[beach45]

in reply to: T4-Only Versus T3/T4 Combination Therapy – Please Share Your Experiences #1184239

I am on T3 (Liothyronine) and T4 (Levothyroxine); that combo has helped me maintain pretty decent health; I have not lost weight yet I did not feel well on T4 (Synthroid or Levothyroxine) only and had a lot of problems; I have been on some supplements too which help me; I wonder too if my gut was absorbing nutrients and the thyroid hormone better that possibly the T4 alone would have worked better. I’m still a work in progress yet I know I have come a long way since May of 2012 when I had RAI; it was very up and down for me for 2 years prior on Methimazole as no doctor could get me stable. So even though I’m still not happy with the 30 lb weight gain, I can say I have many more good days of recent and I’m happy with incorporating some T3; I’ve listened to many thyroidless people on other sites and some do really well on T4 only and some seem to need T3; I also wonder too when they used less of the I-131 back when and did not destroy the entire thyroid gland if that makes a difference as some of those people I run into are on less T4 and don’t even need to add in some T3; I can only say right now what works for me; I’m also very fortunate my moderate TED actually improved as my thyroid eye doctor said the antibodies post RAI can be active 3-5 years; it may be 1-2 more years that I need to see him just to confirm that everything is good;I tried with T4 and doing everything right like waiting 4 hours from taking calcium or iron and waiting to eat yet that all didn’t make much of a difference! Interesting topic and thank you for bringing this up!

[beach45]

in reply to: Atlanta, GA Naturopaths? Lyme/Bartonella/Graves’/Hashimotos help! #1184224

I see an Integrative doctor in Marietta, GA; was not sure if I should submit her name; out of pocket costs; I get reimbursed through our health insurance 100 percent after meeting the deductible. With having family there in Roswell and Johns Creek it helps and this was my third visit and gotten to know the area a bit. My endocrinologists told me once I had RAI and they got my thyroid levels where they thought I should be, even though I was still symptomatic, to work with a regular MD to treat my resulting hypothyroidism; I had my gland entirely destroyed in 2012; some I know of past only had partial. It has been some journey for me also; not working yet; yet I can say my energy levels are coming up and I think I may be getting closer to the finish line; unfortunately T4 alone didn’t work well for me; that is okay as it works for some and some not. To me it is finding a doctor who willl work with you and listen too and if that had been an endocrinologist I would have stayed with one. My only issue still is the weight gain yet if I can have consistent energy throughout the day that is so very important to me and in time I know with becoming optimal the weight will come off with good diet and exercise. Well good luck with finding a good doctor in the Atlanta area!

[beach45]

in reply to: Question about Armour dosing #1182890

Hello justpete,

My experience with 1-1/2 grains of both Armour and Nature Thyroid, two separate times it made my TPO antibodies rise; I felt pretty good as far as energy levels yet my one doctor advised me to get off of it due to the antibody issues; some said well if you raise up high enough that issue should not occur. I hear from people on natural thyroid hormone such as Armour the TSH and T4 are suppressed. Sometimes my eyes were very itchy on Armour and I had some stomach distress from time to time as others told me similar; and was that a filler issue?. Yet I hear of many who have done really well on Armour thyroid; I hear of many post RAI or TT who do really well on Synthroid too! Personal decision and working with your doctor… I’m still trying to find the best thyroid hormone and dosage for me and if I cannot be on NDTs then I will continue being on a compounded T4/T3 medication in an acidophilus coating which has been working best for me for over a year now; dosed two times a day; still not completely there yet the antibodies are perfect now. My levels are getting better, still low TSH yet in range now…I hate to say I felt like I was dying on T4 only medication Synthroid or Levothyroxine (generic) and my FT3 levels stayed very low with a higher FT4 level; I know where I feel best as far as FT3 level goes as I charted my levels in an excel spreadsheet now at least 3-1/2 years on my Graves journey; I never had any hyperthyroid feelings with higher T3 medication thus far in fact felt calmer; yet that is me and any T3 to me a person has to move ahead with caution in my opinion and have a doctor who knows what they are doing with it whether it be adding in T3 like Cytomel or Liothyronine like I take or in NDTs; two of my four endocrinologists gave me warning on Armour saying it is not a very stable dosage of T3 to T4 and hard to regulate in a patient; I know some will dispute me on that and heck I know of many who do well on Armour thyroid. I kind of wish I did! Also too I heard that TSH can fluctuate during the day; the doctors I work with now go more with me by FT3 and FT4 levels and symptoms; I think I’m almost there with my compound; my TSH is low yet I still have hypothyroid symptoms. I wish you best of luck with this as I found for myself too trial and error and most importantly working with a very good and knowledgeable doctor who will partner with you on this and know how to guide you properly so you don’t go hyperthyroid and yes go by lab values yet also symptoms too in my opinion!

