[beach45]

in reply to: Merry Christmas #1176057

Thank you and Happy New Year!!!

[beach45]

in reply to: Diagnosed in July, had RAI, on Synthroid, feel crazy. #1176091

Kimberly, thank you. I take this one step at a time and hope for the best!

Yes I would email or PM you first if I have something in question that I may want to post. The Walter Reed study is small yet it is a start as I know that for changes to occur, studies have to be done and results documented and released. I know things are different in parts of Europe in regards to the T3/T4 issue and maybe in time things will change here also.

For myself I wish things had been a bit smoother like it has been for some. Yet it just hasn’t worked out that way thus far yet hopefully slowly with effort.

That is true all three treatment options have risks and benefits and there is not a guarantee that things will be perfect. For me the main thing was to get the Graves under control so I would not storm. Antithyroid didn’t work for me and I had to do something and accept how things turned out thus far.

It can get better though!

beach

[beach45]

in reply to: Diagnosed in July, had RAI, on Synthroid, feel crazy. #1176089

Hello,

I had RAI May 2012 and it has been one miserable ride for me.

I had to come off Synthroid as I was feeling like death 4 months. Generic didn’t help much better.

I also have my FT3 levels checked which were very low for me recently as I charted where my levels were (TSH, FT4 and FT3) for 2-1/2 years on an excel spreadsheet with symptoms recorded too…both pre and post RAI. I was on Methimazole 24 months also with an up and down rollercoaster. I am going into menopause so it is being found too the mix up of female hormones is not helping this situation either!

I had one endo here who believed in trying different thryoid hormones and she left my state before I had RAI; very open minded.

The three other endos I have had thus far as only for Synthroid/T4 medicines alone.

I am on something else now which I will not discuss yet in recent days I have changed around significantly. I am working with a very good doctor now, a DO who listens and has a great background working with getting thyroid balanced for the individual; it is not a one size fits all. My husband has a cousin a doctor in NY who had RAI 20 years ago, a low dose of I-131 and she went hypo a year later and no problems on Synthroid all these years. Mine was totally destroyed as I had a higher dose. I think in time more is going to come out that some people may need a little extra T3. Yet people have to work with their doctor on this of course!

I already spoke to a woman at Walter Reed Medical in Bethesday MD, where there is a clinical trial going on with T4 (Levothyroxine) vs. Armour. The results are very interesting that are already coming out and results will be revealed more in 2013. I wanted to be part of this study yet I have to be living in the area which I do not.

I think what people will find that after RAI you have to find your own niche and what works for one for people here or anywhere, may not work for you. It is working with the right doctor whether that be an endocrinologist or some doctor who is well informed with working with getting thyroid balanced. Some people do very well on Synthroid alone post RAI or TT for years; some do not and some just suffer in silence and take a bunch of other medications. I am someone who will keep searching for what I need until I find it.

For myself, I very much regret taking RAI yet I had no choice because my Graves was out of control and I suffered too with that with a very rapid heart rate that I could have stormed. Doctors were very worried even with small changes in antithyroid, Methimazole … they could not control my levels as I either went too hypo or too hyper.

Just from what I research and hear I believe in time change is going to come down. There is no reason for anyone to suffer just because they have their thryoid destroyed or removed.

It also sounds like you are on the Synthroid a short amount of time and you may not have found the perfect spot for you. Remember as I am finding out the hard way, my doctor is supposed to partner with me on this; he is working for you not the other way around. Sometimes too though getting to where we want to feel better also takes time. I truly believe having your own thyroid or some who may have some thyroid left if it was not totally destroyed is better than having none and I think it may become more challenging yet people do get there in time. Some even on Synthroid alone can take months to a couple of years for some unfortunately to get to the right spot. Hang in there as with getting the right care you will get there as I believe I also will too in time! Best of luck!….beach

