from my experience on this journey, none of my currrent or past endocrinologists are following one standard; so just an FYI; nothing written in stone yet going by this then I’m very underdosed and I do not have history of or have heart disease…..beach

[beach45]

in reply to: Confused – Post RAI on Synthroid Normal Experiences? #1174093

MVK, P.S. I meant to say also good luck Tuesday and I hope that your doctor will get you on the right dosage soon for you to feel much better; I’m finding out it is a process and like with my endocrinologist doesn’t want to put me up too high a dosage of Synthroid to make sure I don’t start having palps / racing heart! We’ll get there..in time; I was told months to a year…..beach

[beach45]

in reply to: Confused – Post RAI on Synthroid Normal Experiences? #1174092

Hi MVK, Thanks for sharing; I know we are on the same schedule having RAI around the same time. It certainly has been a journey thus far and mine strung out too with all those months on Methimazole up and down (gaining like crazy!) and then prior with at least 3 years where I was not diagnosed with Graves and knew something was wrong; why further testing sometimes even of antibodies is important; many who are caught earlier fare better or some just do fare better in general even with the weight thing and others not for some reason be it severity, how long this disease was there underlying, amount of I-131, age; etc., etc. I hear all different stories and not one size fits all. I listen to people who had RAI and not a big deal; hardly gained if anything, got on Synthroid, no problems for years. Others not. I do not understand my endocrinologist who says, oh you could gain more on the Synthroid yet in time when we find your right dosage it should get easier! I know we can diet and exercise until blue in the face; or like my husbands cousin the doctor who had the RAI 20 years ago said it is “not just about diet and exercise!”..defending me to someone else who said weight watchers. It is about working with a good doctor getting the person to where they need to be with their metabolism working efficiently, plus of course the diet and exercise as yes I know all about the metabolism changing going from hyper to hypo and altering diet and the whole nine yards as I’ve researched this thing to death over 2 years. So I hear you about those things keeping sanity! My one doctor said if I can take natural diuretics like green tea, grapes, asparagus and other foods which can help with some of the bloat/water retention that comes with hypo. I’m told by many it does get better; yet for some I know years post RAI or TT it has not! Want to be more optimistic though as I’ve had the entire time yet I am losing faith with doctors too. We’ll do fine; it will be nice to keep up with how we are doing here and seeing improvements! Happy you responded and always happy to hear other’s journey’s! Thanks and you have a great weekend also!

[beach45]

in reply to: Confused – Post RAI on Synthroid Normal Experiences? #1174090

Wow! A lot of really good comments;

Alexis again thank you and please keep me posted

Gatorgirly, I hear you. It sounds like we are doing similar except I no longer drink alcohol. Yes real foods and then I even go organic too! And even less carbs, fats, etc.

This is what I heard also; once I become eurothyroid, things will get better; weight is the last to go!

I hate to say I felt better hyper too. Yet that rapid heart rate was not good for me I know; I was not diagnosed properly as I look back for years so I had issues a very long time. So many tell me well when you are on the right amount of thyroid hormone for you and you give your body a chance to recover, things will get better.

You were active like me. I rollerbladed, walking, did aerobics, swimming, tennis, golfed, weight lifting, many activities up until 51 when the doctors said stop, you will have a heart attack with the Graves and stop exercising. I wondered why my heart was racing unusually fast after regular exercise that I had done for many years.

Right now both my body and mind has turned to mush. I’m glad I graduated from college right before this started over 2 years ago! LOL!

I hear you about the self esteem issue although the exterior issue with me went out the window as I emphasize to my doctor the potentials for high blood pressure, high cholesterol, sugar problems and I had a very bad case of phlebitis in my teens the only other time I gained a lot of weight yet that was from my own fault of long periods of overeating and I had since from back then at 17 to 51 maintained a very good weight with a regular diet and exercise plan. So I’ve emphasized health to my doctor as I know he doesn’t care that I went from a size 6 to a size 12!

I wish you luck with this and thanks for your input. I look forward to hearing your progress as I listen to your other posts too and thanks for sharing.

Shirley, you give excellent advice here. I know one week, well 1-1/2 weeks is too early to tell much; I just feel like I’m pregnant and I never had children and it has gotten very uncomfortable.

Yes my endo and nurse are being level headed. I am not probably because my mind is all over the place and I’m very uncomfortable and frustrated. 20 months of frustration on Methimazole and now this.

I think I was looking for a magical ride and it’s not there.

As some people I know had an easier time…

You are right my endo is taking me into consideration as doesn’t want my heart rate to go all over the place and knowing my sensitivites to medications.

I hated the fast heart rate yet I was sure a lot sharper hyper; yet this may be a transitional period too as I’ve never been really regulated even when I was on Methimazole. I do not remember normal.

Yes I read about the facilitators and the weight business. That has helped me also to read their stories and others experiences on the archives here.

