[beach45]

in reply to: Synthroid Dosage – After Radioactive Iodine Albation #1173776

Hello,

Like Alexis said I know that they keep TSH suppressed for the cancer patients.

I do know from my own endocrinologist who am I told is one of the best in the state I live for treating thyroid problems and also a professor at a Medical University and I would imagine is up on the latest medical information, that for myself, being over 50, that TSH is best between 2-3. Yet I have spoken to another endocrinologist, a thyroid specialist online and a couple of other medical professionals (MDs also) and they say regardless of my age TSH should be at least 1. The reason why my endocrinologist says TSH between 2-3 is due to preventing heart problems such as afib and bone loss, especially in the case of women who may have or are going through (like myself) menopause. He got upset when I said my internist suggested keeping my TSH at 1! Do I feel best TSH 2-3. From my past records not at all and I am talking way before Graves issues started. My best was TSH under 2 and I have lab reports from the past showing this. I keep all my lab records and a chart of where my TSH and FT3 and FT4 has been since Graves treatment. I suspect your TSH is low as you mentioned TSH high yet I think you meant the opposite. Yes I also heard that for some Graves patients that more Synthroid is needed yet not all in my discussions with patients post RAI. I have a friend who had RAI 7 years ago and constant changes of Synthroid year after year and even on a very high dosage, still is what you could consider hypothyroid by what AACE suggests as her TSH is over 3.0.
Truthfully, I am getting all kinds of different information and now 14 weeks post RAI I am still not on Synthroid and I am gaining more weight and believe I may be getting close yet I am concerned there is no real consistency and see studies now that lower TSH does not necessarily mean heart or bone issues yet I also need to listen to my doctor as he is the MD not I! Yet I also want to have a good quality of life and feel my best. I’m not there yet though.
And hopefully I will feel better once on Synthroid and per doctor recommendation what I consider t0o high a TSH because for 26 months since this started (and on MMI 20 months of that time) I have not felt well and just keep gaining weight!
Good luck with all this!

Beach

Methimazole 20 months no remission
RAI May 3, 2012 (waiting to get on T4)
Not an MD just opinions formed from reading medical journal articles and speaking to many physicians, endocrinologists included.

[beach45]

in reply to: Post RAI 8 yrs on Synthroid #1173734

Hello and welcome here!

Only from my experience with Graves and treatment and post treatment listening to others too, that we need to find our own niche working with our doctors. There are many who do very well on Synthroid alone for years post RAI and TT and like in your situation it does not seem to be working very well at all. It is very good you are working with doctors on this issue and I agree too with Kimberly that the doctors should be on the same page to best benefit your good quality of health.

For myself, I have not gone hypothyroid just yet 14 weeks post RAI myself yet starting to have those miserable hypothyroid symptoms. I charted in excel my dosages of antithyroid Methimazole, blood test results and symptoms while on Methimazole 20 months and now also post RAI blood test results and symptoms, and I saw that I was completely miserable with a FT3 in the lower end of what is in range 2.0-4.4. All similar symptoms that you are having.

What I am seeing from my research and listening to others, that it is not a one size fits all here. Even some endocrinologists are saying that there may be a need for T3/T4 combo to help improve patient’s quality of life and there is no set agreement either where TSH should end up; or is TSH testing alone sufficient post RAI or TT when the patient has been so called stabilized on T4 for a while. As far as I read in medical journals and listening to all kinds of doctors, endocrinologists, thyroid eye doctor of mine and other people, nothing is written in stone here and further research is needed.

So with all that said, I did find this article which I believe is okay to post this particular link here on this forum (if not, please Kimberly let me know). For myself, Synthroid alone may work just fine once I hit hypothyroid which I hope is soon as I feel miserable. Yet I know my endocrinologist is concerned about me and wants to catch me before I go too hypothyroid yet he is not one to give “over 50s” T3 due to potential chances of recreating a hyperthyroid condition with possible afib and bone loss over time. Plus I have a bit of a disagreement where TSH should end up as he says 2-3 again for over 50s yet now I’ve consulted with another endocrinologist, a thyroid specialist online and even my thyroid eye doctor recently, and they all say best, regardless of age to keep TSH at 1. So how can we say that one way of addressing what is best for the patient is xyz, if there as what I am seeing, not one set standard being followed. Yes the AACE and ATA have guidelines, yet are they being followed by all endocrinologists and doctors and what about giving the patient a chance with careful monitoring to possibly try T3 or a T3/T4 combo although that is between patient and doctor as I am seeing now this is not a one size fits all type of situation.

