[beach45 August 30, 2012 at 4:00 pm Post count: 178]

#1059326

Hello,

I have been posting off and on what has happened to me on my Graves journey;

Recently almost 4 months post RAI I crashed to hypo; I’d say in 3 weeks I went from the high end of the “in range numbers for FT3 and FT4” with an almost undetectable TSH to a now almost undetectable FT3 and FT4 with a TSH of 54 just mid August 2012.

I am now on 75 mcg of Snythroid at 164 pounds; I’m in my early 50s. Gained about 33 lbs on both Methimazole and then post RAI which the last month I’d say about 10 pounds came on me incredibly fast.

I diet and exercise diligently, know what to eat, what not to, etc., etc., had also cut back on certain foods back when I saw this additonal weight starting to come. Know to take the Synthroid 4-5 hours from calcium/iron, etc. Listened to all the tips here.

Questions are from people who experienced similar and I’ve read past postings here too which were very helpful yet like to hear from fellow post treatment Graves people of recent too and if they had similar:

1. The amount of starting Synthroid sounds about right 75 mcg? I’m told by some that the starting dosage should have been higher?

2. I am only about 1-1/2 weeks into this and I’m still very confused/fogged/not always focused. I hit a pretty bad hypo bottom and not driving now for 2 weeks. I’ve always been very sharp.

3. Is this weight thing normal as I hear some had no problems. I exercise and diet and did even more this summer post RAI to hopefully not gain more than I had back 20 months on Methimazole yet it happened anyway. Or is this possibly an age thing as I am finding some who had RAI or TT at a younger age and on T4 for a while do not have as much trouble with the weight issue? I never had weight issues in 51 years with just following a good lifestyle so this is very strange yet I know about the metabolism changes, etc.I was also an exercise fanatic most of my life and now this weight gain makes it more difficult to move!
The endocrinologist’s nurse said in about 3 months I should see it is easier to shed the weight as long as I’m consistent with a good diet and exercise plan; no problem there with me doing that.
Maybe just alter some other things in my diet, keep a diet/exercise journal.

4. Doctor seems to be pretty conservative and well said eventually I’d probably get up to 125 mcg of Synthroid.

5. What about people who talk about Armour or Nature Thyroid to start post RAI or TT as it seems like they are more alert and lose the weight easier than on T4 alone; yet then I heard of people on T4 alone for years and said that this is not necessarily true and to beware of the T3 issue. Know about potential for afib or bone loss on it if not careful, etc. I already posted on this and heard different viewpoints yet any other sharing would be welcomed.

I realize everyone’s experience is different. Does it get better as I’m very new to taking this T4 and very uncomfortable in the middle with this weight gain where I am so puffed up. My doctors do not seem too concerned right now with this yet I know some people who never shed the weight even watching their lifestyle habits on the T4 (Synthroid). For some the weight thing is not even an issue post RAI or TT as I personally know of 3 yet I know two of them smoke.

Just hoping that people can shed some light on this from their experiences and maybe this is all very “normal.” I believe in working with the Synthroid first for a while and I know the first few months to even a year can be challenging for some with dosage changes.

Just looking for some input please if you would like to share; thank you!

Confused…beach

Graves symptoms starting May 2010; confirmed diagnosis early Aug 2010
Methimazole 20 months no remission
RAI early May 2012
Confirmed hypothyroid post RAI mid-August 2012
Synthroid 75 mcg starting August 20, 2012

[adenure August 30, 2012 at 5:27 pm Post count: 491]

#1174086

Hi!

I think we’re in the same boat wondering about Armour/ Nature throid. For me it’s not weight, but headaches.

As far as a starting dose, it seems like 75 is low. From what I understand the starting dose tends to be determined be weight- 1.7 mcg of Synthroid per kg. of body weight. I was started at 100 mcg. then moved up to 112 mcg 4 weeks ago. This seems to be the right dose for me as my TSH went from 6.35 to .79 after the 112 mcg. increase after 2 weeks. I am 5′ 4″ and weigh about 118 lbs.

I’m 38, so I don’t know too much about menopause, but do you think that could be contributing to the weight issues? I’ve heard T3 (cytomel/ natural) can help with weight loss (anecdotal web stories), but I don’t know- I guess it might.

If you try Armour or Naturethroid, let me know- I’d love to hear your experience if you end up wanting to or being able to do it.

[gatorgirly August 30, 2012 at 5:40 pm Post count: 326]

#1174087

Just want to add that I also gained about 30lbs from diagnosis to now (18 months post RAI). Granted, my normal weight is only about 25lbs away, and I lost those extra 5 when I was very hyper, but it’s been a constant struggle. I track my calories, aiming for 1,200 a day including calories burned with exercise (I usually burn 350-500 during workouts), and limiting alcohol to one drink a week. I try to eat real foods – meaning as little processed crap as possible but of course I have my weaknesses.

