[beach45]

in reply to: Joint/Muscle Pain – How common? #1174986

Hello,

I had joint/muscle pain on antithyroid Methimazole off and on when I took it 20 months. Joint pain really intensified if my levels were going too much toward hyperthyroid; muscle pain intensified more when my levels were going too much toward hypothyroid. My husband takes quinine for years for muscle aches due to knee surgeries causing cramping/muscle aches and then when they took the drug off the market, he now drinks the tonic water like you all are talking about. I found too that calcium/magnesium helps yet I do that with the approval of my doctor as magnesium is supposed to help with that and it’s helped my husband too.

Then I also read medical literature yet I forget where as I in 2+ years I’ve read a lot of medical information and discussed with many endos and regular doctors and naturopathic type doctors about Graves and thryoid and that post RAI also some people can have more joint pain. Funny because I’m having a pretty rough time with that myself; so I can certainly relate to joint/muscle pain and for myself I am hoping in time when these doctors of mine get my levels perfect for me, that this too shall subside; plus I plan on getting my blood work done on certain vitamins and minerals as sometimes electrolytes can be off. Plus I put on so much weight on Methimazole and then post RAI and even with a very good diet and exercise program I cannot lose (not gain, yet not lose either) so I know for my height I’m still too heavy and that probably is not helping either with my joints and muscles.

I also heard of some trying out Armour Thryoid to help yet there is that caution with the T3. I never had any of these problems prior to Graves as I was also athletic for years even up to 51. Seems not everyone has the same symptoms yet I have heard of others who had the joint/muscle problem with their thyroid disorder. Good luck with this! ….beach

[beach45]

in reply to: Graves and Menopause? #1175034

Hello,
I experienced similar and am already going into menopause post RAI 6 months now. I am 53. I had those horrible hot flashes for a while as I’ve been fighting with this Graves thing since May 2010 first on Antithyroid drugs for a while and then RAI May 2012. My TSI was high also and I probably should have been tested more thoroughly back between 2000 to 2010 as my TSH a lot of times was close to 0 yet my Free T4 was normal. I have researched and yes Graves can aggravate when women go into menopause as I had one female endocrinologist I loved who left my area said I could have definitely have issues and it is a double whammy!; plus my period went away or was light off and on when I was “hyperthyroid” and when I went seriously “hypothyroid” on Antithyroid Methimazole they were so bad I thought I was going to need a hysterectomy! I have fibroids too; I have had no period for 6 months now; my FSH was consistent with menopause and I had been gettting acupuncture for the horrible hot flashes for a while there which helped and all of a sudden on 125 mcg Generic Synthroid only for 2 months now post RAI I am no longer having hot flashes and I have not been going to acupuncture of late. So I suspect something is balancing out with me yet no blood test until later this month. Plus you say that a lot of the doctors are more concerned with diabetes as an endocrinolgoist who wrote a book on thyroid said most endocrinologists are concerned with diabetics and you have to find a “thyroid specialist” which at least are not too common here in the US or at least a doctor who specializes in thyroid. Personally I think we need more specialists in the area of thyroid and maybe in time as more younger people are developing autoimmune thyroid disorders so maybe things will change. I know for myself I am not like a lot of people who had no problems or minimal problems with this journey as it’s been quite a roller coaster ride for me pre and post RAI and I’m still struggling with weight. So yes I can very much identify with you regarding the hot flashes and menopause!….Good luck on your journey!

[beach45]

in reply to: Average mCi dose #1174794

Hello,

My endocrinologist who is also a professor at the Medical University near where I live in SC, is up on the latest as he told me average dose is 8-15 mCi. I had 15 mCi myself May 2012. I consulted with two other endocrinologists who use up to 29 mCi; for Graves, that is, so it seems that it varies some. I know in years past they used a lot less and found that some patient’s thyroid’s were not resolving well enough where people needed a second dosage; it was with the thoughts of making the patient Eurothyroid. Seems today with some endocrinologists it is a little different yet I find it varies only from myself seeing four different endocrinologists with all different approaches….beach

[beach45]

in reply to: New “old” person #1174608

Thank you Shirley; I love what you say here as that summarizes it well how this post RAI/TT thyroid hormone issue works.