As far as diet goes, there is a lot of information out there on other forums and for myself, I am careful what I listen to and make educated decisions on speaking with doctors and my Integrative/Functional doctor and a nurse practitioner who practices both regular and holistic type of medicine. Plus I tell all my doctors what I am doing and that they are all in sync and in agreement together. I never heard of strict guidelines on diets with hypothyroid yet I did hear what Kimberly said in regards to taking replacement hormone spaced out from the other things like calcium, iron, etc…

Best of luck to you with this and it sounds like you are going in the right direction and with your doctor(s) guidance working together of coming to the best treatment option for you….beach

Here is that link: http://jcem.endojournals.org/content/early/2012/05/15/jc.2011-3399.abstract

Opinion and suggestions based on my own researching only as I am not an MD
Methimazole 20 months starting Summer 2010; no remission achieved
RAI May 2012

[beach45]

in reply to: RAI yesterday, how long after did you start to feel better? #1173401

Hello,
I had RAI May 3, 2012. I never had a sore throat post RAI.

I felt hyper for four weeks post RAI; somewhat normal for a few days; week 11 finally showed after showing still hyperthyroid two blood tests prior (weeks 3 and 7) that my Free T3 and Free T4 were in normal range with a very low TSH yet my endocrinologist is not concerned with that. Funny, because around week 11, I started feeling some hypothyroid symptoms and my doctor told me I could start showing hypothyroid symptoms prior to the numbers changing going that way. I’m going into week 14 post RAI now and I am gaining weight with having already carefully watching my diet and exercising diligently every day. I went through a hypothyroid stage when I was drug induced hypothyroid on antithroid drug, Methimazole back in 2011, so I do know the warning signs this time around. I am anxiously hoping that my numbers show this time around that I am now going into a range where I can get on Synthroid yet will not know until two weeks from now when I see my endocrinologist again. Unfortunately, my main issue with all of this has been weight gain despite my diet and exercise efforts, yet I am also in my early 50s and have not gone through the change of life yet, although testing shows that things are changing in that respect. The weight issue though is not that big of an issue for everyone because I am finding we are all so very different in this journey.
So, except for the one issue I mention above, since about week 5 post RAI I haven’t even felt hyperthyroid, thank goodness.

I do know two endocrinologists, my current and another I consulted with that by six months for the amount of I-131 (15 millicuries) I had that I should be on Synthroid by then; I do know too in talking to people I know here and online that everyone is different and some get on Synthroid sooner than later post RAI; my endocrinologist said he has two patients who are eurothyroid post RAI now and never changed yet that is not the normal.

I wish you best of luck on your journey…..beach

[beach45]

in reply to: graves with weight gain #1173388

For me this disease has not been easy in regards to weight; I lost 10 lbs suddenly in Spring 2010; I started eating a bit more since I realized my metabolism was speeded up (at the time I had no clue it was Graves) and I gained 10 lbs. Then in August 2010 after questioning my internist what was going on as I never had it so easy to lose weight, I was confirmed with Graves; I wish I had watched my diet when I had initially lost because from then on, going on Antithyroid drug Methimazole for 20 months I gained almost 20 lbs more.

Like Darcy said the doctor(s) both my internist and endo said Methimazole had nothing to do with the weight gain; diet and exercise; NOT because I was exercising and eating like a bird and all the right foods; very little carbs if any. So part of that was being left drug induced hypothyroid on Methimazole too long and then even when I flipped flopped back to going toward hyperthyroid for a while with a reduction in medication, I never lost the weight gained.

Plus I had issues prior to Graves where I gained weight as I showed hypothyroid from my blood test results and all of a sudden took a 360 turn and went hyperthyroid. I had all the antibody tests in August 2010 and it indeed showed Graves.

For me though, the most important thing for my health was to get this disease under control and with Methimazole I could not 20 months later it was too much of a rollercoaster so I opted for RAI. Here I am 3+ months later, in range now, yet not hypothyroid yet and waiting anxiously so I can get on Synthroid because I hope once I finally maintain certain thyroid levels, that hopefully it will be easier to lose weight with diet and exercise; which I am already doing anyway.

Do not get discouraged as this is a difficult disease at times. For me I just want to stabilize in weight so I do not have to go into yet a larger size as with not being able to afford it anymore and plus I know I must be changing toward hypothyroid again as I’m puffing up in the middle again like I was hypo in past. It is important too for our self esteem to want to be a normal weight yet also like for me, to help minimize pain in my back which already has some degenerative disc disease and the arthritis in my knees as more weight, more pain. Plus other health problems that could arise as I am in my early 50s so sometimes with age weight in itself can become an issue.

I patiently wait though that once I get balance for me, that then I will have some weight loss success. Others have had the success too with time and effort yet I find this disease takes a lot of time and patience, at least for me! Some have it easier than others as we all have a different journey and I have heard of others gaining weight with Graves no treatment yet and then those who were on higher doses of Methimazole for a while like myself.