[beach45]

in reply to: Synthroid Recall #1175813

Well it can get better for people. Many do. I had RAI May 2012; I have a history of not doing well with any medications. I fought to stay on Methimazole approx. 24 months yet I was not going into remission and I was up and down too much even with the slightest increases or decreases. I was told I was staying hyper too long bad for my heart and up and down is not good either. For me I am not sure if I ever felt better either way (pre or post RAI) although reassurances from people that things would get better, well they have not. In fact I feel worse a lot of times; my numbers are almost in range; FT3 a bit too low for me though. Maybe I will add in some T3 at some point. I’m working with my doctors on this. Still working with doctors to get me to where I need to be and I have hope. We are all so different. Best to do is give it time being newer to post RAI as with many it does and I know of some where it took 2 years; some much less time and I have a friend here who 7 years now post RAI on Synthroid has never been the same; gets tested; levels normal and for other things too and yet she has never felt the same since RAI. A doctor here too who had RAI same thing. Yet I know people who did just fine so it seems to me it can be a mixed bag. Hang in there though. Just like I am. Yes it is not comforting to hear of a recall especially of a medication you know you are going to be dependent on the rest of your life! Many do fine on it though! Good luck to all! beach

[beach45]

in reply to: Synthroid Recall #1175809

I hear what you are saying! I have concerns too! I cannot go into things though. It is good though to talk with others who have had successful times post RAI with Synthroid like my husband’s cousin on it 20 years now post RAI and doing very well. I have not been having success myself. Every individual is different yet I do know because of going hypothyroid I have to take something to avoid crashing to a very bad hypo crash again and may need to go another route in time yet I know I have to take the Synthroid for now until I can try something else out. beach

[beach45]

in reply to: Synthroid Recall #1175805

Well if the person is hypothyroid after RAI they need to take thyroid hormone;
for me I find there is no perfection with this;
there are many who do just fine on Synthroid alone after RAI and do not have many changes over the years afterwards; so it is questionable if there are that many inconsistencies;
of course in the beginning first few months or a year or so, that there could be some tweaking done.
NO perfection when it comes to prescriptions. I talk from knowing someone who has very reliable information from where they work. Yet we have to carry on and do the best we can. I see in the newsletter there were certain batches in specific doses and your pharmacist can track that. These things can happen. I know there were problems for instance in past with Tylenol and it is just getting back on the shelves slowly after recalls as per a pharmacist who I spoke to. Well just my opinion only; if I had my choice I never would have done RAI as I am having nothing except struggles with post treatment yet I hope people share who have had positive experiences with their T4 medication because they are out there! I personally though would be scared to not take my thyroid hormone unless I had been confirmed eurothyroid and not needing T4 after RAI. Good luck! beach

[beach45]

in reply to: Help with understanding test numbers please #1175733

MVK,

I am finding a lot of people on T4 alone just settling! I am talking those too who have not only been on it short while yet long term. Balance is key and working with a very good doctor as I am also finding a lot of doctors are not willing to work thoroughly with the patient with thyroid as they either do not know or they just do not have the time. Yes there are people who do very well on T4 alone and I am not saying that this is for everyone as I want to make that clear to all. It is just that what you just said here is what happened to me; I felt well for a little bit on the increase of Synthroid and now I’m back to lousy; there are some theories on why yet I won’t share that here. My indicator is that I have a higher FT4 yet my FT3 is not budging much and it was not like that in past. When both were in the range just over middle together this is where I felt best. For me off and on in my lifetime I had a very low TSH and I felt just fine. Yet again everyone is different. When I feel better working with a doctor who listens to me and gets me to where I need to feel, I am going to make my voice heard. It is wonderful when people have no problems post RAI or TT with their medication yet there are many out there who are afraid to have their voices heard and just settling for symptoms. If I cannot get my doctor to work with me to test my FT3 then I plan to move on. I had to ask my endo this time around to test it as we have had a very interesting relationship in the past year together and I speak my mind because it is my health not theirs and you have to be your own health care advocate. Problem is that it is true that FT3 flutuates yet so does TSH. My TSH has been around the world and back and it does not go by what they say as far as levels because it has lagged always behind my FT4 and FT3 levels changing. If you have good health insurance, there is no reason why you cannot have it tested, the FT3 that is. A lot of endos and doctors do not think it is necessary. I believe in time, and maybe not in my time, things are going to change with treatment for pre or post Graves treatment yet it is going to take more research and time; because there is not enough research out there on the benefits of added T3 for patients post RAI or TT yet I know there is a newer timed released T3 out there somehwere in Europe. I printed that medical article for my endo too and he disregarded it saying we are not doing that in the US here just yet; not enough research! I use Refresh Optive, Lubricant Eye Drops and they work well with my Moderate TED. So far, thank God and I hope it continues, that my eyes actually seem better post RAI. Yet time will tell as my thyroid eye doctor said those antibodies are active at least 3-5 years post RAI. The supplements sound good as I take fish oil yet I was told caution with extra selenium even though I heard it was very good and I started eating 1 brazil nut a day as that is packed with selenium. I am sure in time more will be revealed. I wish you much luck and if you ever want to talk on messaging too!…beach