What really hit me was when you said, “before Graves, our bodies did all this thinking for us.” It is not perfect science as I am realizing and we do have to rely not only on ourselves to stay healthy yet on a good doctor too. Which is where my battle is getting a doctor to really listen; getting there somewhat yet my current endo and I have this real love / hate relationship where I also know he hates to see me coming probably! Yet he has gotten me through some rough patches here and even if a very difficult doctor at times, he is very intelligent and knows this thyroid business. It would be nice if there were more “thyroid specialists” in this country.

Well yes, I started 75 mcg Synthroid August 20 as I was at the point of feeling like death of a TSH of 54. I knew it was coming yet my endocrinologist would not test me earlier than the once a month he has been doing thus far. I thought I was going to die, yet of course not, yet I felt like that and my potassium levels had gone low too.

So 75 proved to be too little so I got increased to 100 mcg; then TSH was 30 yet the FT4 was 1.08 in range (ranges .85-1.77). So we discussed increasing me somewhere from 112 – 125 mcg as my endo goes by the AACE recommendation of 1.6 mcg x kg of weight. Of course for the beginning as I know that doesn’t work later on when dosages are tweaked according to lab values and how the patient feels (latter which my endo as I mentioned does not go by!). So only on 125 mcg since September 20th; yes too short of a time yet feel just okay and the weight thing is my issue; I only have concerns over that because it made my cholesterol skyrocket and my blood pressure went a little high which I never had issues with bp in my life and my sugar is now borderline; all over night now going hypothyroid and on this Synthroid stuff. Yet I feel well let’s be patient as you said Shirley it takes time. I for one do not want to go on a bunch of medications for now newly founded problems or like trading one problem for another.

I even read on a site of an internist up north where I came from (US) who specializes in using natural thyroid hormone yet is still a regular MD and teaches at a Medical University by Rutgers University, and he even said if people are over “50” to be very careful with even thinking about using T3 due to what you talk about potential for afib and then there is that issue of bone loss over time. There are cases of people on T3 for a while where this has occurred and I do realize myself who is into natural more this is very tricky business. So I hope that the T4 alone works for me in time and that I will hopefully lose the weight as this is not a superficial thing for me at 53 as it is just for health reasons and I need to give this thing more time; because I do not want to go to just some doctor who is willing in time to give me T3 who really does not know how to dose properly.

I always find I get the best advice from people who have been living this being on thyroid hormone post RAI or TT for a very long period of time. You all put things into perspective. Wish I could go to the conference yet cannot due to circumstances yet hoping there will be videos like with 2011 conference.

That is very interesting your experiences Shirley; thanks for sharing. The fact too that you became hypo too with TSH staying low and developing issues. I hope you are feeling much better now….beach

[beach45]

in reply to: New “old” person #1174606

It is important to be our own health care advocate; I also do keep an excel spreadsheet of all my blood work results with symptoms and levels, etc.

I would love to give Armour a try some time as I am more of a believer in natural.

My issue is that my current endocrinologist only goes by lab values; he is completely against Armour as he said it is inconsistent. Against any T3 especially for over 50 year old people.

The other endocrinologist I went to one time is also against adding T3.

My internist who I will be turned over to soon by whichever endocrinologist is on a fence about Armour and said he will more likely go by what my endocrinologist recommends. I guess people cannot make a choice in some cases?

I personally do not know where I will end up as I am too new on Synthroid yet having some struggles being on it 1-1/2 months; maybe too early to tell. I just know some people do really well on Synthroid (T4) alone and some actually seem to do better with a little added T3 or a T4/T3 combo. I just believe it is good if a doctor is willing to work with the patient’s symptoms in addition to lab values and choose whatever is best for the individual patient and not dictate yet then again it is said that too much T3 can also be dangerous. I’m still very new at this thyroid hormone game post RAI.

I think it all depends on individual needs….interesting thoughts….beach

[beach45]

in reply to: New “old” person #1174603

P.S. thanks for sharing that Kimberly as I get the GDATF newsletter and I missed the part on Gail Devers….beach

[beach45]

in reply to: New “old” person #1174602

Thank you Kimberly!

I have here three links as I thought they were pretty good and find her a great inspiration.

The one with the video with mention about a Synthroid shortage it is not occurring not to worry as this was made a while back.

Hope you all enjoy!