I am still hypo and we keep upping my Synthroid dose and my endo keeps telling me the weight will come off once I’m euthyroid. I don’t know…I was there for a short period of time and only was a few pounds lighter.

I know there are a LOT of people who struggle immensely with weight after treatment. For me, being hyper honestly felt better. I was a gymnast and competitive cheerleader so being overweight has taken a huge toll on my self-esteem and social life.

[beach45 August 30, 2012 at 6:05 pm Post count: 178]

#1174088

Hello!

Thank your for your response/input.

I’m not sure yet about Armour or Nature Thyroid as it may be difficult for me to even get this. I definitely know of one doctor here who gives T3 (not sure if just Cytomel or Armour and Nature Thyroid too) and she told me that for those patients their endocrinologists in this area drop them then as they are very against the T3.

The weight thing surprised me starting out with being on Methimazole and yes I thought about the menopause issue as I knew prior to this whole thing I was very low in progesterone. My doctors feel my female hormones are all over the place too with this thyroid imbalance and give it time; plus also hopefully no sugar problems as there is some diabetes in my family and will be watching this; my endocrinologist said with post RAI will need to be more careful about sugar as some of his patients developed a diabetic condition.

I think my endocrinologist started me out slow as he is very conservative especially with over 50s and with the heart rate issues not to cause palps starting at too high a dosage.

I believe my internist would work with me if I really wanted to try Armour in future and I know an Integrative doctor who is a regular MD also who would work with me (yet I’d have to get agreement with my internist also; yet for now I want to give the Synthroid a try first.

Yes I thought about Cytomel too yet not sure about that either.

If I went to another thyroid medication other than Synthroid, it would probably be later in this year or beginning of next year. Only time will tell. I will keep you posted; I’d love to hear also if you switch and how you do!

beach

[snelsen August 30, 2012 at 6:21 pm Post count: 1909]

#1174089

Well, my 2 cents says you have pretty good management and advice from your endo and the nurse.

I realize Alexis mention kgm/mcg ratio to determine Synthroid dose, but I sure could not find any reliable reference that states this. The beginning dose is kind of a guess, really for the endo. But if I were the patient, knowing how very much I hated to be hyper, I’d want to begin at a lower dose, with the next dose being determined by labs, and how I am feeling.

When we begin on a replacement after RAI or surgery, it really is a crap shoot and a beginning guess. And unfortunately it takes such a long time to REALLY make a decision about a dose change. My endo is very reluctant to do it before 2 months. 2 months is forever,but the data is more reliable that way, perhaps saving further issues determining the dose down the road.I suppose that some endos might use weight as a beginning guess, but I’d still like to see the science and documentation behind this. I really don’t know.
Determining the “sweet spot,” as Kimberly calls it, is tedious and takes way too long to suit any of us.

1. I guess I already commented on this
2. 1 week+ is a very short period of time. Sounds like you are still pretty darn hypo. The supplement probably has not had time to kick in.

Comment, I hate hyPO as much as I hated hypER!

3. I hear a lot of people struggling with weight, including all the facilitators, I think there are some recent posts from them about this subject.
I am guessing you will drop the recent 10 lbs pretty fast. Sounds like you are doing everything right.
***Unfortunately, there are other factors that may be coinciding with weight gain, which almost always happens to us when we are premenopausal and finally hit menopause. That might be a confounding factor for you. Just guessing.
4 and 5. Your doc is doing what I think is best for you, after a longer interval of time, maybe you can lean on him for labs at 6 weeks, see where you are.
He may be careful and conservative, but you count, too, and definitely your symptoms, and how feel about this damn weight gain. I suggest calling him now, asking for the lab requisition that you will get drawn in 6 weeks, tell him how discouraged you are about the weight. It is pretty reasonable for anyone, though, at this point, to tell you that time must pass, and it really will get better, and that you will feel better. As you know, gatorgirly and many others have this fight with weight.

And, you are right, it is super frustrating and demoralizing.

Alexis mentioned the anecdotal web sites. As she knows, they tout taking thyroid hormone as a mechanism to lose weight. They are usually selling something. It’s dangerous to mess around with that.

We already know that excessive thyroid hormone can cause severe weight loss, frequently a lot of it muscle, in many of us who are hyper thyroid.

To help us the most, we need to stay on the same thyroid hormone. Maybe, after 2-4 years, when we have a LOT more information, and are still frustrated, you can ask the endo to switch to Armour or Naturthroid.
My endo said this was typical of some of us,and in every case when he has caved in, let them take cytomel, they wanted to quit in a few months, for they noticed no difference. Of course there are rare exceptions to this.
My endo said that it really needs to be taken TWICE a day, which is hard to do, because of the biochemical nature of T3.

