[beach45]

#1059076

I am 3 weeks post Radioactive Iodine Treatment (RAI) for treating my Graves disease. I suspect since I had 15 millicuries of RAI that I will eventually go hypothyroid; although my endocrinologist actually has a couple of patients who are eurothyroid post RAI.
I hear different stories on the Internet how most people do not do well on a levothyroxine drug (example, Synthroid), and that people need to have T3 like Cytomel or Armour Thyroid in order to function better, lose weight and/or improve mood like depression. How many who have had RAI or TT really experience a problem on Synthroid alone or is it just not as bad as it is reported? I have read, listened to people in my town, and talked to doctors about this and my experience is that most endocrinologists will not use T3 to supplement T4 and that too is because they do not want to recreate a hyperthyroid condition that can impact the heart or cause bone loss. Yet I am hearing that for a better quality of life and to stay off of antidepressants and cholesterol medications or possibly high blood pressure medications that can result from being on T4 alone where there is this issue of not being able to covert to T3 properly, is this true for all the masses of people on Synthroid? I am sure that there are many people on Synthroid post RAI or TT who never use the Internet to report problems so is the information that is being posted all over the Internet of the masses of people on T4 having major health problems due to not converting properly to T3 all true? Or is it just really a small population?

I realize that each individual is different in how they respond to a levothyroxine drug and there may be cases of patients who have problems converting T4 to T3. Yet people I talk to on the outside (post RAI), other than on the Internet, are on Synthroid and not overweight or depressed and working. I am just curious as I know in time I will be joining the population of those on a levothyroxine drug and wanted to get some input. I was also told by my endocrinologist since I am over 50, that he would not consider T3 for me. I found that comment interesting. I see him a week from today for my first post RAI blood work report.

I was extremely depressed, unmotivated, and gained 20 lbs which still have not taken off, when on Methimazole 20 months when I went drug induced hypothyroid two times. One time my TSH was 13 and the other it was 3.5. My T3 has stayed pretty much the same and in range though. I just do not want that situation recreated if possible and my endocrinologist said he wants to keep my TSH between 2-3. This is one of my reasons for concern and yet I still have to take this one step at a time.

I have searched on this topic here yet I know too there are people who are newer here and also I love to hear again input from the facilitators who have a lot of good things to share and have seen people come and go on this forum over the years.

Thank you for input….beach45

[snelsen]

#1171974

Hi Beach,
Fair warning. I might reverse T3 and T4 when I write and not notice it!
What a well written post!
Yes, I have had experience with the combo of T3 and T4. The results sounded marvelous to me (from a few anecdotal stories I heard and read.)
My endo said that his experience with his patients is that if the person felt strongly about trying it, he was willing to do it. He added that having Graves’ was such a stressful disease in all aspects, that the combination of patient desire, plus no evidence based reason that it was really harmful, that he thought it valuable that the patient “own” their experience, come to their own conclusions. He also said that he had 20+ years of his own patient population, and that only one person continued on the combination drug.
He said in many cases, there was a mild placebo effect, which patients usually acknowledged was probably the case. Simply because they were making a change, and wanted it to work.

The rest of them told him that they could not see any difference after 5 or 6 months. I am in that category, but it did not take that long. I was all excited about taking the combo, and was very happy, full of more energy than I usually had–for about a month. Then I felt no difference at all. So it was I who initiated stopping the combination, and going back to Synthroid only.

(Since I mentioned the placebo effect, there are good, evidenced based studies about that particular phenomenon. Especially with pain meds.)

His experience in his practice was similar to my experience. His caveat was that because of the bioavailability and metabolism of T3, it had to be taken twice a day, approximately 12 hours apart, for otherwise, there was a rush of T4, that dissipated rapidly. The clinical result was a feeling of mild euphoria that it was “working” followed by a crash, feeling more tired and sluggish. He said over time, the patient compliance was poor with this regimen, since it did not seem to make much difference, why do it?

Synthroid seems the best for me, but the insurance costs are increasing a lot, for the generic is available. I switched to the generic, but it seemed that I felt better on Synthroid. AND, I personally think that my own experience with this, may be a placebo effect!