I laugh my endo says, no more than a 10 lb weight gain post RAI; I cannot afford to gain any more! At least now that I’m in normal range in my last post RAI blood work I can exercise a lot again (my heart rate is down) and I am doing so. Before that, only slow walking. I go to therapy and acupuncture (which all my doctors are okay with) to help with my moods to deal with this and I believe there is a light at the end of this tunnel somewhere. There is some good sharing here on this forum on weight issues too from past postings which I have read that helped me. Good luck!…beach
P.S. I do keep a food / exercise journal too so when a doctor says the old diet and exercise wording to me, I have my proof with me.

[beach45]

in reply to: OK now what…RAI Seriously??? #1173291

First, I only go by my own experience and not to persuade anyone into the choice I made;
Second, the thought of RAI was scary for me prior after being on Methimazole almost 2 years; no remission or chance of after time.

I did have two endocrinologists tell me I could have either RAI or surgery.

I did a lot of research and spoke with people who had RAI; I tried not to obsess over it yet it was very difficult and not to get myself too wrapped up in the horror stories of post RAI on the Internet.

I know of so many people who had RAI and that when I said how long I was on Methimazole, they looked at me like why. They looked fine, not overweight, no eye problems and living healthy and productive lives.

My husband’s cousin is an anethesiologist and she had RAI 20 years ago is 60 years of age and looks and feels great. She did not understand why I was on Methimazole and it was not looking good for remission for me or even maintaining levels on a very low dosage as some people can do for years. She said she had it on a Friday, back to work on a Monday and never looked back. She told me once that she puts so many young women under for TT and doesn’t understand from her own RAI experiences why they do not opt for that choice.

I have some other people in my life who had RAI 15, 20 and 30 years ago, look terrific, don’t even think about it, no eye problems. Only one woman who had it 7 years ago and had been in a storm prior, says her energy levels are never the same yet that too is because her doctor is not following her thyroid levels that much as she even recently had TSH over 3 and was feeling lousy. Always good to have a good doctor follow you either post RAI or TT as we know.

It is not a happy thought and I would never persuade anyone either way, RAI or TT because with each there can be a healing time afterwards. One excellent endocrinologist, highly recommended, recently told me that people with having both RAI or TT can months or years later on develop TED. Having TT he said does not make a person exempt. Yes though people told me chances of eye disease worsening after RAI is greater.

I have moderate thyroid eye disease and I still had RAI. My thyroid eye doctor who specializes in the TED, in my case..told me no steroids and go for the RAI. He is monitoring me for the next year; he and his PA told me that they rarely see anyone with major eye problems post RAI.

And maybe you will be fortunate and go into remission on MMI and/or decide on an alternative.

Third, I am the last person who is into health and natural means to have every even thought of taking RAI. For some reason I did not want TT and I had two excellent surgeons here who could have done it for me. I had some eye irritation pre-RAI and have some in my right eye more post RAI yet drops help and sunglasses and I can deal with it. I don’t know though what is out there only being 3 months post RAI in the future so it is too early to tell. I just know of those people who had it years ago who did really well and even the lady who had it 7 years ago looks terrific; it is more her energy levels are not that good yet she is not overweight either and takes her Synthroid every day.

Lastly, Best of luck with this and I consulted with four endocrinologists; one who left my area unfortunately and researched, talked with people and made a decision. Yet I was careful not to listen to too much negativity as yes I know some people had problems yet there are so many who never did. It is a mixed bag unfortunately because we have Graves disease and that condition alone has to be treated and for me, I was at the point I had to make some choice….beach (p.s. sorry if there are typos as I type very fast and learning to be a bit more accurate!)

[beach45]

in reply to: Positive attitude #1173238

Jules, thank you for posting this.

Our minds are powerful tools and can help us with healing.

If we think negative all the time; negative outcomes will result.

A therapist I know who deals with patients with autoimmune disease, told me that people with Graves do tend to obsess over their disease.

I too have been up and down for 26 months with Graves and I just at times feel like I had enough. Then I start to look at the positives in my life and it is helpful for me to write down my blessings and read them every single day.

It is not easy especially how we can change with this disease outwardly, like with TED; I too wear my sunglasses all the time (being called movie star) and not just for my TED yet for keeping cataracts from forming. Plus my parents both had them and severe macular degenearation which is hereditary.

I like what you say is to experience life; yes life is for the living. If every waking moment is used up on obsessing over my disease or poor me, I will get so caught up in it I may never heal. Yet it is human nature to complain and I find in our society we want instant gratification and with Graves disease in a lot of cases, we need time and patient. This is what I believe is what has been taught to me through all this. Also that the exterior is not what matters as I was in the best of shape and looked very good up to 51 years of age before I got this disease and I have realized what really matters in life is what is inside!

