[beach45]

in reply to: how long till brain is back? #1172001

Catstuart, I can relate to all that you are feeling being on Methimazole myself 20 months. I am actually feeling a bit more clear minded just 3-1/2 weeks post RAI and about 5 weeks being off of Methimazole. I had very extreme mood swings, anger, anxiety, depression and fog, loss of memory and yet I do not know if this was the medication, my levels changing too rapidly with dosage changes, or the fact I am getting closer to menopause. That female endocrinologist I had said I have a double whammy, Graves and getting close to menopause! None of my male endocrinologists will say this. My ob/gyn said get my thyroid fixed first and then see if it is female hormones. I also know of people who do very well on Methimazole and stay on a low dosage to maintain levels for years. It just was not a good thing for myself. Whether it was the drug or possibly stirred things up with my existing imbalances of female hormones due to the stage of life I am in, I will never know. I do not think all the doctors will know either as each individual is unique. Methimazole was not working well for me yet I do believe that if our levels balance out that symptoms will improve in time. I never really got to a point where it held long enough. I had maybe a couple weeks here and there which I could consider normal, or feeling myself again. There are people though where the feeling of balance stays that way and I think the key here is working with a good doctor who will stay on top of your levels so you don’t swing too hypo or too hyper on Methimazole. I was on a wild ride and did not sometimes have the best monitoring and since we are limited to good endocrinologists in my area, it was difficult to find someone to do testing more frequently. I have that now even though my endo is not the most compassionate he does know what to do with levels and it is good that I found him last Fall 2011. So as long as you stay on top of things and I found myself journaling my symptoms and I have an excell spreadsheet of all my MMI dosages, TSH, Free T4, Free T3 levels, and my symptoms which I gave to all my doctors so they could get a clear picture. This was done per the medical advice of another medical professional I am seeing. Plus if you can stay with the same doctor, one who will work with you, it is best only going by my own experience of having 3 endos and an internist helping me along this journey. In time, I am sure it will get better for you and for me that was staying on top of things and trying to communicate well with my doctors which was not always easy yet I learned as time went on how to better get across to them. It takes time and patience what I learned from Graves. Good luck!… beach 45

Diagnosed – Aug 2010
MMI – 20 months (5-20 mg per day)
RAI – May 2012
TED – Moderate; inactive

[beach45]

in reply to: weird eye sensations should I worry? #1172022

Catstuart, your welcome! You bring up good points about the doctors. I see it as I do want them to be good at what they do and the compassion thing is an added extra; because if just compassionate yet not the best at what they do I don’t want that either. Yet for patient healing it is good if there is a good mix of expert in the field and compassion. This is what I strive for and I wish that female endocrinologist had never left my area! I’m going to hang in there with this and not sure yet if I will move to another endo because for now post RAI I’d like to follow through a bit with my current endo. I want to give things a chance and I can at times be a bit impatient with getting to where I want to be and being on MMI for 20 months has taught me a great lesson in patience so far.
I hope that it all works out well for you with your eye situation as I know this thing can get frustrating and it sounds like you have a very good eye doctor too! Take care….beach45

[beach45]

in reply to: Controversy over T4 vs. a T3 / T4 combo #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

[beach45]

in reply to: Post RAI or TT experiences with TSH, Free T3 and Free T4 Levels / Advice Please Doctor Visit soon #1172063

I definitely need to take things one day at a time. It has been difficult ever since diagnosis of this disease and the up and down for months on Methimazole and I am on my 3rd endocrinologist since the one I liked left my area. I have not been having a very good time yet who does with this disease?

I realize that I am worrying about things that may never happen and it is good to hear this from you Bobbi; someone who has a lot of experience with this thyroid business for years post RAI. I like this quoite: “Do not anticipate trouble, or worry about what may never happen. Keep in the sunlight.” ~ Benjamin Franklin.

I read a lot of negativity about people on forums having problems post RAI or TT or even being on Methimazole and even some past posts on this forum. I do feel bad for people who have been or had been experiencing problems. I know too there are people I know personally who had RAI and have been put on thyroid hormone and living productive lives without much trouble.

I look at my own blood work when on Methimazole and it seemed that the TSH lagged behind the Free T4 and Free T3 levels. I was very hypothyroid on MMI once with very low Free T4 and yet my TSH was 1.1; then I reduced dosage 5 mg and my TSH went all the way up to 13 in 3 weeks time. I only know from past blood work prior to Graves when my TSH was steady at 2.5 I felt pretty good.