[beach45]

in reply to: RAI vs Surgery #1182903

WWW12 I had RAI and it was okay as I was scared initially; MMI was not working for me after almost 2 years of using it and my endocrinologist(s) were saying it was not good for my heart to be up and down so much on dosage; yet I was fortunate when I asked about TT he said whatever you decided also being he had a TT himself a few years prior; I even went on my own per another doctor’s recommendation to a very good surgeon in my town who had an excellent reputation for doing TTs and it all sounded good yet in the end I opted for RAI; I have friends online in other places and here in my town who did the TT option and did well; yet in my opinion if your doctor won’t give you that option and you want to go that route, you may want to consider seeing a different endocrinologist if possible; I had total of four; most of them were on the same page except one who was pushing just the RAI. My aftermath, not so great 2+ years post RAI yet not miserable either; I definitely feel in time I am going to get balanced out yet just not there yet; looking back what I went through with the Graves symptoms starting in 2010 and being on MMI it was pretty stressful and I’m a lot calmer now the first time in years as I had been considered “slightly hyperthyroid” at least 20 years prior to Graves going out of control as I had no clue back then what that meant! It is all a very personal decision yet I have heard of many successes with both TT or RAI; I do know too two of my endocrinologists told me that in recent years they use enough millicuries to totally destroy the thyroid gland like up to 30 mCi; and years ago they used less than 10 mCi which in some cases did not totally destroy the gland; I had 15 mCi and my gland is destroyed; I only am going by what my doctors told me as I wanted less than 15 yet my last endo said that might not do the job properly; I was so scared and now I look back and ask why was I so scared; I do think I’m slowly getting there and think with some more tweaking with the type of thyroid hormone and dosages I am going to get there hopefully in the next few months; there are so many who did well with either RAI or TT for Graves and are not on support groups. I also hear you as I had that pounding heart and panic too and it is scary and I had difficulty thinking straight at times as I just wanted it all to end; my endocrinologist was very honest saying you are trading one problem for another as it depends on the person how you look at that comment as I will be truthful my post journey has not been a picnic thus far yet that pounding heart and the panic attacks, etc., I definitely do not want to go back to that and glad that is over with for me; I’m amazed sometimes at how calm I am!…and whatever decision you make from what I hear from any others here and other places they are happy they made some decision and got their life back. It will be okay as I never thought myself (I’m now 55) would get through this thus far and then going through the change of life too at the same time; My one endocrinologist said I have a double whammy (she moved out of state 2011 as I loved her!) Best of luck and lots of good input here and please keep us posted!

[beach45]

in reply to: Combination Therapy T3/T4 #1181651

MiTh and others,
Great sharing; know this is a few months out since this post yet I’ve been going through the index/posts and finding different ones I can maybe respond to halfway intelligently from my own experiences; I used to be on here more yet I never forget this site and all the great sharing as one of the very first places I learned a lot about Graves disease! Lots of information out there yet I always say take what you need and leave the rest as I found for myself you can get into trouble if you don’t follow things how you and your doctor partner to help you achieve balance.