Beach

http://www.empoweryourhealth.org/taxonomy/term/43

http://espn.go.com/olympics/summer/2012/espnw/story/_/id/8074063/2012-london-olympics-where-now-gail-devers

http://wrongdiagnosis.healthology.com/hybrid/hybrid-autodetect.aspx?content_id=3085&focus_handle=thyroid-health&brand_name=wrongdiagnosis

[beach45]

in reply to: New “old” person #1174600

Janine,

I appreciate your telling your story here; mine is somewhat similar.

I went misdiagnosed for years; then I was told it was probably just hormonal.

Like Kimberly said that the hyperthyroid symptoms can mimic other diseases/medical conditions.

Had I been diagnosed sooner, maybe I would not have been having such a rough time; on Methimazole myself 20 months, gained 25 lbs on that; no physician could get me into remission; RAI back May 2012, gained 10 more pounds, and now struggling to get on the right amount of T4 (Synthroid). Follow rigid exercise and diet for over 2 years now and still problems as my metabolism seems messed up; also going into menopause which doesn’t help; slowly getting there yet if I had been caught back in my 30s when they told me I was “slightly hyperthyroid” and done the appropriate tests back then, maybe I would not have been in this boat; I know others caught earlier and remission on antithyroid drugs or had RAI pretty much right away, minimal issues; with the horrible Graves symptoms in 2010-2012 going hyper to hypo and back to hyper again on Methimazole I was struggling to help my 85 year old mother who had two serious surgeries as I am the only family down here in SC; yet when I look back now I survived and have moderate TED which is being checked regularly and still going strong at 53. Won’t let this thing get me!

I am now overweight, high cholesterol, constant pain in my knees and legs, and having other issues yet I believe maybe once doctors get my levels right, things will get better. This is a person 2 years ago at 51 who was in better shape than some 20 year olds and never had pain when I exercised. Yet I have to exercise even with pain to keep myself as healthy as possible.

I too have fibroids and I had an ovarian cyst removed before Graves kicked in full force back May 2009.

I read that Gail Devers, Olympic gold metalist was misdiagnosed for years and had a severe case of undiagnosed hyperthyroidism. She even was part of a Congressional investigation for that very issue to prevent misdiagnosis of medical conditions which can kill many yearly. She had her Graves treated and later went on to win Olympic Gold. I did not share the link as was not sure if I should here, yet her story is all over the Internet; her part in this investigation was back in 2000; the information Kimberly shares on this site re: guidance on the treatment of hyperthyroidism is a very good thing and hopefully in time things will even improve more with more awareness and research as more people as I hear from my ob/gyn and others are developing thyroid disorders.

My eyes have been buggy for years and only one of my four endocrinologists picked up on this that I had TED.

I hope that you are doing better now and yes I agree why so difficult to diagnose this condition yet seems that things may be improving!

I always love to hear other’s journey with this disease as we are all so different!….beach

[beach45]

in reply to: Weight Gain #1174516

Mariaboo,

Your doctor sounds really good and that he will follow you closely so that you don’t have too much problem post RAI; if at all.

Just for myself, I think because I am going into menopause, my entire hormonal system is out of whack as we know the endocrine system is all tied together thyroid/female hormones. A nurse practitioner from up north where I came from who I have dealt with for years told me I have a double whammy plus she said that my Graves was most likely triggered by my going into menopause. This can happen and I have read about that also.

I was told that the weight will probably start coming off in time as the thyroid hormone does not work overnight; plus it is not a weight loss medication; just to balance our thyroid and then of course we have to watch both diet and exercise which I already do diligently.

I compared notes with some women going into the change who had RAI and they had the same exact issues with the weight.

It is neat that MVK and I are on the same timeline and can compare notes.

We are all so different and I was always the type that had problems with any medication or treatments or surgeries as I had minimal in my lifetime and I get impacted very strongly as why I was against RAI for myself and surgery was 100% out for me yet I had to accept that if I wanted to live, I needed to do something about my Graves symptoms. So many do just fine though as you can read the archives here also as maybe just takes some longer than others to get back to feeling normal.

Good luck tomorrow….beach45

[beach45]

in reply to: Weight Gain #1174511

Mariaboo,

T4 is a thyroid hormone which is Levothyroxine which Synthroid is one of them.