My experience is that as I get older, it is much more challenging to maintain weight and not gain. I have to watch it all the time. Doing all the requisite things, re diet and exercise. STill have 7-10 lbs I would like to give away.
Shirley

[beach45 August 30, 2012 at 6:49 pm Post count: 178]

#1174090

Wow! A lot of really good comments;

Alexis again thank you and please keep me posted

Gatorgirly, I hear you. It sounds like we are doing similar except I no longer drink alcohol. Yes real foods and then I even go organic too! And even less carbs, fats, etc.

This is what I heard also; once I become eurothyroid, things will get better; weight is the last to go!

I hate to say I felt better hyper too. Yet that rapid heart rate was not good for me I know; I was not diagnosed properly as I look back for years so I had issues a very long time. So many tell me well when you are on the right amount of thyroid hormone for you and you give your body a chance to recover, things will get better.

You were active like me. I rollerbladed, walking, did aerobics, swimming, tennis, golfed, weight lifting, many activities up until 51 when the doctors said stop, you will have a heart attack with the Graves and stop exercising. I wondered why my heart was racing unusually fast after regular exercise that I had done for many years.

Right now both my body and mind has turned to mush. I’m glad I graduated from college right before this started over 2 years ago! LOL!

I hear you about the self esteem issue although the exterior issue with me went out the window as I emphasize to my doctor the potentials for high blood pressure, high cholesterol, sugar problems and I had a very bad case of phlebitis in my teens the only other time I gained a lot of weight yet that was from my own fault of long periods of overeating and I had since from back then at 17 to 51 maintained a very good weight with a regular diet and exercise plan. So I’ve emphasized health to my doctor as I know he doesn’t care that I went from a size 6 to a size 12!

I wish you luck with this and thanks for your input. I look forward to hearing your progress as I listen to your other posts too and thanks for sharing.

Shirley, you give excellent advice here. I know one week, well 1-1/2 weeks is too early to tell much; I just feel like I’m pregnant and I never had children and it has gotten very uncomfortable.

Yes my endo and nurse are being level headed. I am not probably because my mind is all over the place and I’m very uncomfortable and frustrated. 20 months of frustration on Methimazole and now this.

I think I was looking for a magical ride and it’s not there.

As some people I know had an easier time…

You are right my endo is taking me into consideration as doesn’t want my heart rate to go all over the place and knowing my sensitivites to medications.

I hated the fast heart rate yet I was sure a lot sharper hyper; yet this may be a transitional period too as I’ve never been really regulated even when I was on Methimazole. I do not remember normal.

Yes I read about the facilitators and the weight business. That has helped me also to read their stories and others experiences on the archives here.

Have not hit menopause yet at 53; family goes late like 55; yet major changes since RAI in May as it disappeared. Never in my entire life. Internist thinks all hormones were really stirred up. With my track record of how out of whack my body gets even with simple procedures in past, I am not surprised!

Endocrinologist specifically told me he goes by lab values only not symptoms. There is another endocrinologist I know who goes by both lab values and symptoms. I did not switch because I’ve been with the current one since Nov 2011 and he saw me through the RAI and is checking me monthly due to my sensitivies and issues; he never saw anyone respond so rapidly to minor changes in Methimazole and we could not get me regulated at all so why the RAI. He wasn’t pushing it either; I could have opted for TT yet I had a bad time with another surgery back 2009 so I decided on RAI.

It is interesting you say that. My husband has a cousin who is an anesthesiologist who had RAI 20 years ago, doing fabulous, on T4 only, weight perfect, a few years older than I as had RAI at 40 and says people she puts under all are on T4 if they have hypo whether from RAI or TT or naturally. Interesting. I have been cautioned about the T3 thing. I hear you.

That is so very true that as we age the weight thing becomes an issue anyway even if we never had a thyroid issue.

I really appreciate your response and all the responses here. Gets me thinking and just keep having patience that this too will pass and working with good doctors I’ll hopefully get to at least near where I need to be. Maybe different yet better!