It is difficult to keep a positive attitude going yet for me I have to keep doing it as practice makes perfect. Even without Graves; we all have moods and up and down swings as that is just life and it is not always because of Graves as I have to remember do not blame every ache, pain or discomfort or new disease I may develop on Graves disease!

I have been to so many doctors and most of them are not very sympathetic yet they are not in the business for that as they already have so many patients. Some are and that is a pleasure if I can work with such types.

I was told do not let what the doctors say rule my mood. Plus the doctor and patient relationship should be working together and not one dictating to the other.

Yes I agree that is well said enjoy every minute that you can; I had a husband drop dead at 56 years of age eight years ago; my life changed forever and it is good now yet different and the dreams I had of getting old with him were destroyed in one instant. Yet that is life and Graves is life too and I am learning in the recent months to accept it and looking at life with the glass half full instead of half empty.

Thanks again for sharing this!

Beach

[beach45]

in reply to: Looking for others input of progress please Post RAI #1173136

Good luck with things gatorgirly!

Thanks for sharing that brrakes. Your RAI seems to have worked quick which is good. I am kind of anxious to go hypothyroid and get on Synthroid by end of next month! Good luck and please keep us posted!…beach

[beach45]

in reply to: Looking for others input of progress please Post RAI #1173133

Hi Gatorgirly, You are right it is better to go hypothyroid. It is interesting because years ago they tried more to just give patients enough of the I-131 to go like you said eurothyroid. Yet then they found that was not working out too well. Like you said probably because the thyroid can regenerate. It is just a matter of time my endocrinologist thinks I will go hypothyroid. Well we hope. Another couple of endocrinologists I know just want to give a lot to totally destroy it like one said why mess around and just get you hypothyroid quick and get you on Snythroid sooner. Well I am happy with how my current endocrinologist handled it thus far.

Yes this is a very good support group because there is a lot of good sharing by fellow Graves patients and the facilitators have very valuable information and input to share. I could not take some of the complaining sites. I guess I’ve gone through my share of issues in life with two times terribly sick where I could have died and other tragedies, that I feel well this is just another journey/challenge in my life that I have to learn how to deal with and whatever is dealt my way as a result of Graves and treatment do the best I can and get the help I need. You know if you are dealt lemons make lemonade. Not easy and it is good to talk things out most definitely yet whining I do not deal with very well. I know I can get the “poor me’s” sometimes too! I don’t like thinking of these non-physician approved treatments as some talk like they are in “the know professionals” and I would like to know when they go their MD license! I consulted with a couple of natural doctors who are also regular MDs (Integrative/Functional) and there is no cure for Graves with natural means. I consulted with 4 endocrinologists and read a lot of very reliable medical literature as I do tend to overanalyze and I decided based on what I learned that I very much enjoy this forum. I’m sorry to hear of your co-worker with Lymes. I know there is MDjunction site that has a lymes group. I know that can be very debilitating as it happened to a friend of mine a few years ago.

Caro,

The controversy: Additional T3 given to a person who is hypothyroid as explained to me by my endocrinologist could possibly cause a rapid heart rate, possible irregular heart beats and bone loss; basically recreating a hyperthyroid type condition.
They key is that it needs to be dosed correctly by the physician for the individual patient. That is between patient and doctor and I know three out of the four endocrinologists I have seen would not give out T3 unless absolutely necessary in specific patient cases.

Most patients do fine with Synthroid (T4) or whatever T4 medication which it converts in the patients body the T4 to T3. There is information here about studies in another post on T4 and T3 if you search online here which Kimberly provided as a very small number of patients may not convert the T4 properly to T3.

Very possibly more will come out on this T3/T4 situation in time because I am sure more research will be done. I read a medical journal from many, many, years ago when for instance, higher dosages of Synthroid were given to hypothyroid patients, yet they found a hyperthyroid condition was being recreated so now doctors are more careful with dosing. As we know in the medical world, things are constantly changing with time and more research.

There is a T3 called Cytomel which I know some people take along with Synthroid and then there is the natural, Armour Thyroid, T3/T4 combo.

Some people swear by these that they lose weight and depression is lifted and it is a miracle drug this T3. I do not have any experience with it and the facilitators here could better answer this than I. What I learned is proceed with caution with this yet again it is between doctor and patient and what the circumstances are and some people are as happy as anything with a little added T3. I just wrote what I know from my own research over 2 years having this disease as I am not a physician.

Beach

[beach45]

in reply to: Side effects from RAI #1173189

Diane,

I did fine with the RAI three months ago. I was somewhat scared after reading a lot of horror stories on the Internet yet it really was a breeze. The pill was not very large and I took it and went directly home. I had 15 milicuries, had to be isolated for two days from my husband, advised to stay isolated from my two cats for 6 days and I do not have any children. The isolation part was okay and it went fast.