I was feeling terrible with Graves symptoms and undiagnosed for 4 months in 2010; then up and down not feeling well on antithyroid drug Methimazole which doctors could not get the dosing right for me; I never really felt good over those 24 months yet pockets of okay; and I’m just feeling okay now as I’m waiting on more blood testing in about 2 weeks to see where my levels are now being on Synthroid/Levothyroxine (T4) for about 40 days. That is only my story though and I feel I wasted time on antithyroid Methimazole as I never looked like I was going to achieve remission; I know people who got diagnosed, had the RAI and did just fine. Every story is different and I’ve been researching medical articles and talking with doctors all about thyroid over 2 years now.

I was already drug induced hypothyroid on Methimazole twice so I knew what to look for. Did you happen to ask your doctor? There may be information here too in the archives or in the General information portion. I felt sluggish, gained weight, bloated, fogged, confused, achy, dry skin, and clumsy. I got hit hard as I had a discussion with my doctor to test me earlier as I knew it was coming and he waited so I did not have a good time going hypothyroid July/Aug 2012. Yet there are people I know who had an easier time so you may have an okay time of it and keep in touch with your doctor as I did; he blood tested me every month post RAI instead of waiting even longer as some endocrinologists do; some do more frequently like mine. I ask my doctor(s) a lot of questions.

The nuclear doctor/techs should give you a sheet of instructions; I had a RAI Uptake the two days prior to receiving my I-131 and it was all pretty straightforward. Many people do just fine with the whole ordeal through getting onto their Synthroid.

We are all so different reading here in archives and other places and talking with people in person who had RAI and I find it depends on the severity of the Graves prior, age, other health circumstances, how many Millicuries of the I-131 the patient receives and other factors which all make a difference in how the patient does later on. I believe for myself once the doctor(s) get my thyroid hormone right, that I will start to feel much more like myself yet it is a process and for some it has been easier than for others from what I have found out.

Best of luck and please keep us posted!…beach

[beach45]

in reply to: Weight Gain #1174509

Mariaboo,

Your welcome.

My friend here who had RAI did gain back the weight lost with Graves hyperactivity yet anything which she gained after RAI, she lost in time like I mentioned. We know with the hyperthyroid situation we do lose weight without trying as I lost 10 lbs; then I gained about 15 with Methimazole and about 10 more post RAI. I just lost 5 lbs and I do not count the 10 I lost with Graves hyperactivity because that was not my realistic normal weight for the recent years. I hope to lose 20 lbs to get back to my normal weight yet it seems like the RAI also may have thrown me into menopause (I am in my early 50s) and I am sure my hormones are all over the place. I met people who had RAI and were a normal weight and looked good; we do need patience and give ourselves time to normalize also post RAI.

I actually felt pretty good post RAI; a little hyperactivity the first 3 weeks yet nothing like when my Graves was in full swing! It was close to my 4th month post RAI that I went very hypothyroid and I recognized the symptoms. I’m still battling with that like I mentioned with the weight and bad muscle and joint pain which I am hoping with being on my T4 for a while that I will feel better in time. As time goes on, I see overall that things are turning out well yet also taking time. Worst part immediately post RAI was for me to isolate 2-3 days. Please keep us posted and best of luck this Wednesday!

[beach45]

in reply to: Weight Gain #1174506

Weight gain seems to be an individualized thing as I read the archives here on this forum. I got a lot of good information searching past posts here.

Plus I know people who gained minimal post RAI and TT and lost it once made eurothyroid on Synthroid post RAI or TT in time; that is, with decent diet and exercise too. I also know people who still struggle with weight both post RAI and TT as levels matter, how we take care of ourselves matter and working with a good doctor matters.

For myself I had RAI 5 months ago; I’m currently on Synthroid 125 mcg for 10 days; total 40 days as I started on 75 mcg and then 100 mcg yet 10 days ago endocirnologist saw the need to increase me to 125 mcg. I struggle with weight gain; I gained a ton on Methimazole, antithyroid first being on it 20 months and being drug induced hypothyroid two times; then I gained another additional 10 lbs after RAI; my endocrinologist told me this is average weight gain; yet doesn’t hold for everyone; yes hypothyroid will slow our metabolism yet I know of those who after time do maintain their weight and I know a woman living by me who had RAI in her 30s seven years ago and told me the weight she gained post RAI came off within a year once they got her Synthroid dosage right. I am also going into menopause which does not necessarily help my situation and all my weight is in the middle and I expect a lot of it is water retention; and my sugar is slightly high as I had testing done. Yet I believe in time and effort and working with a good doctor is what will help me get back to a somewhat normal weight.