Beach

[mvk August 31, 2012 at 7:26 am Post count: 33]

#1174091

Hi Beach45,

I’m with you girl. I’m so frustrated with the hypo. It is really making me miserable. My endo started me on .25 dosage of levothyroxine. Your .75 sounds really good to me right now. I’ve already drawn labs this month and will see her on Tuesday morning. I am tired, gained 5 pound literally overnight when I started taking it and I cannot get them off. Joints ache, constipated, nails went to hell, etc., etc. As I said before, I am 62 and I guess they can’t go too high with the dosage but I know I am still way hypo without seeing any lab results. My diet (which has never been better I might add) and exercise are the only things keeping me sane right now I think. I’ll report in on Tuesday after I see her. Hang in there. I am assuming from everyone’s responses that it can only get better. Have a great weekend.

mvk

[beach45 August 31, 2012 at 8:16 am Post count: 178]

#1174092

Hi MVK, Thanks for sharing; I know we are on the same schedule having RAI around the same time. It certainly has been a journey thus far and mine strung out too with all those months on Methimazole up and down (gaining like crazy!) and then prior with at least 3 years where I was not diagnosed with Graves and knew something was wrong; why further testing sometimes even of antibodies is important; many who are caught earlier fare better or some just do fare better in general even with the weight thing and others not for some reason be it severity, how long this disease was there underlying, amount of I-131, age; etc., etc. I hear all different stories and not one size fits all. I listen to people who had RAI and not a big deal; hardly gained if anything, got on Synthroid, no problems for years. Others not. I do not understand my endocrinologist who says, oh you could gain more on the Synthroid yet in time when we find your right dosage it should get easier! I know we can diet and exercise until blue in the face; or like my husbands cousin the doctor who had the RAI 20 years ago said it is “not just about diet and exercise!”..defending me to someone else who said weight watchers. It is about working with a good doctor getting the person to where they need to be with their metabolism working efficiently, plus of course the diet and exercise as yes I know all about the metabolism changing going from hyper to hypo and altering diet and the whole nine yards as I’ve researched this thing to death over 2 years. So I hear you about those things keeping sanity! My one doctor said if I can take natural diuretics like green tea, grapes, asparagus and other foods which can help with some of the bloat/water retention that comes with hypo. I’m told by many it does get better; yet for some I know years post RAI or TT it has not! Want to be more optimistic though as I’ve had the entire time yet I am losing faith with doctors too. We’ll do fine; it will be nice to keep up with how we are doing here and seeing improvements! Happy you responded and always happy to hear other’s journey’s! Thanks and you have a great weekend also!

[beach45 August 31, 2012 at 8:45 am Post count: 178]

#1174093

MVK, P.S. I meant to say also good luck Tuesday and I hope that your doctor will get you on the right dosage soon for you to feel much better; I’m finding out it is a process and like with my endocrinologist doesn’t want to put me up too high a dosage of Synthroid to make sure I don’t start having palps / racing heart! We’ll get there..in time; I was told months to a year…..beach

[beach45 August 31, 2012 at 9:34 am Post count: 178]

#1174094

Just an interesting comment I found on another site, medhelp.org that Dr. Lupo, MD and thyroid specialist said: “Sythroid starting dose for this situation (in response to a patient post RAI), could be 0.7 mcg/pound (assuming roughly normal weight for height) …unless you are 65 years of age or have heart disease. For a young, healthy patient, a full replacement dose can be used from the beginning.” Yet this is just his method as again of what he follows for his patients as we know one size does not fit all and from my experience on this journey, none of my currrent or past endocrinologists are following one standard; so just an FYI; nothing written in stone yet going by this then I’m very underdosed and I do not have history of or have heart disease…..beach

[mvk September 4, 2012 at 10:56 am Post count: 33]

#1174095

Good Morning All,

So I went to the endo this morning and thought I’d report what happened to the group. I am about 4 months post RAI now. Last month my TSH was 7.64 (above normal) and I started .025 daily dose of levothyroxine. I guess I should have realized sooner that my hypo symptoms were getting worse and I should have called the endo about it but I am the first to admit that I hate admitting defeat and feeling out of control so I did my labs last week and waited until my scheduled appointment. My TSH was 72 this time and , of course, my T4 is below normal. No wonder I have a litany of hypo symptoms now. Anyway, now up to 0.10 (4x’s as much) on the thyroid med and a better understanding that if I am feeling worse, this is not OK and I need to go get my labs and call the endo’s office that I did them. I should be feeling better soon I hope. Lesson learned. She did tell me this is kind of a guessing game now and can be like a roller coaster for a while. I did request a Vitamin D level test be drawn next labs and also got my flu shot today. She said it was no problem to get a flu shot. Also, warned me of the hyper symptoms if the dose is too high but I did assure her that I do know those symptoms for sure! Take care of yourselves everyone.

mvk

[beach45 September 4, 2012 at 3:57 pm Post count: 178]

#1174096

MVK, that is great at least you are now on a better dosage and you’ll probably feel much better in a few weeks! You sound like you have a very good doctor there working with you. It seems like for some there may be some up and down in the beginning as my endocrinologist told me; yet he wants me to sit tight for the blood work each month and not go by symptoms. So if I called him with my current hypo symptoms he’d tell me wait until it is time for my next blood work. Good you have a doctor who goes by both lab values and symptoms; I may soon be in the market for finding a doctor who goes by both which is tough around here!

Great news; thanks for sharing!…beach

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