I had some intensified hyperthyroid activity afterwards for about four weeks. I did not need to go on a beta blocker, partially because my blood pressure is normal to low and plus my heart rate was not going over 100 bpm as I have a pulse oximeter here I purchased when all this started for me over two years ago. It was nothing like the 120-130 bpm resting heart rate I had prior to treatment for a few weeks. I was on Methimazole, antithyroid drug, for 20 months prior to having RAI as it did not put me into remission and I was up and down like a rollercoaster as I was not regulated very well. Until I found my current endocrinologist after many months and going drug induced hypothyroid pretty badly before seeing him. So my endocrinologist told me since I was on Methimazole for so long, that I would probably not have too extreme of a hyperthyroid experience post RAI; I had a little extra anxiety initially post RAI and I got through and my endocrinologist kept on top of things for me as I get my blood tested post RAI every 3-4 weeks.

I had about three weeks where I felt pretty good and recently I do not feel that great yet my Free T4 and Free T3 are within lab ranges and just my TSH is low yet I’m not concerned over that as per my endocrinologist also. My endocrinologist told me and another endocrinologist I consulted with told me that a patient should be going hypothyroid by three months post RAI. My numbers are going down much more slowly than most at least from the patients that my endocrinologist sees.

I have moderate thryoid eye disease as I had my eyes checked out prior to RAI by an eye doctor, a thyroid eye disease specialist. He said go ahead with the RAI and no need for me to go on steroids. He is now checking me every couple of months. My eyes bothered me a lot when my levels were changing up and down back over 20 months on Methimazole. They improved after RAI yet then this past week more pain in the right eye yet it comes and goes. No major problems though.

I’m having a cross of hyperthyroid and hypothyroid symptoms now. I don’t sleep that well yet the anxiety is gone. My heart rate is in the 70s which I don’t remember in most of my lifetime if my heart rate was ever in the 70s! I had a heart rate in the 60s when drug induced hypothyroid on Methimazole though. I’m starting to put on some weight in the middle even with all my walking and watching my diet. I’m not worried though as I believe once I do go hypothyroid and get on Synthroid, it will be easier to try to regulate my weight. It takes time as I know others who had RAI and the weight issue is tricky yet with effort on the patient’s part and working with a very good endocrinologist or whatever doctor once the patient is hypothyroid, and on Synthroid, that condition can be improved.

I am also in my 50s and not into menopause yet so that is probably not helping with weight issues for myself, plus I gained 15 extra pounds on Methimazole and that is not counting the weight I lost from Graves which would be total of about 28 pounds. I have a couple of friends who were on antithyroid drugs for a short while and never gained any weight on them, and only gained back what they lost when very hyperthyroid after RAI (they are thin and on Synthroid for a few years now). So not everyone has that weight issue and we are all so different with how we respond post RAI. Plus I am now told because I was hyperthyroid for so long and it was not addressed back when I was “subclinical hyperthyroid” it is more difficult for me.

The most important thing, is to be aware of hyperthyroid condition intensifying post RAI so you can contact your doctor right away and to be aware also of hypothyroid symptoms as for some all of a sudden a few weeks post RAI those hypothyroid symptoms start appearing. We don’t want any extremes and like myself, if I had known when I was on a higher dosage of Methimazole back in Winter of 2011 for three months and I went very hypothyroid and was not aware of symptoms, I may not have suffered as much. I was wondering why I was getting so heavy in the middle and so depressed, sluggish, constipated, tired where I would fall asleep in an instant when I sat on the sofa, very dry skin, feeling cold, bad muscle and joint pain, moon looking face, and if you look up hypothyroid symptoms I had them all! Now I know and I should have called the endocrinologist earlier back then. Yet again,in my own experience the doctors I deal with do not give out too much information, unless you ask questions and boy do I ask now!

I spoke with a couple of people who had RAI a few months before me and they did not even think of it afterwards and just one day they went on Synthroid. In fact my husband’s cousin, a doctor, had RAI 20 years ago and was not sure why I was on Methimazole for so long and said to me RAI is not a big deal and she is doing fabulous on her Synthroid one pill a day, for 20 years now! Only one time her medication dosage changed. I found if I try to stay calm through this whole ordeal, it helps me with the healing process and this total process of going from hyperthyroid to hypothryoid.

Bottom line is we are all so very different in this process and some seem to have it easier than others!

Overall, I am glad I did the RAI and with my numbers now going in the right direction three months post RAI, I feel that I am getting closer to what would be normalcy for me. I look back at the fears I had of it and thoughts of potential side effects, and now I wonder why I was so afraid. In fact, I wish I had taken it back in August 2010 when I decided to give antithyroid drugs a try for remission. I might not have had this issue with the weight now that I do yet I cannot go back and only look forward to a brighter future.