I had to not worry so much about weight as that was a fear of mine prior to RAI and I chose not to do TT; I could have had a heart attack with the Graves and antithyroid was not getting me under control so now I will work best over time to get back to where I need; my objective was to get healthy and this is definitely a process; only thing with TT what I hear is that you will get on the right amount of Synthroid sooner than with RAI which is definitely an interesting journey for me yet not all as my husband has a cousin, a doctor who had RAI 20 years ago, went hypothyroid in a year, never gained a significant amount of weight and did not have similar to what I am going through and at 60 now looks great no other problems. We are all so different yet I had to focus on first getting Graves under control; now I’m working the weight issue.

Good luck with whatever you choose as there are many here on this forum who have very good information, expereince and comments….beach

[beach45]

in reply to: Hypo activity post RAI #1174361

MVK,

I thank you very much for sharing this as I thought it was not really happening to me; I have very similar; yesterday I was in so much pain in my lower legs and feet that I thought I’m going to end up as a criple. Yet I realize it is levels and all I keep hearing from people who had RAI that it does get better once you get balanced; some even say even after balancing it takes some time to feel more normal. It certainly is a process! My doctor and I had discussions on whether to put me on 112 mcg or 125 mcg yet then he said okay we’ll try the 125 yet if it looks like I’m going too hyperthyroid again in a month, then down to 112 mcg. He told me originally it can sometimes take a year to normalize for some, that is; then I talked with people where it took almost 2 years to normalize. People I know who had RAI said why is your doctor putting you on only 75 mcg? I felt fine to start then I crashed. I then went on 100 mcg yet then I started feeling yucky again like I have this spurt of energy to start then it goes downhill fast. I don’t even like to think of weight as I listen to people who say I had no problems with weight yet I sure the heck have problems myself and it all started for me on MMI prior to months. I never had any weight problem even after quitting smoking 9 years ago and I diet and exercise too as I do more than some people who are probably in best of health! Seems like we all have unique experiences with this; you and I sound very similar. I do hope that you will start feeling much better soon as I hear you! Sounds like you are working with a good doctor! Take care!

[beach45]

in reply to: Hypo activity post RAI #1174359

My endocrinologist is a professor at a pretty large Medical University who goes by lab values only and he makes that clear; he tries to bring the person up to where they need to be pretty quickly post RAI yet then moving forward he waits 2 or 3 months to see how the person is responding. He goes by the American Association of Endocrinologists guidelines which gives the information on dosing by weight. He also had a TT himself. Seems that some doctors do things differently as I’ve had consulted with 4 different endocrinologists in my area and they are not all on the same page. What I have heard from most being treated is that 6 to 8 weeks is about average of in between testing as I had this same when I was on Methimazole myself 20 months and I know that it takes that long at least for me to see significant changes. This is a slow process and no cannot be rushed. Plus it is better in my opinion if the patient can be treated based on both lab values and symptoms.

[beach45]

in reply to: Hypo activity post RAI #1174354

Hello MVK,

Sorry to hear your struggles; I had RAI too about 5 months ago May 3, 2012; went hypothyroid around August 20, TSH was 54, FT4 0.22 and FT3 just about non-existent; went on 75 mcg Synthroid; horrible; went on 100 mcg Synthroid and TSH is 30 yet FT4 is now in range 1.08 and just yesterday went on 125 mcg now Levothyroxine; I cannot shake off any weight as I was already heavy from 20 months on antithyroid MMI. Well okay I lost 5 lbs yet I blew up especially in my stomach area; now I am having very bad lower leg pain, muscle cramps, pain in my feet which I am guessing is all associated; what my endo told me this past Wednesday it takes time; cholesterol went sky high; hanging in there as seems like a process and for some more than for others! You will get there with the careful monitoring of your endocrinologist and in time as my doctors tell me it takes a while to get to where we need to be post RAI. For me I am getting a little impatient as unfortunately I do not feel well; my endocrinologist said he doses me based on 1.6 mcg per kg of weight; yet Synthroid literature says 1.7 mcg per kg of weight for the T4 dosing. Good luck with all this! beach

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