As far as when to take your doses as far as Synthroid and Cytomel, I take at the same time. I’m on a T4/T3 compound; I take it twice a day; then I take a supplementary Sustained Release T3 compound once or twice a day; total about 20 mcg T3 and 88 mcg T4; I think sometimes I do better with the less T3 yet then my energy tanks; I have no problems with palps or anxiety as we got other issues under control; yet with raises in T3 for me I gain weight as well with in past T4 only; so I am seeing this is really a balancing game which takes a while and it is easier for some than others;

I took my T4 in past before I went to bed and I slept the entire night; sometimes if you add in Cytomel better to take earlier in the day; the special doctor I see says take all the SR T3 in the AM only; in fact she believe in all SR and taken all at once in the AM; thus far that did not work for me; split dosages in the day helped me; early AM and then again early PM; I sleep well.

Yet the weight and energy thing are symptoms I struggle with; I’m not there yet; it is doable though as I see others; there are those who do well on T4 only; what I understand the conversion to T3 happens in the liver. With my talking live and listening to those post RAI or TT for Graves, I hear a lot of their FT4 is higher than the FT3; balance needs to be achieved for myself to feel more energy and weight loss as I’ve charted blood work, levels and symptoms about 3-1/2 years and I know exactly where I feel best; yet it is getting me there that is the challenge; too much T3 or T4 I gain; then I get set back; it is like my metabolism resets itself again; then the hormone doesn’t seem to work again for me; plus I hear many who have success on T3 only of late yet what are the long term effects on the heart and bones; yet I hear there are effects similar on long term T4 only; most doctors know how to dose properly on T4 only medication; I think in time that is going to change; yet with any thyroid hormone I say take caution as even too high amounts of T4 can make a person experience hyper symptoms. It is all what works for you and your doctor; yet I cannot go by levels alone yet I do see with my FT3 higher I function much better; and I am not a good converter from T4 to T3 which I see a lot of fellow post RAI patients have the same dilemma; too much or too little of the hormone yes is going to cause problems from my experience.

I hope things are going well MiTh and others as I see you were sticking with the T4 only; I only go by my experiences and hearing successes of others online and here in my town; or non-successes; sometimes I am finding in my four year journey thus far with Graves the more I know the less I really know. All our bodies and circumstances are different too so it definitely is not a once size fits all; yet I always suggest work with a good doctor who listens and partners with you to help you achieve balance as it can happen; however that is as we are all very different. Yes I agree this forum is very helpful because we have all somewhat traveled similar journeys having to deal with Graves whether on ATDs or post RAI or TT which I find is good because it is not just like having hypothyroid with a thyroid gland plus based on good research and studies. Hope you all have a great day!

[beach45]

in reply to: Why is TSH more important then Free T3/T4? #1182641

Hi Raspberry! Thanks! It is nice to be posting here again. It’s been a rough ride and I’m still trying to work out this whole post RAI getting to balance thing. Yes more research does need to be done which is how things will get changed in time. So many people have been figuring out that the FT4 and FT3 testing even post RAI or TT is very valuable and as indicators of how they feel; I know; if my FT3 is higher up in the lab value range, I feel great and I can lose the weight like a normal person can with diet and exercise; no have not gotten to that perfect spot. I can go higher on thyroid hormone, and feel better yet I gain weight either on too much T4 or T3. If I have less and like this past January I started losing a little weight, I feel like I’m so drained and cannot get out of bed. I do believe though from all my charting pre and post RAI that yes if it is calibrated right for the individual, that everything can fall back into place. Some people swear by NDTs (natural thyroid hormone); yet there again that can be tricky business just like with dosing T3; also the adrenals have to be watched. I’m sorry that your treatment results appears good on paper yet you don’t feel that great; I had that on ATDs; in some ways I had worse problems believe it or not on that side of the fence; the smallest of change in dosage I’d either be down in the dungeon hypothyroid and depressed, or too elevated as far as feeling hyper. There was not an easy way to get me to balance; maybe why I’m having problems on this side of the fence too; I see a couple of special doctors and no one has gotten things spot on and I feel that a couple things I did the first half of this year made things worse; I’m not getting any answers; yet I’m working it; I know there is a way to achieve balance as I have seen others do it; yet with efffort. As I recall, even on ATD Methimazole, my TSH never really came up much and my endocrinologist(s) looked to the FT4 and FT3 more; they said well we will use a TSH test as indicator post RAI once you get level; that never happened and I moved on to my regular doctor. My four endocrinologists and especially the last one said once you are regulated you can move on to a regular MD. Which I did. They helped me through what I needed help with; now I need to figure out where to go next as it almost seems the hormone I am now on is not even getting into my cells; yet when I do I will let everyone know that I had success. Yes I do believe the antibodies are still there yet right now mine are under control at least on a blood test of not too long ago. Best of luck Raspberry and appreciate yours and everyone’s input!