In summary, I appreciate your dilemma. This will be an interesting talk with your endo next Wednesday. And you already know that there are different opinions on this issue. When you talk to your endo, maybe you can make a plan to give one of the choices a chance, see how you feel, with the symptoms that are troubling. I guess I would give Synthroid a good run first, or begin with the generic, which many people take, and see how it goes. Then, after you have gathered information which you don’t have now, you can decide to stay as you are, or try another option.

In my own experience, I already have significant osteoporosis and osteopenia, plus a cardiac issue from one of my chemo drugs for breast cancer. So since I did not notice any difference after my excitement of beginning the combo, I am back to Synthroid.

Shirley

[snelsen]

#1171975

Hi, I forgot to post this link.
http://www.medscape.com/viewarticle/722086_7
shirley

[adenure]

#1171976

Hi!

I’m still trying to be diagnosed (post partum thyroiditis or Graves) although it seems like the doctors are leaning towards Graves. Anyway… if I need to get the surgery done, that’s the route I’m choosing. I have it scheduled for June 12th.

I found this “Nature throid” and “Westhroid” online. I don’t know if it’s worth trying, but I have found a lot of positive reviews online for it. Does anyone know about this much?

http://www.nature-throid.com/nature_throid_vs_synthetic_thyroid.php

Alexis

[Bobbi]

#1171977

T3 is immediately available to the cells — and USED in the cells, regardless of whether or not it is needed at that point in time. We do convert T4 into T3 as needed. People online who say they do not convert T4 into T3 should be taken with a grain of salt. If they were not converting, they would be dead.

I took a minimal dose of T3 for a while, with my endocrinologist’s approval. I became thyrotoxic and had to stop it. By “minimal,” I mean that I was taking half of the smallest dose possible per day. It caused heart issues. Some people may be able to tolerate a minimal dose. But it is more hazardous, and probably isn’t necessary. Be very, very careful of those who suggest the supplementation of T3 in addition to T4.

I am on T4 alone, and doing wonderfully well.

[beach45]

#1171978

Hi Shirley,

Thank you for the information and compliment on my post. I did switch the T4 and T3 in the subject; thanks!

I appreciate your sharing your experiences with T3/T4.

I did read your link and it has some very valuable information.

What I am concluding from talking with three endocrinologists that they do not want to recreate a hyperthyroid condition with their patients who had gone hypothyroid post RAI or TT supplementing with T3. I had one endocrinologist who left my area who was for the T3 which I am finding in my area is unusual. It is good your endo was willing to let you try it.

I also am starting to question all this hype on the Internet about the T3 / T4 issue. For myself I like to see actual studies or statistics in writing which back up a claim, like the link you provided. Plus I find on this forum I get more realistic information on subjects.

I have to give myself time and see when I do get to the point where I need thyroid hormone (T4), if I feel better. I know it takes time also after the patient starts taking Synthroid or it’s generic to start feeling better. I do not expect miracles immediately as I’ve been on this Graves rollercoaster now for two years.

I am glad you told me to give the Synthroid a good run first as someone else told me that a while back. The people I know post RAI or TT on Synthroid or the generic, seem to be doing quite well. Not as many on certain other forums on the Internet yet I’m seeing a lot of them are possibly worse case scenario.

I personally want to be as careful as possible with what I do moving forward and to not create a problem with my heart or bones.

Thanks again for sharing!

Bobbi, thanks for sharing that information; it definitely makes a lot of sense!

I had heard that too of some who could have a hyper condition recreated taking the T3 and one medical practitioner who has treated me for other health problems and knows my medication and supplement sensitivities, feels that I will respond very well and quickly to the Synthroid; she advised me to stay away from T3.

So I very much appreciate your comment about being careful about the people who suggest the supplementation of T3 with T4. I am finding out it is a mixed bag of what I am reading on the Internet about treatment for Graves disease; why I am sticking to this site.

beach45

[Kimberly]

#1171979

Hello – Sorry to jump in late, but I have been manning a booth for the Foundation at the American Association of Clinical Endocrinologists conference in PA.

