[beach45 July 23, 2012 at 6:36 pm Post count: 178]

#1059225

I am now at my 3 months post RAI and still not eurothyroid or hypothyroid.
I realize that not everyone has the same experience with Graves whether it be with ATDs, RAI or TT. I just seem to be having a difficult time or maybe this is normal.

I just got back 11 week post RAI blood work results. I’m in my 12th week now.
All of my post RAI blood work results so far:

Week 3: Free T4 2.95; Free T3 7.1; TSH 0.005

Week 7: Free T4 2.53; Free T3 6.2; TSH 0.005

Week 11: Free T4 1.76; Free T3 4.2; TSH 0.005

Free T4 Reference Interval (0.82-1.77)
Free T3 Reference Interval (2.0-4.2)
TSH Reference Interval (0.450-4.500)

What I gather that this is all very normal and that I am headed in the right direction?

I do know from reading here and elsewhere that TSH lags behind and at some point will catch up as I also so when TSH levels have been on a cruise around the world since this Graves thing started over 2 years ago and most of that time on Methimazole.

I do not exactly know what I am right now, subclinical hyper or just normal.

I do not feel right though since this started as I had maybe three weeks post RAI that I felt okay; my eyes are starting to bother me more and my weight is increasing even with diet and exercise and actually no changes in my diet and exercise. I know that post RAI it is wise to really watch food intake.

I also had bad experiences with weight gain on Methimazole when I was drug induced hypothyroid and with lots of effort still never lost the weight that I gained; even when I went back to hyperthyroid. It is almost like something crazy happened to my metabolism and it never reset itself. I do hear of people who have had struggles with weight post RAI or TT and a lot of people who were on Methimazole for long periods of time.

I am hoping that once I get to a point where I do go hypothyroid, that once on Synthroid, it will be easier to maintain or lose a little weight, of course with being diligent with diet and exercise too.

I am actually feeling a cross between hyperthyroid and hypothyroid symptoms. My endocrinologist told me that the symptoms will change before the lab values do.

I also read in a book I have “The Thyroid Solution” by Ridha Arem, who is also a doctor listed on the physician registery on this site, she talks about rebound weight gain that some may experience after the hyperthyroidism treatment(s).

“She mentions that weight gain and symptoms that patients can experience are symptoms of growth hormone deficiency.
That caloric intake has to be lowered as the excess thyroid hormone initially may have disturbed the appetite center; thus the appetite may still be increased;
Muscle needs to be increased by exercise and physical activity that aims at building up the muscle mass that was lost during hyperthyroidsim and also will enhance metaolism to help prevent weight gain post treatment;
The hyperthyroid conditon promotes a depletion of antioxidants, which in turn, will allow free radicals build-up that will increase inflammation of fat tissue. This results in the slowing of metabolism and the worsening of insulin resistance.” This is all mentioned on pages 128 and 129 of the book mentioned above.

Well the bottom line is to make sure that a good diet and exercise program is implemented post RAI and to keep the thyroid well regulated which of course having to work with the doctor on this.

Yet easier said then done and it just seems some people have an easier time yet maybe I am not correct in my assumption.

I am starting to get impatient post RAI that it seems things are not going along as quickly as possible and wishing I was already going on T4.

I have already checked some stories from the past regarding weight gain and post RAI experiences, yet I would like to hear from some others who may not have shared of recent or have more to share.

I also think that maybe I am on the right course and that it is just a time and patience thing as I am again getting very uncomfortable where I am getting bloated again just like when I was drug induced hypothyroid in Winter 2011 and thinking that a person can go hypothyroid all of a sudden (like in a week?) post RAI? Yet I still have some hyperthyroid symptoms!

I appreciate hearing from some others and their experiences and thanks for listening!