[beach45]

in reply to: Why is TSH more important then Free T3/T4? #1182639

Good topic; I wonder too about this; I hear a lot of talk that TSH is not as important post RAI or TT; yet then there is a factor of potential afib or bone loss; that is, if the FT3 levels are too high also. I think that TSH, FT3 and FT4 all need to be looked at along with patient symptoms. I know enough now charting my blood work, thyroid levels and symptoms for almost 4 years pre and post RAI, along with medications I was taking for thryoid, at what levels I feel my best; and with taking supplementary T3 myself, my TSH will always be suppressed as long as I take the T3 medication; if I don’t take it I will go hypothyroid again and have other symptoms that could put me at risk for other health problems; plus quality of life goes downhill for me; so I’ve worked with my doctor(s) to realize where my FT3 is best for me without looking at the lower TSH too much; for myself I’d rather have a better quality of life than have a low FT3 in range and then feel miserable as I have off and on post RAI; I’m having issues now and I know I need raises in thyroid medicine, yet having other issues which seem to be inhibiting the hormone from getting into my cells properly. I’m hearing more like what Abby says that the studies are done on people with a thyroid in place; in fact I am thinking that a lot of the treatments and levels, etc., are more based on patients who still have a thyroid gland and that more research needs to be done on what levels are appropriate and what types of thyroid hormone may be appropriate for those without a thyroid gland whether post RAI or TT; this is what I’m finding from my experience and not just on the Internet yet with people in my town who are coming out of the woodwork without a thyroid gland and really stuggling; because their doctors are dosing them based on the TSH only blood test. So to answer your question from my point of view, experience, talking with many doctors, research and listening to others struggling post RAI or TT, I believe that the FT3 and FT4 tests are much more important than just TSH testing.

[beach45]

in reply to: Is there always weight gain after TT? RAI? #1182699

I had RAI May 2012; I gained about 30 lbs on antithyroid Methimazole in 2011 when they raised my dosage for approximately 3 months from what I was taking in 2010; I never lost that weight; I gained about 5 lbs after the RAI, the 5 came off; went down a little more and now of recent I’m up to where I was almost post RAI; total 35 lbs. Do not seem to convert well T4 to T3; having issues with different types of thyroid hormone and dosages; working some adrenal issues and gut issues, so I’m kind of in a limbo; yet I think when the patient is on the proper thyroid hormone and dosage for them, that with proper diet and exercise, the person will drop and maintain the weight; the thyroid hormone is not a weight loss drug; it is to stabilize our levels for us and hoping to get to the most optimal levels in range for us and then it makes it easier to take the weight off that might have been gained as a result of treatment. I believe possibly if I had not gone on the antithyroid drugs for 1.5 years prior to RAI, maybe I’d not have gained that much post RAI; What a couple of my doctors say I’m in a metabolic syndrome right now; I’m very conscious of my diet and exercise so I cannot say I’m gorging myself or eating bad food selections and I’ve had all kinds of blood work and not gluten sensitive yet I’m still careful. In speaking with different people who were treated for Graves disease it is not a one size fits all as I’m finding out; I know people in my town now who had RAI or TT and some are struggling still years later post treatment with excess weight. I know people who gained minimal post RAI or TT and got on the proper type and dosage of thyroid hormone and weight was not a concern. I personally wish I had not had the RAI yet not much choice as antithyroid was not getting me balanced as I was up/down and my endocrinologist(s) were very concerned about my heart. They wanted to prevent the potential for a thyroid storm as I was in pretty bad shape. I am not happy with the weight gain or low energy levels, yet I have hope with my good doctor(s) I’m going to get to balance at some point in time. I suggest to people work with a good doctor and become as balanced as you can be with thyroid hormone (testing FT3 and FT4 and not just TSH) and your own good health efforts, and it should be okay in time even if there is some weight gain, in my opinion. Best of luck!