Have not hit menopause yet at 53; family goes late like 55; yet major changes since RAI in May as it disappeared. Never in my entire life. Internist thinks all hormones were really stirred up. With my track record of how out of whack my body gets even with simple procedures in past, I am not surprised!

Endocrinologist specifically told me he goes by lab values only not symptoms. There is another endocrinologist I know who goes by both lab values and symptoms. I did not switch because I’ve been with the current one since Nov 2011 and he saw me through the RAI and is checking me monthly due to my sensitivies and issues; he never saw anyone respond so rapidly to minor changes in Methimazole and we could not get me regulated at all so why the RAI. He wasn’t pushing it either; I could have opted for TT yet I had a bad time with another surgery back 2009 so I decided on RAI.

It is interesting you say that. My husband has a cousin who is an anesthesiologist who had RAI 20 years ago, doing fabulous, on T4 only, weight perfect, a few years older than I as had RAI at 40 and says people she puts under all are on T4 if they have hypo whether from RAI or TT or naturally. Interesting. I have been cautioned about the T3 thing. I hear you.

That is so very true that as we age the weight thing becomes an issue anyway even if we never had a thyroid issue.

I really appreciate your response and all the responses here. Gets me thinking and just keep having patience that this too will pass and working with good doctors I’ll hopefully get to at least near where I need to be. Maybe different yet better!

Beach

[beach45]

in reply to: Confused – Post RAI on Synthroid Normal Experiences? #1174088

Hello!

Thank your for your response/input.

I’m not sure yet about Armour or Nature Thyroid as it may be difficult for me to even get this. I definitely know of one doctor here who gives T3 (not sure if just Cytomel or Armour and Nature Thyroid too) and she told me that for those patients their endocrinologists in this area drop them then as they are very against the T3.

The weight thing surprised me starting out with being on Methimazole and yes I thought about the menopause issue as I knew prior to this whole thing I was very low in progesterone. My doctors feel my female hormones are all over the place too with this thyroid imbalance and give it time; plus also hopefully no sugar problems as there is some diabetes in my family and will be watching this; my endocrinologist said with post RAI will need to be more careful about sugar as some of his patients developed a diabetic condition.

I think my endocrinologist started me out slow as he is very conservative especially with over 50s and with the heart rate issues not to cause palps starting at too high a dosage.

I believe my internist would work with me if I really wanted to try Armour in future and I know an Integrative doctor who is a regular MD also who would work with me (yet I’d have to get agreement with my internist also; yet for now I want to give the Synthroid a try first.

Yes I thought about Cytomel too yet not sure about that either.

If I went to another thyroid medication other than Synthroid, it would probably be later in this year or beginning of next year. Only time will tell. I will keep you posted; I’d love to hear also if you switch and how you do!

beach

[beach45]

in reply to: What would you do? #1174075

Your welcome; Yes, sounds like your call and you have a good doctor there. I’m very sensitive myself to medicines, treatment, supplements, herbs, etc.; my doctors all learn that about me with time. I had palps off and on my entire life yet much worse with Graves and I understand not wanting to go there. Yet my neighbor here is hypothyroid years and had palps on Synthroid, is also a nurse and just told her doctor reduce my dosage as he wanted to send her to a cardiologist and it turned out all it was a reduction in the Synthroid dosage as she knew. In time, whatever you decide you will find your niche as so many others do working together with a good doctor. Good luck with that!

[beach45]

in reply to: What would you do? #1174073

Hello,

My Synthroid drug insert says notify the physician if you experience headaches and etc., a long list as you have done that. I called my pharmacist about one of the symptoms they listed of heat intolerance and he told me it can happen in the beginning and not to worry just yet as I am on the medication now only 1-1/2 weeks.

I heard from just my own research that it possibly takes a little while to transition from the Synthroid to Armour or Naturethyroid and with careful dosing changes from your physician; I’ve spoken to a couple of people who transitioned and they did fine; your are fortunate you endocrinologist gives this option of natural thyroid hormone as two of mine where I live said absolutely not and not even any T3. My internist who will eventually take over my post RAI care said possibly yet he is not thrilled with the naturals either. I wonder if it has to do with dosing properly and the more frequent testing needed. Plus I already know about the fact if not done properly the potential for recreating a hyperthyroid condition, etc., which here and on other forums people talk about T3. Your endo should know best though.

Personally I feel a person has to do what is right for them working with a very good doctor which it sounds that you have that; I know of people on the natural thyroid hormone doing very well; I know of people on T4 forever and doing well; I believe whatever it takes to have a good quality of life on this post treatment journey. Good luck with all that!

beach

Diagnosed with Graves August 2010
20 Months Methimazole no Remission
RAI early May 2012
Synthroid 75 mcg August 20, 2012
Based on opinion personal research only

[Author]

Posts