[beach45]

in reply to: Help with understanding test numbers please #1175731

EWMB,

Well I am not a doctor yet I am someone who can analyze my situation and for me I know that I am not converting well from T4 to T3. Which is why I personally did not want to do either RAI or TT because I know my body well after 53 years and that I am not surprised that I am having problems with just Sythroid alone now 7 months post RAI.

Since your circumstances changed with you seeming to be going into menopause, it is possible that you need to have your medication tweaked. The test that I am familiar with are the FT3 and FT4 tests which I was told are the best indicators; along with TSH testing of course.

I found this comment yet for some reason I could not find the New England Journal of Medicine Article yet somewhere here it was posted in past: “Although the predominant treatment is T4, some medical practitioners question the value of T4-only treatment. In fact, a New England Journal of Medicine article reinforced the significance of T3 in treating hypothyroidism, which lends support to practitioners’ concerns.”

To me there has not been enough studies of this; from my own experiences though and talking with some others with similar some do have this T4 to T3 coversion issue which can arise due to certain circumstances and it seems as though your circumstances has changed. The endocrine system is very sensitive. True that T3 can fluctuate a lot too and testing of it should be consistent. A lot of doctors do not even test that; only TSH some and some both TSH and (T4 or FT4).

I do not want to post other stuff I found as I am very careful what I post here. Plus this thryoid business is not a one size fits all ordeal as I am finding out and finding out from also talking with others.

Naisly has an excellent explanation there in her link. I am sure in time that with more research, if there will be because my endo has told me that not much research has been done on Graves in the last 10 years and he works for the Medical University by me, that it will come out that more people are having problems post RAI or TT with conversion problems; and it may not happen initially yet sometimes could change years after being on T4 alone. Depends on changing circumstances and I do know also our bodies change every 7 years. If you look in the book store on Hypothyroidism or Graves there are a few books yet there are varying opinions on the subject. Remember too wherever you numbers end up in the lab ranges may not be right for you as far as you feel yet maybe be just fine for another person. Why I kept a log of all my blood work and results and symptoms on my TSH, FT3 and FT4 while on Methimazole 23-24 months and then post RAI almost 3 months on Synthroid; because I can see where my numbers need to be; yet this is a very sensitive thing just like Naisly said in the comments in her link that T3 can fluctuate. Hope you get the doctor to work with you to get the right testing and figure out why you are feeling hypo…beach

[beach45]

in reply to: Help with understanding test numbers please #1175727

EWMB,

I am finding from my own research that TSH is not necessarily the best indicator. Even an MD (endocrinologist) said this in a talk I viewed in the last year yet things have not changed yet as not enough research done.

I believe like for myself, if my FT3 is not right where it needs to be for me I am still feeling hypo and I don’t care if my TSH is low and out of range right now. Because I go by my symptoms not by the numbers. Sometimes Synthetic T4 alone does not do the job for everyone and sometimes too much T4 in the system can be a problem. I only say this now from my own experiences and talking with others who have similar.

I am slowly getting my numbers where I need to be and I am seeing the “menopausal” symptoms I had like the hot flashes and mood swings, etc., are slowly fading. Not the weight issue though and not the joint pain yet I think in time I will get this better under control. I will be going soon to my Internist who also is agreeable for me to see a “DO” who is also part of that medical practice who I know has helped some with thryoid imbalance. Plus I am finding going into menopause too at the same time with fighting with this post RAI thing myself, I may be struggling more than others. I’ve compared notes with those who had RAI way before menopause and ones post menopausal and some of them did better than I; yet we are all very different. This Graves journey is not the same for everyone and it is important to find a physician who will work with you especially if you are having issues other than maybe some others and thorough testing and monitoring and sometimes thinking outside the box is what is needed; these are only my opinions though with much research talking with various medical professionals, reading a lot of medical journals and listening to others experiences over 2-1/2 years now on this Graves journey myself; you may need some tweaking! Good Luck with this!