[gatorgirly July 24, 2012 at 6:14 am Post count: 326]

#1173125

It took me six full months to go hypo, and I think it came on gradually more in symptoms than in bloodwork. I had labs drawn every two weeks because my case was a little more severe than most, and they always showed hyper, hyper, hyper, dropping very slowly but never enough. I had RAI in February 2011 and by May I started to pack on the pounds, get very heavy periods, and feel very tired all the time. In mid-July 2011, my eyes flared up one morning to the point that I called out of work because I looked like a freak. One was swollen shut, the other was red and protruded. After a few different appointments, I was finally diagnosed with TED and started a heavy round of prednisone. The same week I was diagnosed, my bloodwork showed I was hypo. I started Synthroid right away, first at 125mcg. I got hyper, dropped to 100mcg. Still slightly hyper, dropped to 75mcg. By now it’s Christmas, I finally finished six months of prednisone and my eyes are in the cold phase but still drastically different than pre-TED. Still slightly hyper in February 2012 when I moved from FL to MA, so my endo had me alternative 50/75mcg every other day. I didn’t get labs again until May when my new insurance kicked in. What do you know, I’m hypo again. So new endo upped my dose to 75mcg. As of last Friday, still hypo (TSH 14) so we upped it to 88mcg which I picked up this morning and will start tomorrow. He confirmed there is no thyroid tissue left 18 months post-RAI, yet we can’t get me settled on the right dose. Oy!

I also feel the cross between symptoms, and unfortunately, new endo told me it’s not thyroid-related. He said to schedule an appointment with a cardiologist to discuss the palpitations. I have been on the beta blocker since February 2010 and it’s messing with my cholesterol and just not something I want to be on forever. There is no endocrine reason for me to still need it, yet if I skip a dose, I’m laying on the floor in a heap of sweat with a pounding heart. I also have no heat tolerance whatsoever, and I think that might be related to the heart rate.

As for weight gain, I’m sure the prednisone didn’t help but I finished that in October and I still have not lost an ounce despite a clean diet (very little processed foods), minimal alcohol intake (I drink a glass of wine maybe three nights a week), and lots of exercise – both cardio and strength – and yoga and meditation. I’m at wits end, and yes I’m still hypo, but I haven’t always been, yet my weight has never come down since about four months after RAI. When diagnosed, I had dropped from my normal 140 to 128. Now I am at 160 and it is NOT muscle (again, despite exercise). My next step is to see a nutritionist because something isn’t adding up.

Kimberly has mentioned that our metabolisms can reset with Graves and that sucks because I was always petite but as a gymnast, also muscular with so much strength and endurance. Now I struggle to lift my own weight in a crunch and run for more than a few minutes. I am also going to ask my endo about T4, but I think first, we need to get me euthyroid and see if that helps at all.

It’s a long journey, but hopefully in a few months you will feel better physically and about your body. Has your endo mentioned the possible need for another dose of RAI? Mine did for weeks until, thank goodness, the first dose finally kicked in.

Also, I don’t think anyone goes hypo a week after RAI…? I think Bobbi or another facilitator has mentioned the half-life or something else about how long it takes to flush out the I-131 as well as the thyroid hormone.

[mvk July 24, 2012 at 7:43 am Post count: 33]

#1173126

Hi Beach45,

We are on the same timeline I think. I had RAI on 4/23/12. I’m going to the endo tomorrow morning at 7:30 so I’ll let you know how it goes then and my latest labs. If I were guessing, I’d said a little better but slow progress on my TSH. March 0.02, May 0.01 and June 0.06. FT4 March 3.6, May 2.1 and June 1.1. I had another draw last week and will let you know tomorrow. I feel pretty good most of the time but just last Sunday had a lot of muscle pain in my thighs and slight tremor in my right hand. What was that???? I am trying very hard to eat very good. I think my weight is fairly stable (up a couple, down a couple) but I’m really working hard at that issue. Back to exercise and I’m taking it slow and it feels great!

mvk

[beach45 July 24, 2012 at 2:58 pm Post count: 178]

#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

[jhinnevada July 24, 2012 at 10:08 pm Post count: 5]

#1173128

Hi there,
I’m so glad I read the forum tonight. S/p RAI x 4 weeks, and feeling a bit sorry for my swollen self. Your posts give me encouragement and a gentle reminder that I must be more diligent with my diet. Have put back 14 lbs since March and feeling out of control. Will repeat lab next week and see Endo in August . Thank you for sharing your tips. I needed to read this tonight.