Best of luck with your RAI. Please keep us posted….beach

[beach45]

in reply to: Looking for others input of progress please Post RAI #1173130

That is great MVK; congrats on that!

I hope all goes well with the T4 and look forward to hearing your progress.

I’m not there yet as my numbers I mentioned just show like my doctor said today, “in normal range.” He is not worried about TSH as yes it can lag behind as what he confirmed today. He did say to my question to having cross symptoms, hyperthyroid and hypothyroid and he said that is very possible. He told me that I’m very slow in going “hypo” and not very common yet some people actually become eurothyroid. Probably won’t be though in my case. Most of the action post RAI should occur within the first 3 months what he was saying. So it is still a wait and see yet I said I’m worried about going too hypothyroid as I did when drug induced hypothyroid on Methimazole back in 2011. I am starting to get leg cramps again and due to having a very bad case of phlebitis back in 1976, I get concerned if I gain some weight. I was on a very strict diet when I was hypothyroid for those 4 months back when Methimazole induced hypo and it was horrible because I was so bloated and crampy in my legs and joints hurting. So he said we should catch me in enough time with the next blood work in August. He cannot put me on Synthroid with having Free T4 and Free T3 within range and they are at the upper end right now yet will if things chance toward hypo even if TSH is still low. No more thoughts of having more RAI as I’m heading the right way. So little steps at a time. Plus once I get balanced as I’ve been all over the place for two years, it may be much easier with diet and exercise and going on T4 for me to lose some weight. Well only time will tell as I still read in some of my thyroid books that almost a third of patients need some extra T3 yet I’m not going to go there because there may never be the need and that can be risky business. I’m just very happy to be going in the right direction even if I don’t feel totally right just yet.
This forum is a great resource. For 2 years I’ve gone through so many forums and listening to a lot of people. This forum is not whiny and complaining type posts like some of the sites which I won’t mention. Or information that is shared yet to me not backed up properly. To me, this is not an easy journey and even if things are not the normal I knew before, it is a new normal and I have to accept what comes my way as it can be difficult having an auotimmune disease, yet with time and patience it can be controlled. My doctor commented I was hyperthyroid for a very long time, which was so true and not being caught back when even when I was subclinical hyperthyroid so it will take time to get used to the new me yet I will get there and we all will just like so many others have and moved on with their lives!…all the best to all!…beach

[beach45]

in reply to: Looking for others input of progress please Post RAI #1173127

Thank you both for your input.

Gatorgirly, I am sorry you have gone through so much since RAI. It sounds like you have been on some rollercoaster ride with the doctors getting you regulated properly. I know my endocrinologist said give it a year tops that likely I would be regulated and then I get released to my internist. I definitely am not there yet as even with my Free T4 and Free T3 now in range, TSH of .005 which is not budging is not so great; yet I know TSH takes a while. I had been drug induced hypothyroid back in Winter of 2011 on Methimazole and my Free T4 and Free T3 were horribly low yet the TSH was normal 1.1; decreased dosage of Methimazole, TSH was all of a sudden in 3 weeks time on the lower dosage of around 13. So I’m not surprised in these past 3 months it has not budged.

Actually in answer to your question I already asked my endocrinologist last month if my Free T4 and Free T3 come into range and TSH stays out of range, what do we do. He said he will wait and watch for a bit. If the Free T4 and Free T3 did not come into range by 6 months, then another round of RAI or if I opt for TT. I suspect TSH will start to rise at some point!(?)

My current endo and another endo I consulted with told me that if a person does not go hypothyroid by 3 months post RAI, that it becomes a slower process from 3 months to 3 years. The one endo drew me a diagram that the thyroid die-off process is quick the first 3 months and then it evens out and he said that sometimes the die off can become a long drawn out process for that 3 months to 3 years. I have one friend here who had RAI 7 years ago and her Synthroid dosages changed quite frequently over these 7 years. I know of other people who got on a specific dosage of Synthroid after a while post RAI and never changed dosage for years. My current endo gives me 6 months that I should be on Synthroid. So it is a wait and see yet I’m happy my numbers changed significantly regardless that TSH is still very low.

Actually I meet with him tomorrow morning and I have my new questions ready. I probably drive him crazy with all the questions I have each time yet I don’t get much time with him and like to know the process or what the norm is for people post RAI if there is any norm!

Sorry to hear about needing the prednisone and your TED situation and know others who needed to do that and some gained weight yet in time they lost weight once they came off of it a while. I was surprised my thyroid eye doctor did not pre-medicate and post-medicate prepping for RAI due to what he says I have moderate TED. He said the steroid was not necessary for me. Yet yesterday for the first time post RAI my eyes really bothered me as they did in past at times on Methimazole. My right eye especially looks larger at times and well I’ve always had bulgy looking eyes yet they got worse with this moderate TED. I’m being monitored for a year post RAI with this also.
I hope you eyes are doing much better.