[beach45]

in reply to: does armour activate Grave’s antibodies? #1182733

I had radioactive iodine back May 2012. I did not have success thus far with Synthroid/Generic T4 or Armour or Nature Thryoid; the Natural thyroid hormones actually did make my TPO antibodies rise; I did consult with an Integrative doctor who works pretty well with post RAI patients (and his wife has Hashimotos) and he told me yes it has the potential to raise the antibodies; I had some effects which led him to believe antibodies were higher and when he tested me, such were the results; I went on a T4 / T3 Synthetic compound and just doing okay yet those antibodies came down and things with them are perfect for right now. I also did notice my eyes were more itchy on the Armour and I have moderate thyroid eye disease. I was kind of disappointed as I heard some people doing well on natural; in fact some people who had RAI years back; I don’t have supporting research although I vaguely remember reading something back when yet don’t remember where. It was back end 2012 and very beginning 2013 when I had tried Armour then Nature Thyroid. Well everyone is different so may be worth a try? I think I have to stick with using the little bit of T3 medication with the T4 for now anyway. Best of luck with this!

[beach45]

in reply to: TSH vs FT3 and FT4 #1180482

Kimberly,

Thanks for sharing that as I should have looked up the study and gotten the proper link. I realize that GDATF likes to use the proper medical sources for information sharing as I know too my own doctors are the same about the information I share with them.

Beach

[beach45]

in reply to: TSH vs FT3 and FT4 #1180484

Hi Carol,

Your welcome as yes we have similar journeys; I also have moderate TED; I found for myself when my FT3 especially is going lower in the range, my eyes bother me more. I’m being checked every 6 months for that. Thyroid eye doctor says that next 3-5 years the antibodies are most active and why he needs to check me. He advised I stick with an endocrinologist yet my endocrinologist told me after being with him 1 year that I could now have my resulting hypothyroid condition be treated moving forward by my primary care physician. Also that many post RAI for Graves are more susceptible some time afterwards to developing diabetes. I’m concerned over that as there were some diabetic type issues on my father’s side of the family.

I was considered “slightly hyperthyroid” for years since my 30s off and on. I never checked into that. I never questioned it! I had a CT scan with iodine contrast in it in 2009 when I had my left ovarian cyst scanned which they thought was possibly a tumor yet turned out not to be; I believe that iodine is what triggered my Graves/hyperthyroid. I read recently in a medical article that this happened to someone and they said do not give that iodine which is used in scans to an already hyperthyroid person; and another person whose son was hyperthyroid and even with medical professionals knowing he was hyperthyroid and he almost died having the iodine contrast in the scan which almost prompted a storm; as I mentioned this is documented about this contrast media that contains iodine which is associated with an increased risk of thyroid dysfunction. Well the information is out there when searched.

My TSH in 2007 was 0.018 and at that time per a nurse practitioner I know well who said that my primary should have seen I was hyperthyroid and done something about it. I never confronted him. Now with my problem I confront every single doctor and I don’t care if they get annoyed because it is my body and I have to get to wellness so I can function again as a normal human being so I can go back to work; This has all been nonsense to me and it is time that some doctor gets me back to where I need to be; which every person is entitled to. I feel if I had been treated better back when, I believe I could have probably gone into remission. Instead I had to almost storm in Spring 2010; I was very sick. Now I’m very sick in another way. Even my last endocrinologist said you are trading one problem for another! A very honest man! I’m losing a lot of faith in the medical community in general and now they made me fat and not functioning properly instead of working harder at ATDs back 2010 through May 2012 to get me stabilized and into remission, and maybe even trying such methods as block and replace. I feel I wasted 2 years on ATDs and instead gained a ton of weight which I have not lost yet and another doctor at a weight loss seminar recently said I probably now have metabolic syndrome; I laugh because the post RAI weight I lost (7 lbs) yet not the weight gained on ATDs; which all the diet and exercise I do makes no difference and getting thyroid levels right for me is most important yet there is more that has to be done; and sometimes the little bit of T3 alone doesn’t always do the trick I am finding.