[mvk July 25, 2012 at 9:42 am Post count: 33]

#1173129

Good Morning,

Well I went to the endo this morning and now I am going to start thyroid medication. My T4 is 5.1 (norm 4.5-12.0) and my thyroxine free direct is 0.9 (norm 0.8-1. but the surprise was my TSH is now 7.74 (norm 0.40-4.50). Last month it was 0.06. She doesn’t want it to go crazy so I am starting on a low dose .25 mg and will be monitored from there. She told me it usually takes 4-6 weeks for it to work so I will do labs and see her in a month again. Everything else seemed to check out fine with her. New step for me in this disease process. I guess I was a little surprised it happened so quickly as things seemed so slow since the RAI treatment in April. I gained a couple of pounds this last month as diligently as I am trying to watch my diet and now exercise. I will even try harder this next month. I feel pretty good overall I can’t complain. I know I feel a lot better than I did when I was hyper -that is for sure! Thanks you to everyone for the support and help. This forum is the best resource for me and believe me I looked at a lot of information in the past 5 months since my diagnosis. I’ll be back to let you know how the thyroid meds are going for me.

mvk

[beach45 July 25, 2012 at 10:51 am Post count: 178]

#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

[gatorgirly July 25, 2012 at 12:07 pm Post count: 326]

#1173131

Hi beach,

The term is “euthyroid” and my endocrinologist, against most guidelines, really tried to get me to euthyroid via RAI. I got a small dose since my uptake was so high (something like 89%) but also because he wanted to try and kill off only enough thyroid to be euthyroid instead of hypo. Of course, he failed, and for a while we worried I would need another round of RAI. It was not medically irresponsible of him, but he really was trying to prevent me from being on Synthroid forever. This almost never works and the thyroid can regenerate and even start working even harder, thus causing hyperthyroidism again. I hope for your sake you achieve euthyroid without needing replacement hormone but I understand this is highly unlikely. As they say, hypOthyroidism is much easier to manage than hypERthyroidism. One pill a day is pretty easy even if you cannot get stable on a dose like me.

Also, I totally know what you mean. I finally told my co-workers about my Graves today. One co-worker’s wife has lyme disease – so bad she can’t work – and she can’t find any sort of online support group that is anything like this one. He said all she can find are ones where people complain and recommend all sorts of nonphysician-approved treatment alternatives…scary!

[Carito71 July 25, 2012 at 1:17 pm Post count: 333]

#1173132

Hello!

I’ve read all of your comments. Very interesting. I’m currently on the Methimazole 30mg/day. I’m on my 6th wk of treatment.

I have a quick question. I noticed you talked about taking T3, T4 but being controversial or something like that? May I ask why? Is it actually T3/T4 or do they call it something else? What is the Rx name? I’m asking b/c a friend on my husband told us the other day that he has been diagnosed hypo and has been started on T3 and T4. He couldn’t tell us more b/c he is very new at it but told us that it was not synthroid … ????

Thank you for any information on this.

Caro

[beach45 July 25, 2012 at 2:28 pm Post count: 178]

#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

[gatorgirly July 26, 2012 at 6:11 am Post count: 326]

#1173134

I just want to add that even though my endocrinologist’s goal was euthyroid and we missed that mark, my new endocrinologist (I moved) has confirmed there is no remaining thyroid tissue, so fortunately almost no chance of the thyroid regenerating. My first endo acknowledged the research and guidelines and said he doesn’t attempt euthyroid with other patients, but I was so sick that he just didn’t want to see me on the other end of the thyroid spectrum feeling just as sick.

I’m glad you bring up Cytomel/T3. I plan on asking about this at my next endo appointment (goodness knows when now that I have 348 pre-op appointments with all sorts of doctors).

[brrakes July 26, 2012 at 7:28 am Post count: 7]

#1173135

I am about 9 weeks post RAI (was done May 25). I didn’t really feel any big changes until this week, although my hair has been falling out quite a bit. From how I’m feeling, I’d say I’m going hypO (more tired, muscle cramps, lower heartrate, freezing all the time, weight gain, etc.). I had labs done last week, but I don’t have the numbers. I called him to discuss the results, because I have been feeling so awful. He told me is was alright to start Synthroid now, even though he had anticipated I’d start later in August. It seems like RAI is working quickly for me.

Also, I was only on Methimazole for about 6 weeks before RAI.

That’s my story so far!

[beach45 July 26, 2012 at 3:22 pm Post count: 178]

#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

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