I was warned by my endocrinologist do not expect a smooth ride for a while. He said not too many that he has treated have it easy for a bit post RAI.

All the doctors tell me is diet and exercise. Well I do that. At one time on Methimazole I was so hypothyroid and at the time did not know what was going on as this was all new to me back then, I was putting weight on and eating like a bird and exercising a lot even though I felt like a giant blob and just felt like sitting on the sofa and vegetating as I could hardly move with aches and pains and forget my stomach and the bloat. Why now that I am starting to feel the same sensations coming on, I panic and my endocrinologist knows I want to catch this hypo thing before it gets bad. I charted my lab numbers and symptoms for the 20 months on Methimazole and see where I felt better and where I felt not so great. So in a way it is good I experienced that as I know what to expect yet in another way I am getting very tired of all this and wish I had either done RAI immediately back in August 2010 when it was offered to me or now even better still have had TT instead. I find that no two people are alike in this Graves journey even with RAI.

It sounds like you are doing all the right things and in time it will get better, as what I hear. Some people swear by adding a little T3 yet we know there is much controversy with this subject and I know three of the four endocrinolgoists I have gone to are against it.

That same friend who had RAI 7 years ago also is on a low dose of a beta blocker for life due to palps from the whole ordeal. She said it is tough to come off of them as she weaned herself down with doctor approval to 25 mg per day. I have had heat intolerance for years and even when I was thinner too for years and it is more difficult as I live now in SC as I lived in NJ most of my life and we have more warmer/hot days here during the year as you know living in FL. I would never have moved here if I knew 9 years ago Graves was on the way! Yet now my second husband would never move back to where there is snow.

I think that the weight issue sometimes is more than just going from hyperthyroid to hypothyroid. Yes there is adjustment no question about that…I think for some it is a bit more challenging as we are all different and some people are going through different phases of their life like I’m in my 50s and still have not gone through menopause like my mother who was 55. Yet I know with hyperthyroid my period disappeared and with hypothyroid back in 2011 I was almost ready to lose my uterus it was a nightmare. I had period troubles my entire life so it was welcomed when it is not there with the hyper situation. Plus you are right about getting eurothyroid first as I think with this entire process it takes some time and I know some people who were heavier initially yet once on the proper amount of T4 consistently for some time, with diet and exercise got down to a decent weight. Yet again we are all different and in different phases of our life.

I hate to say I feel lousy and starting to regret with even the risks involved not having TT yet it seems too late now. I may be in a bad mood too because over 2 years of this Graves stuff and even with being told I was slightly hyperthyroid for years and no doctor did further testing, I am at the point where some normalcy overall would be very welcomed soon. You know as you have had a rough journey yet I pray things get better for you real soon.

Thank you for sharing your story with us.

MVK, Glad to hear you are doing pretty good most of the time. It is cool we are on the same timeline with the RAI. Sounds like your numbers are making good progress. Funny I see my endo tomorrow at 8:40 AM and we leave at 6:40 in the morning as it is 1-1/2 hours south of me. They squeeze me into my endocrinologist’s busy schedule so unfortunately sometimes we have to go so early. Hope yours is close by. I had some terrible muscle cramping in my calves when I was drug induced hypo back when and I do not want that back again yet one doesn’t know in this journey do we(?); plus right hand still tremors yet so does my sister’s and she does not have Graves! Well mine improved since the first set of bloodwork post RAI yet when this Graves thing started in 2010 I could not even hold a pen to write so progress has been made! I don’t even want to think about the weight thing right now as I just want to get on thyroid hormone and see where I go from there; who knows, maybe I’ll go eurothyroid with no thyroid hormone needed (my endo has 2 patients who ended up there!)!.. I’m taking all this in baby steps anymore as I have to take it one day at a time and not get depressed and fall off of my good diet and exercise program. I never had such a struggle with weight. I hope that darn depression doesn’t come back as I had when I was drug induced hypothyroid. I hope your appointment goes well and please keep us posted. I will too…thanks again for sharing…beach

[beach45]

in reply to: Depressed / Fatigued – Frustrated #1173041

I know this all can be very frustrating NLBatten. I went hypothyroid two times on Methimazole in past and I had the very same symptoms. It was horrible. Plus some statin drugs can cause muscle pain and typically that happens in the initial phase of taking them as my sister works with those and many other drugs at the FDA. I have been having my own struggles as at 11 weeks post RAI I still probably am not eurothyroid or hypothyroid yet know from still some hyperthyroid symptoms I am having; although in some ways I think I have some slight hypothyroid symptoms too. My issue is to not feel like I did when I went severely hypothyroid on Methimazole as what you talk about reminds me of that time. I mentioned that to my endocrinologist as he was not the doctor who had been following me the whole 20 months when I was on Methimazole; I started seeing him at the tail end. My endocrinologist will see me when I’m still hyperthyroid and is testing me right now post RAI every month. He said once I go hypothyroid and on Synthroid, it will most likely be just over the phone and call into the pharmacy if I need any adjustments to the Synthroid. He is a numbers doctor only; he said he does not go by symptoms. He told me at last months visit that the symptoms will occur before the numbers change. He also said like you mentioned over 50 TSH should not be kept at “1” yet between 2-3. I have spoken to another endocrinologist and he said that everyone’s TSH should be at “1.”