It is good to hear Bobbi that you are not having problems with weight. I know that I hear some do; some do not; I have two friends here who are normal weight post RAI and one who had RAI 30 years ago has struggled for years with weight.
She also had a much lower dosage of the I-131 than I did which I do not know if that matters.

I thank you for sharing your experiences. I always love to hear positive outcomes and I realize that on most forums, we will hear more from those who are having problems as the purpose of the forums in the first place.

I will try not to project about negative outcomes and think positive moving forward. One day at a time!

beach45

[beach45]

in reply to: weird eye sensations should I worry? #1172018

I have taken fish oil for years for other issues; I take flax on top of my cereal; for me I would only take the selenium as a supplement if I told my doctor and he approved; there is some already in my multivitamin. I have a sister who is a higher up at the FDA and says be careful with supplements as they are not regulated by the FDA. My doctor wants to know any time I take any new supplement and yes I heard about the selenium supplementation many times for eyes….guidelines here posted by Kimberly caution about “alternative therapies.”…beach45

[beach45]

in reply to: weird eye sensations should I worry? #1172016

Catstuart,

I am sorry you are going through this and hoping moving forward you get the best care by doctors to watch this situation.

I had TED symptoms for about 3 years off and on prior to Graves coming out yet I did not know it was TED. I finally went to a thyroid eye doctor who specializes in TED and he said I have moderate TED; his Physician Assistant (PA) did extensive testing and He examined me carefully. He sees this often every single day. The PA told me since I seemed concerned, to stay on a low dose of Methimazole if I can. Yet the thyroid eye doctor said even with my moderate TED to go ahead with the RAI and that I did not need a steriod prior to RAI to protect my eyes. He was not sympathetic, just acted like this is routine and that if necessary surgery can be done later on. I found out later he is one of the best in the country. I use drops and was told use them regularly because that is so important. To keep my head elevated at nighttime. I do some natural stuff too as far as supplements yet I will not discuss this here and my doctor is okay with it.

I am finding post RAI that my symptoms are not better as far as my eyes. I still have dryness, burning, red eye, had protrusion for years anyway, itchy and very sensitive to lights especially at night. I wear sunglasses all the time even inside at the mall! I follow up with my thryoid eye doctor in about 3 weeks from now.

I am sorry that doctor is not sympathetic and I found overall with this Graves business I am not getting much sympathy the last 2 years and only one endocrinologist who after 6 months left my State. As we know the eyes are very important and if things change physically it can also have psychological impacts on the person.

I have concerns too following my doctors’ advice regarding my eyes as I’m still too new post RAI to know if there will be more problems down the road. I do know that my thyroid eye doctor said that there is an active and inactive phase for TED and that I was not in the active phase. Yet we also have to be our own health care advocates and make sure that we are doing what is right for ourselves to protect our own health. Doctors are providing a service to us not the other way around.

I hope things get better for you with these doctors.

I like what Bobbi said about the Serenity Prayer as since getting this Graves/TED I say it very often and it does help.

Kells1 has some great lists there regarding TED symptoms and the TED checklist.

Best of luck moving forward!…beach45

[beach45]

in reply to: Thyroid Demopathy / Pretibial Myxedema / Elephantitis #1171995

Thank you for the response Bobbi!

I needed to confirm things here because I get very disturbed when I hear on other Internet groups when erroneous information is being given out about Graves disease; especially when newly diagnosed people are reading this information. I have listened to some people who have Graves and are on ATDs on the Internet who are trying to scare others who have decided to or had done RAI or TT. I believe it is a personal choice and patients decide through being guided by their endocrinologist which is the best treatment option based on their personal circumstances or severity of the disease. I was given the option to stay on ATDs for a long while and it just did not work out well for me. I opted for RAI although TT was also an option given to me by my endocrinologist.

I find there is a lot of misinformation being discussed on different forums on the Internet, why I prefer this site as you and the other facilitators give out very good, solid information from reliable sources and also share some very positive personal experiences. I learned a long time ago to disregard the negativity on the Internet as I believe many have decided upon RAI or TT to treat their Graves and have had very good outcomes.

I needed to hear also that keeping our thyroids does not guarantee that we will not develop pretibial myxedema or TED.
For me, the treatment RAI seems to have a very bad reputation and I hear an awful lot of people saying they develop so many problems post RAI such as those saying that people develop pretibial myxedema.