I got to sit in on a couple of presentations while the exhibit hall was closed, and one presenter spoke about T3/T4 combination therapy. The majority of studies that have been done on this issue found that there is no improvement either in thyroid hormone levels or on quality of life from switching to T3/T4 combination therapy. (In fact, some patients reported increased anxiety with the addition of T3). One exception was a small study from 1999 that did find a benefit from adding T3 therapy:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.ncbi.nlm.nih.gov/pubmed/9971866

The presenter mentioned some very interesting research from 2009 that indicated that patients with a very specific genetic type (which represents about 16% of the population) could potentially respond better to combination T3/T4 therapy:

http://www.ncbi.nlm.nih.gov/pubmed/19190113

The challenge right now is that there is not a simple test for this specific genotype — but this will likely be an area of ongoing research.

A presenter at our Boston conference noted that although he is not convinced by the research that there is any benefit to adding T3, he stated that if a patient is not feeling well after being stabilized on T4 alone, he is willing to do a trial with them to see if there is improvement.

[beach45]

#1171980

Kimberly, I really appreciate your input and sharing of studies. This helps me a great deal. Thank you for the links also.

It is good if there will be ongoing research.

I like that thought though if a person is not doing well on just T4 alone, to do the trial with adding some T3. I find the endocrinologists in my area do not like to do this especially with a person like myself over 50. Yet I have to not concern myself at this point in time until I see how well I respond to the T4. I was told by a couple of doctors (other than endocrinologists though) that a patient should give the T4 alone a try for a while first.

I also heard about caution with adding T3 due to possibly increasing anxiety, heart rate and accelerating bone loss. What I gather is that some endocrinologists are not keen on adding T3 because it could possibly recreate a hyperthyroid condition. My current endocrinologist was not too willing to discuss this T3 issue with me.

What I read recently that differs from other groups regarding the T4 vs. a T3/T4 combo is from the National Academy of Hypothyroidism. They have a different view point on this topic.

Thanks again!….beach45

[NLBatten]

#1171981

I am so very glad you posted this! I have been so confused about this myself as I joined another thyroid internet “group” for potential local support and have been overwhelmed with their emails / comments about this subject (and the other massive amount of supplements and other hormones they take). As always, Bobbi, Kimberly and Shirley you have come through for us with great explanations!

Beach45 – I thought I would give you my brief story so you won’t be disappointed if you don’t get great results right away. DX 2/21; RAI 2/24 (fast I know). 4 weeks post-RAI there was no change in TSH but T3 & T4 had come back in to normal range. Endo said wait 6 more weeks and try again. A couple of weeks after first post-RAI labs, I started feeling hypO symptoms (splitting/flaking nails, fatigue, gained 9 lbs in 1 week, muscle aches, etc.) I was panicked because I was going on vacation for a week, so I asked for another test at 3 weeks (i.e. 7 weeks post-RAI). In just those 3 weeks, my TSH jumped to 7.8 (not that high considering most people but drastic given I had been at <.008) and T3 & T4 were quite low. She started me on Synthroid (likely half of the dose I will eventually take as I am quite overweight and one of the ways they determine doseage is weight) and I was to return in 6 to 8 weeks. (You will see from some of Bobbi's posts that there is no need to test more often, as it takes times for the numbers to catch up and testing too often and then adjusting meds too often can send you on a hyper/hypo rollercoaster. ) Anyway, I am 5 1/2 weeks into my Synthroid dose and while I would like to tell you otherwise, I don't feel great and frankly still having hypo symptoms. I am very anxious to get my next labs and move on to the next higher doseage of Synthroid with the hope that will start to help. I say all that to say, be patient but listen to your body. If your labs this week show no change, don’t be discouraged. Watch for hypo symptoms but it appears that not everyone goes hypo as fast as I did. If you have symptoms consistenly before it is time for new labs, call and get new labs. When you do go on Synthroid (or other), you have to wait it out. I read somewhere it takes about 3 weeks to start feeling the effects and even then, the first dose might not be the right dose. It is a tough wait. I am under incredible stress at work right now and I hurt all over, but I am getting thru just waiting for next Monday when I can test again and start moving on to the next step. And even then, even if it is the right dose, it could be another 3 weeks until it starts helping. Reading this board and being part of this group is very helpful though because I can see there is a light at the end of the tunnel and despite what many on the internet would have you believe, you can live a normal life with this disease. Thanks to all of you who give us hope (and great advice)!