[beach45]

in reply to: hypo after RAI #1175680

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

[beach45]

in reply to: Levoxyl Dose Changes with weight gain/menopause? #1175610

Vanillasky, you are so right that men too put the pounds on with age. I was just thinking that watching TV last night as a couple of actors who are in their middle age and how their faces have filled out!

EWMB, yes the elepitcal is a good piece of equipment for those with arthritic knees at least with myself using it at the gym in past and being recommended by the gym trainer. I have had very bad knee pain over the last 3-4 years which worsened since being on thyroid hormone which I hope it is not the Synthroid because I read in a drug write-up that Synthroid can cause bone loss. Yet if levels are not right things can flare up too. I have known arthritis in both knees to start before this yet now it has worsened; top it off with 20 extra pounds and that does not help! I love my treadmill yet it is rough on my knees and even my stationary bike to some degree. I try to walk more yet lately my knees are worse and the pain is bad. I think I’m still very unbalanced as I seem to be gaining more as I increased my Synthroid as my FT4 and FT3 are just not right for me. Oh well. Seems there are times the thyroid hormone can use some tweaking as what I heard from others too….good luck.

[beach45]

in reply to: Levoxyl Dose Changes with weight gain/menopause? #1175607

I find from friends and family who went through menopause that they had no significant weight gain; some had to work a little harder at maintaining. I live in an area where there are lot of older women. People who don’t work at it have issues though with weight whether pre or post menopause. Plus I have seen people on hormones who had less trouble with weight and then some who do. It seems to be a mixed bag. For myself, it’s the darn thyroid treatment that put my weight out of whack despite diligent diet and exercise and I surmise that a lot of this is water weight also and my other hormones thrown very much out of balance. Just like some women say they gain a lot after having children and some never lose that weight yet I have family and friends who are in excellent shape and not overweight after having kids. I am seeing this is not all a one size fits all just like with post RAI because many had no problems with weight gain and for me it’s been one problem after another with this weight thing so I believe also for menopause too it is not a one size fits all. Yet I do believe that anyway as we age we have a tendency not to burn as many calories as we used to and we have to watch diet and exercise more carefully to maintain due to metabolism changes; yet again may not be the same for everyone. Just my opinions though!

[beach45]

in reply to: Levoxyl Dose Changes with weight gain/menopause? #1175605

I have to lose 20 lbs too and with my diligent diet and exercise I cannot lose 1 lb. I know something is very wrong. Yet I have hope when I get to the right physicians who will start working with me and listening, that I will get back to where I need to be; I don’t count the 15 lbs that I lost when Graves hit me in 2010; total weight gain is 35 both on Methimazole and post RAI yet realistically only need to lose 20. At 53 my concerns are mostly because of health although I don’t want to have to keep buying larger size clothing… as being heavier could make me more susceptible to other health problems. I am sure a lot of it is my FT3 levels too low for me as I know where the level needs to be and compared notes with some others. Prior to all this, I was in excellent shape and looked great at 51. Except for the fact I developed an autoimmune disease…Now I look like I aged at least 10 years. Oh well; somehow better days are coming as I know the weight issue is bad for some and for others not! Good luck to all in their journey!

[beach45]

in reply to: Levoxyl Dose Changes with weight gain/menopause? #1175602

I am looking forward to some normalizing myself as I have had a rough time now 2-1/2 years and since either antithyroid or now post RAI cannot take any weight off no matter how good my diet and exercise program is. So I am hoping once my doctors and I get this sorted out along with both my thyroid and female hormones, maybe some of the excess weight and bloat will start coming off. I am finding everyone is oh so different and some don’t have the same weight issues that I’ve been struggling with yet then again some do. I went from a size 6 to now a size 12 in this timeframe and I am hoping this is the end because I cannot afford to buy any more new clothes!

[beach45]

in reply to: Levoxyl Dose Changes with weight gain/menopause? #1175600

I found the link under Naisly’s postings: http://www.thyroidmanager.org/chapter/adult-hypothyroidism/

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