Thanks again for the very detailed, informative response….beach45

[beach45]

in reply to: Controversy over T4 vs. a T3 / T4 combo #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

[beach45]

in reply to: One month Post RAI #1171951

Hello,
I am almost 3 weeks post RAI and I see my endocrinologist next Wed. I have blood work this week as my endocrinologist wants to start with blood work every 3 weeks post RAI. I ask him what are the levels he keeps patients at post RAI such as TSH, Free T3 and Free T4. I already know he wants to keep my TSH between 2-3 although I know some endos who prefer between 1-2; also depends on the patient. I already asked him average time people go on thyroid hormone (T4)which he said 6 months; some sooner, some later. I will ask him the frequency of patients having to take RAI again. I was not happy when a friend who is having TT instead of RAI said her surgeon’s nurse who has 20 years seeing TTs performed said there are people who come to them who had RAI 2, 3,4 and 5 times.

My endo goes by numbers only not symptoms. I had the shaking and fast heart rate (over 100 bpm resting) and right hand tremor too although no beta blocker and my heart rate has stablized in the high 70s / low 80s since this past weekend. Energy level is terrible; no more sleep problems right now though. No weight loss or gain since RAI as I gained 20 lbs being on Methimazole 20 months. My endo is connected with a Medical University and seems up to date on things. I find lots of patience needed as two people I know took 1 year before they got balanced post RAI yet everyone is different.

Good luck!

beach45

[beach45]

in reply to: Ovarian Cysts / Thyroid Imbalance Link? #1171908

Kimberly, thanks for sharing that; it is very interesting. I did speak to a couple of women recently who have Graves and also had ovarian cysts; both of which resolved when the thyroid was balanced; one post RAI. Coincidence; I do not know. Well we know that thyroid and ovaries are both part of the endocrine system. I know for myself my hormones have been all over the place since diagnosis back in 2010; so I look forward to having some balance soon post RAI since I believe it will be better for my entire body overall.

[beach45]

in reply to: Why is RAI so controversial on the internet? #1171857

Catstuart, thanks and I’m sorry you are feeling foggy.

I hope to post every now and then my post RAI progress as I’m very new at the RAI game right now yet so far so good; some joint issues and rapid heart once in a while and headache yet I give things a lot of time as for me this disease takes a lot of time and patience yet so many get there and then get on with their lives.

Take care….beach45

[beach45]

in reply to: HELP: Could it be a misktake???!!!….. #1171928

It sounds like that an increase to 5 mg a day may be too much yet you will have to discuss with your doctor. I learned when I went very drug induced hypothyroid on Methimazole (MMI) over a year ago, that I speak up to my doctors when symptoms are worse. I had the exact same symptoms that you had when hypo. Yet Free T3 and Free T4 have to be used as indicators also because TSH can lag behind them and I know this for a fact seeing it for myself. I was very drug induced hypothyroid a year ago on MMI as per my Free T4 not my TSH; the TSH was 1.1. About 2 weeks later my TSH was taken because of a minor surgical procedure and my TSH was 13. It took a while to drop with a dosage decrease. I also had a TSH once of 3.3 and I had the symptoms you describe except not as bad as when my TSH as 13. I ask my endocrinologist now that I had RAI where he intends to keep my TSH and he said between 2-3. For Graves patients, I cannot say yet TSH 3.9 is high for some and some of the doctors are using older lab values of approximately 0.5-5. Which anything from TSH 3-5 can be considered subclinical hypothyroid yet there is controversy still over this and it depends on who you talk to. I also have another doctor (not an endocrinologist though) tell me anything over TSH 3 is hypothyroid. There are a lot of opinions out there yet hopefully your doctor will go by your symptoms too and not just lab values; mine does not though. Yet being that he is a professor too at a Medical University by me he knows what the latest TSH lab values should be as per the AACE. Like Kimberly said there is document posted. What I do, is I bring good, solid medical journals and information from such places as AACE and the ATA to back myself up when I discuss my health care with my doctors in case we get into a “discussion.” We have to be our own health care advocates and it is imporant that a patient has a good rapport with their endocrinologist or whatever doctor treating their Graves disease because that patient will be with this doctor for a long while. Plus I agree with Bobbi, make sure they did mean TSH and not TSG. Best of luck!