[beach45]

#1171982

NLBatten, Your welcome and I am happy for your response here!

Yes the facilitators here definitely come through always with beneficial advice and information. I hestitate on other forums because there is too much confusing information for me at times and some misinformation unfortunately also.

I appreciate your sharing your story with me. I had a miserable time on Methimazole (MMI) where my levels went hypothyroid pretty bad and I gained so much weight, was depressed and sluggish, aching all over and tired. Problem with me I’ve been tired for so long even before Graves diagnosis in 2010 that because I was told I was slightly hyperthyroid off and on for years prior, I do not know if I just never really was balanced; I experienced tiredness with both hyper and hypo. I am waiting for that hypo crash as I thought when I was drug induced hypothyroid I was in a dungeon! My internist wanted me to go on antidepressants at that time as my endo appointment was not due and it is very difficult for me to get into these endos to begin with around here, so I just said let’s please decrease my MMI dosage. Sure enough about 6 weeks later I was myself again as I’m not the depressed type in my entire 50+ years to begin with. I knew it was about thyroid levels not being balanced yet I find here my doctors don’t listen yet a different problem than what we are discussing here.

Wow that is a drastic jump. Sounds like me when I got dropped with MMI 5 mg. I was miserable when my TSH was only 3.3 and when it was 13 I did not even recognize myself. So probably why my doctor is checking me so frequently as I have a chart of all my Methimazole dosages, blood work including TSH, Free T3 and Free T4 and physical changes (even though my endo made it clear he does not go by symptoms only lab values and he is very firm about this!).

That is a good point that it takes time for levels to catch up. Yes, I’ve been on that very rollercoaster with MMI and I am prepared for anything right now post RAI. I said to my endo I know some people where post RAI it was pretty easy. He laughed and said that doesn’t happen too often.

I’m sorry to hear you are still having hypo symptoms. That made me crazy when I was very hypo and I couldn’t wait to have the effects wear off. My whole body ached so much, I was so bloated, well my hair was already dry and falling out for at least 5 years or more, and yes I notice that my nails were lousy although they were never great, and I think what bothered me the most was the weight gain and depression and feeling lethargic. Yet my endo says if he catches me at the right moment I should not have many hypo symptoms. Well I will confirm things with him this Wednesday when I see him as I am a bit anxious yet I try not to be as I am hearing this process takes a lot of time and patience.

I hope that things start going much better for you real soon. That is right I need to be patient and I don’t know if this new territory I am in will be worse than the 20 months of up and down on Methimazole, yet I’m somewhat ready. Well I guess I do not have much choice! I wish in some ways I was better regulated on the Methimazole as I know people who do just fine on it; it just did not work out for me. I hope that I can do that with my endo if I start feeling more hypo between blood testing because he says he only goes by lab values and he doesn’t want to hear about symptoms. Yet I still would call and I am going to discuss this with him Wednesday that I am concerned if I feel like I’m going hypo, can I get testing earlier! That’s right dosages can change and it can take a long while. From talking with people in I know who had RAI, a couple had no problems with hypo symptoms and got on the right amount of thyroid hormone right away when levels changed and then a couple of people had a lot of problems getting just the right dosage yet in time everything worked out just fine for them too.

I am fortunate I am not working although I wasn’t because my moods were out of control since Graves set in, 2010 and I never felt right. I actually feel better right now 3 weeks post RAI than I have in a very long time. Whether it was MMI making me feel miserable or maybe my levels are already stabilizing, I do not know. I am looking forward to balance and getting a job. I hope things get better for you soon because I cannot imagine working in a stressful job as I did for many years and dealing with all this. I do know of some it takes about 6-8 weeks to really start feeling better and my endo said that once I get on thyroid hormone, he said average is about 6 months to get stabilzed yet then again, every patient is different. Well I have to confirm this with him also.

I wish you good luck on your journey and please keep us posted.

beach45

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