I already seen what has happened to a couple of women here post RAI and TT and that they have problems with diabetes and a bunch of other health problems they are medications for. Sure the T4 is not working for them and they stay heavier and thus when we weigh more in time we are more prone to develop other health problems in time and most do not complain nor know that if their thyroid was working better for them and not based on TSH alone, they could also feel better. I see for myself on T3 that I am not fogged and I have more energy and I have not had any heart issues with it. In fact I had more heart palps when I was on T4 medication alone.

Yes maybe T4 medication works for some. Yes the WSJ article is great and I printed it for my DO although I don’t have to tell him as he already works outside the box; with reservation too of course. I bet you will do great with this new DO. You’ve been living this a very long time and I pray for you that after all this time you start getting the proper treatment to get you to wellness.

I just feel not enough attention is placed on this thyroid business and doctors are not up on it as much as they should be; yet there are great improvements being made recently by people who care as I see and for myself I am not going to settle for having a whole lot of other symptoms and health problems due to being on medication that is not working right for me because some doctor says that is what you have to do or take! I listen to women here in my town who had RAI and afraid to confront their doctors that T4 alone is not working for them. We are supposed to be partnering with our doctors to help get us to wellness. Your new doctor sounds great!

I’m sorry your TED is getting worse. I hope that gets resolved quick for you with proper treatment. That scares me the most as I know I am not out of the woods with that. Yet for me I will say that my TED seemed to actually improve after RAI. That doesn’t mean things will stay stable though as why my thyroid eye doctor will be checking me now 3-5 years more now post RAI.

I agree what you say that RAI can leave some thyroid function in place with tissue still being there and maybe is a problem. A women here who had RAI I believe about 7 years ago is constantly struggling with feeling well and a doctor who also had RAI told her that thyroid could take some time to die off completely and why levels cannot ever be completely stable. His theory though. For me I just believe it is not a one size fits all as some here have had much success post RAI and going on T4 and you probably don’t hear from them anymore or I know one of my husband’s family members who had RAI and on Synthroid over 20 years, feels great, looks great, no other health problems….is it that if the severity is worse going into it makes a difference with how treatment will work post RAI or also we are all wired differently so to speak as nothing has been easy for me in past with medications or when I’ve gotten sick as I always get hit very hard and have more complex issues than some others. That same doctor I mention here who had RAI said he also believed that the worse the circumstances prior, the more difficult post RAI.

Yet I believe you will get there and myself too! Being proactive by writing here for input and getting a new doctor and in time things will get better is what I believe. Of course sometimes even with the best treatment things don’t settle down overnight. I have so many books on Thyroid and I truly enjoy the book “The Thyroid Solution” by Ridha Arem, MD/endocrinologist as he is on FB also.

Me too I live in an area where I have to travel for the best and I might end up in the Atlanta area at some point to work with a group who will help me with metabolism issues; yet first I have to get my numbers into the range that is best for me; unfortunately, one step at a time. My last endo was 1-1/2 hours one way going every month for a year; had total 4 endocrinologists, only one was open minded and left my state and I loved her!

Better days are coming. There are many of people out there who have similar issues yet sometimes are also afraid to speak up. I just know from talking to people here in my area who believe they are not getting the best care for their hypothyroid condition. You’ll get there!

Take care; best of luck and please keep us posted with your new DO visit.

Beach

[beach45]

in reply to: TSH vs FT3 and FT4 #1180481

Hello Carolffva,

I thought maybe this link might help out regarding TSH testing post RAI. I know that we are supposed to post only certain links and I thought since this was a British study referred to, that it would be okay; if not I can remove it Kimberly:…..Please see link below to British study provided by Kimberly….