Something that works for me with doctors is to research and bring medical journals or medical articles all from reliable sources written by MDs that suggest guidelines that should be followed with follow-up to Graves treatment. I find I have to be my own health care advocate and to specifically discuss in my short amount of time with my endocrinologist, the key points or issues and have my information there in a folder to back myself up in necessary. The doctors do not go by hearsay though as I find. It is not easy and I still struggle and found a wonderful endo who would work with me yet I will not switch right now as I want to follow through for a bit post RAI. I also find switching doctors for myself, as I had to when the endo I loved left my area, is also very stressful.

I am finding with this disease there is no absolute and that endocrinologists do not all agree with how to approach this. I do know most of them do not prescribe T3; at least the ones I dealt with. I also have had experience that a lot of them only go by numbers only yet there are some out there if you search who go by both symptoms and numbers. It sometimes is wise to get a second opinion or more if the patient is up for it. I’ve already consulted with four endocrinologists and limited in my area. I have also mentioned that book “The Thyroid Solution” by Ridha Arem, who is also in the Physician’s registery on this site, and it talks about how the thyroid needs to be balanced properly before thinking that there are other problems such as RA or another issue. Even people who had depression if the thyroid was addressed properly with thyroid hormone, no longer needed antidepressants and of course this depends on the individual circumstance. No we are not numbers only, and I know how you feel as I too have been treated as such in past. I had so many miserable symptoms when I was drug induced hypothyroid, depression so low (I was never a depressed person and lived through many tragedies), weight gain, no motivation, horrible hair and nails, muscle cramps, pains all over, so fatigued I could hardly move and the list goes on; the doctors said it was not thyroid. NOT! I pleaded with the doctor at the time to reduce my Methimazole dosage and then in a few weeks I felt more like me; no depression and everything improved greatly except I swung too much the other way and no doctor could get me right so I had to have the 15 mCi of I-131/RAI. I don’t like to project, yet I fear that will happen to me again and I hear now what you are going through post RAI once you went hypo. I hope you can find another doctor who will listen and get you to the point where you feel yourself again. Hang in there. I keep saying that better days are coming and there are many success stories and sometimes it takes time and just the right doctor. I hope you both feel better soon!…beach

[beach45]

in reply to: TSH Testing Only Once Stabilized Post RAI #1172149

Thanks Kimberly!

[beach45]

in reply to: TSH Testing Only Once Stabilized Post RAI #1172147

That is very good advice Bobbi. So many promote the T3 thing. Yes many do feel well and some of that which is what some doctor wrote in one of my thyroid books here is psychological and also that people do not know what they are doing to their hearts and bones using natural thyroid with T3 long term. I’ve seen the studies posted here by Kimberly that most do well with the T4 to T3 conversion taking Synthroid and a small amount that need that extra T3 due to conversion problems. Well at my age, in my 50s, I don’t need extra problems and my heart was already racing for years and I have bone loss so I do need to be careful. Yet everyone is different and people need to try things for themselves sometimes. I understand better why the endocrinologists do not promote it.

[beach45]

in reply to: TSH Testing Only Once Stabilized Post RAI #1172145

Oh yes; I have heard of the natural thyroid hormone and all except one endocrinologist is for it. The one that was for Armour, etc., has left my area back in 2011. The other endocrinologists say that it is not consistent and the dosages could vary from one batch to another. Plus they are not big on the “T3” thing as they do not want to potentially recreate a hyperthyroid condition. Of course in all my readings there is much controversy on this subject and yes many do feel better yet there may still be the risk of heart or bone problems if the dosing is not done correctly. In that book “The Thyroid Solution” by Ridha Arem, MD, they talk about people feeling better on T3 as far as depression and weight control yet to be very careful because they gave an example of a woman who did become hyperthyroid on an incorrect dosage of the T3 and then she had all kinds of mental issues; once off of it she was fine. I have no clue though what I will do as after almost 3 months post RAI I am not hypothyroid just yet so with all my allergies I hope that I take to Synthroid and covert the T4 correctly to T3 yet I talk to many who do swear by Armour or other natural thyroid hormone; time will tell and I have regular doctors who would give me Armour if I wanted it yet I was also warned.

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