[beach45]

in reply to: Ovarian Cysts / Thyroid Imbalance Link? #1171906

Shirley, I hear what you are saying. I am not thrilled about having the right ovary now taken out too being that I do not have the left and the possibility of having to go on hormones for menopausal symptoms since I have not gone through menopause yet at 53.

I also though knew from research that there is a greater risk of Ovarian Cancer with people who have Graves disease. I found this not to scare anyone as I only post since they mention a medical journal:
“The March 2000 issue of the medical journal “Epidemiology” indicates that a woman with hyperthyroidism has an 80 percent higher risk of developing ovarian cancer. A thyroid problem may cause certain conditions in which the ovaries become inflamed. This increases the chance for cancerous cells to grow.” Actually I have that article in case anyone is interested as I wasn’t sure if it was okay to post here.

I appreciate too your sharing about the sneakiness of the ovarian cancer as you remind me of this as I remember reading this prior to having my left ovary out with a huge cyst as they though it was cancerous and thank God it was not at the time.

Helen… Wow so you had the RAI same day as me. Good to hear you are doing okay. I’m doing pretty okay. I do some natural stuff for the heart rate only because I have been dealing with a holistic nurse practitioner for many years yet I would not do that on my own. I asked my doctor for a beta blocker yet he said since I was on Methimazole 20 months prior to RAI that there was no need for it. Well my internist would have given me a beta blocker if I had a consistent heart rate of over 100 bpm and right now I’m not taking anything at all and I feel okay; heart rate 80 bpm resting. I almost am starting to feel like I’m going the other way already because I experienced hypothyroid two times on Methimazole and so very sluggish, depressed and heavy (which I have still not lost that weight). I’m also extremely sensitive to medications and treatments.

I had extreme pelvic pain back in 2009 when I had that huge complex cyst on my left ovary and waited over a year for surgery as I was finishing up college then at 50. I was “slightly hyperthyroid” back then yet no doctor did further testing of my thyroid back in 2007-2008 and I often wonder if there is a connection as someone said that since thyroid and ovaries are both part of the endocrine system, that there may be a linkage (?) All I know is that I have no symptoms this time around yet my cycles have been all over the place for two years and I am sure that is not helping my situation and I do not want to go on hormones to regulate because I feel the blood clot situation due to family history is valid reason not to. So I agree from what I experienced with my hormones being completely out of whack since all this Graves thing started with me back in May 2010, that it’s throwing female hormones off too. The book I read “The Thyroid Solution” by Ridha Arem, M.D., talks about the mind/body connection with Graves/thyroid imbalances and talks about the depression and anxiety, bi-polar and that it is very important to be balanced. My therapist has charted me with my ups and downs since this started as she would a person who has bi-polar as she says the autoimmune problem can mimic this. Well if we work with a good doctor and get balanced we should be fine as like with myself time will tell. I know though when my TSH was close to 13 on Methimazole I felt so depressed and down in the dungeon that I did not know who I was and I realized it was the thyroid and for me anything over TSH of 2.5 I’m in the pitts. I am not a depressed type my entire life. My endocrinologist is going to try to keep my TSH between 2-3 once I go hypo yet I know another endocrinologist who prefers to keep patients closer to TSH of 1. My theory with all this is to keep the patient at the best levels possible for that individual patient to be better balanced overall as thryoid effects both body and mind. Well I have formed opinion based on talking with many doctors and reading medical information which I know there is a lot of information out there and each individual has a unique experience with this disease based on each patient’s personal circumstances…..Best of luck to you Helen and all!….beach45

[beach45]

in reply to: Ovarian Cysts / Thyroid Imbalance Link? #1171903

Thank you Bobbi! Great information!

[beach45]

in reply to: Why is RAI so controversial on the internet? #1171853

I am only going by what my endocrinologist told me that if the dosage is calculated correctly after the RAI Uptake is done, then there should not be a problem that a second dosage is needed; plus another endocrinologist here who I know gives a very high set dosage to make sure that the thyroid dies off (30 millicuries). Unfortunately, it may happen yet I thought stats I saw showed not very frequently is a second dosage needed yet a person would really need to discuss with their doctor or do research on stats. Plus unfortunately is it not an exact science and is a reason why the endocrinologist I mentioned gives a set amount that it more likely will work the first time; yet seems all the doctors I know do it differently. I am not sure if there is a discussion on this in the archives?

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