I had RAI over a year ago after two years of no remission and up and down on antithyroid drugs. I’m 54 now and this Graves ordeal started at 51. I’ve studied this Graves/thyroid issue to death reading medical journals, talking with different doctors and hearing other patients on this forum and other sites who have had successes. It’s definitely not a one size fits all.

I do know from experience with this that post RAI that my TSH tends to be low and my FT3 and FT4 is what seems to be actually the tests that coincide with how I feel; because pre antithyroid drugs my TSH was very low and I felt very hyperthyroid; now with a very low TSH yet lower FT4 and FT3 my body feels very hypothyroid. So judging how I am feeling post RAI I feel many patients maybe cannot be dosed by just TSH alone. Only from how I see my ups and downs as I’ve charted my lab work, medications starting with ATDs and now thyroid hormone, and symptoms. I am seeing a pattern too for other women living by me who are post RAI or TT for Graves that they are never feeling right and their doctors are only dosing by TSH. I will say too though when you are adding in T3 whether it is from DTE or Cytomel, your TSH can tend to be lower and FT4 lower too and having to be careful to find a balance there with both FT3 and FT4. On Synthroid or Generic T4, my FT4 was always higher, FT3 very low, and yet my TSH was still a bit lower , yet not as low as when I added in T3.

I am fortunate I have a newer MD, a DO, who is working with checking both FT4, FT3 (also TSH) and listening to my symptoms. I have to admit though I have not had much success as of yet; tried Synthroid, no good; Generic, no good, Armour, gained weight and other problems, T3/T4 compound started to lose yet extreme joint pain some wheezing and not much energy, tried Nature Thyroid gained some on 2 grains yet energy levels were better, and now on a combo NDT and Generic and still gaining/bloated yet no joint pain or wheezing yet drained. I cannot get anything right. I know what to do with not taking calcium or iron or anything that would affect absorption 4 hours either way from taking the thyroid hormone yet levels are nowhere near where I need to be; I will say on the compound I did start to lose a little weight. I think if I got a just little more T3/T4 maybe with my levels coming up a little more I’d feel less joint pain and more energy. I’m fortunate to have a very good compounding pharmacy in my area which is very reliable and been here for years as you have to be careful with that. I’ve found I had allergies to fillers in thyroid medication too which is a problem. I believe there is another study in the Washington, DC area on timed released T3. I listen to some people on other sites saying why NDT does not work right yet my doctors do not believe in the saliva cortisol testing or RT3 some of these people recommend and I’m limited in my area of doctors so I work with things best I can. I move forward with caution though as there is a lot of misinformation out there and people have to work with their doctor(s)advising them too as what I have experienced. There have been cases of people who got sick on taking too much NDT. I like to go with what my doctor agrees to yet partner with him on this also to get me to where I need to be. He moves with caution on incorporating T3 into my thryoid mix. I don’t take supplements on my own without discussing with my doctor first. I don’t know sometimes for some people if there is an easy answer. I do know though that going by the TSH alone for me at this point doesn’t help much with getting me to wellness. I do know my TPO antibodies rise on NDT which can be common and is not a good thing. I also know that from my 3 years of charting my levels I feel best when my FT3 and FT4 are mid range to higher; that’s just me; we are still working on that though.

I appreciate the hypothyroid information from Kimberly re: ATA updated guidelines. I do know even though I did not have my thyroid taken out (like ATA refers to on that page 17) that with the RAI my endocrinologist told me I basically have no functioning thyroid that it is dead and I could see from my numbers on Synthroid alone originally after RAI I had a T4 to T3 conversion problem.

Good luck with your new doctor. This is not easy for some of us I am finding out. I’m determined to find the right thyroid hormone and dosage hopefully and it’s been quite a challenge and difficult when you don’t feel right a lot of the time.

Beach

[beach45]

in reply to: Dose increased yesterday/feeling worse today (?) #1178277

Just to share my experience if possibly it can help: I was on Methimazole 2 years; I had an excel spreadsheet which I updated wtih every dosage change. I shared the updates with my endocrinologist who appreciated it. I did not feel full effects with medication changes until maybe 6 weeks after changing; I did not have significant improvement in levels until I went from 10 mg to 20 mg; everyone is different though. Unfortunately I did not go into remission and decided on RAI May 2012.

I had all kinds of joint pain, muscle aches, fatigue, mood swings, the whole nine yards and it was probably due to levels changing, my FT3 was at times going too low for me, and possibly some effects of the ATD medication. I had some moments of normal. Patients use a beta blocker for the rapid heart rate until the antithyroid medication gets the levels where they should be. Although I have a friend here who had RAI 7 years ago and is still on a low dose beta blocker. I don’t think that is the norm though. Yet the last year with small dosage changes up and down I was feeling like I was too up and down, hyper to hypo to hyper again and never balanced, numbers all over the place, so I opted with a strong suggestion by my endocrinologist to take the I-131/RAI; TT was an option yet I voted against it even with my moderate TED. I am happy I did this as a year later I can see that in time when the doctor gets my thyroid hormone and dosage correct I will feel more like I did back 3 years ago when this all started! For right now, months after RAI my eyes improved believe it or not. In fact I was told I don’t need glasses which is strange because I’ve worn them for distance for years. We are all so different with our experiences in this journey yet then there are similiarities.

It can be scary along this journey and there is fear of the unknown yet I found working with a good doctor, sharing on forums like here and just taking it one day at a time knowing that if Plan A did not work then I’d go to Plan B, which I did due to not going into remission; yet many have gone into remisson on ATDs or stablize on a lower dosage. It takes time and a lot of patience what I found!

Glad to hear you are doing better and it does get better as like for me things look completely different now than they did in the beginning of my journey three years ago!

Best of luck!

beach

[beach45]

in reply to: Does TT cure Graves? #1178986

I feel the same way I’ve heard all different stories; yet I am at the point where I am just glad hyper symptoms are gone and I’m slowing getting to being balanced even with taking a long time.
I don’t worry about what may happen anymore, as for me it is what it is.

Yet I like what you say Karen what Forrest Gump said; great!

beach

[beach45]

in reply to: Does TT cure Graves? #1178983

From my 3 years on a Graves journey with treatment for 2 years with antithyroid Methimazole, RAI a year ago, and now struggling to get my thryoid hormone and dosage perfect for me, I don’t think that TT or RAI is a cure.

I have consulted with many doctors regarding this along my journey, including 4 endocrinologists. One commented that you are in need to destroy a perfect healthy thyroid gland which was being attacked. Of course you can say how can it be healthy if it is malfunctioning?! Antithyroid unfortunately did not put me into remission and I won’t elaborate as that is now past.

The endocrinolgoist that I had for one year who followed me through the last months on Methimazole and saw me through RAI and a few months post, said well you are trading one problem for another and it will predispose you to other autoimmune diseases.

My thyroid eye doctor said the antibodies are active 3-5 years post RAI. I am not sure about TT yet I thought I heard not as active as long post TT. Yet we are all different. Most of my doctors, endocrinologists included, were not concerned about antibodies.

Yet if there was a cure, to me, then like the endo who commented about destroying a healthy thyroid, medical professionals would know how to stop the antibodies before the thyroid is affected.

So it is a fix to stop the production of thyroid hormone so the patient no longer has debilitating hyperthyroid symptoms such as what I experienced back starting in Spring 2010. Yet what about the underlying cause that possibly was a compromised immune system and how is that being addressed? Plus I know people who had TT or RAI and years later no more health problems as they take their thyroid hormone daily and are functioning just fine. Yet why some people have more health issues down the road even on thyroid hormone?

For me I just have to take responsbility for my health and do the best I can moving forward. I am sure there can be many different answers for this question especially from doctors. I used to ask why or how this happened yet I don’t much anymore…so for me now, I am just happy to not have Graves symptoms which were becoming very serious and that alone arresting that situation with RAI to me has already improved my health and I do the best I can now to stay healthy.

Best of luck for you on this journey!….beach

[Author]

Posts