[beach45]

in reply to: How do you stay calm? #1178948

It is not easy to stay calm in such instances, yet suggestions here are great!

I had to do meditation, acupuncuture, diverting my attention by keeping very busy either in the house or outside, I do volunteer for over 2 years now at a senior residence where my mother also lives and at Church 5 years, talking to people who have had similar experiences such as here and on the outside in my area, prayer and going to therapy.

I had scares in 2008/2009 with uterus and ovary. I had biopsies twice and Thank God the uterus was okay yet the left ovary had to be removed as I fought to keep the right (my ob/gyn later on said that was a good idea) as there was nothing wrong with it; yet I was being told the huge cyst on my Ovary was suspicious and possibly a cancerous tumor as also my CA-125 marker was very high. It all turned out okay thank God after having the ovary and cyst removed yet I was ready for anything;

Yet then in 2010 Graves turned up. Don’t know if there was a connection.

For me, I learned never to think the worse yet be realistic and do whatever it took to learn how to relax as I learned it is not what happens to us it is how we deal with it; not easy yet better in the long run at least for me.

I am sorry you are going through this and best of luck with this and please keep us posted.

Beach

[beach45]

in reply to: Question on Cytomel dose added to levo #1178871

I was not converting T4 to T3 properly a few months post RAI.

I have added some T3 and I have felt much better; I am still in an adjustment period though post RAI one year.

My current doctor had me on too high a dosage of T3 and I was reduced from 16 mcg to 10 mcg five weeks ago.

My T4 was also reduced signficantly from 125 mcg down to 80 mcg.

I can say from my experience 25 mcg of T3 is too much as I had anxiety attacks myself on it (another doctor started me too high and I should have questioned right away!); yet that is only my experience. Why now I am with my current doctor.

I do know that it is important to be careful with it due to potential increase in heart rate and bone loss. I do monitor my HR frequently. Most doctors are careful to not recreate a hyperthyroid condition. My last endocrinologist was okay with me trying T3 because he had a TT himself and knew with my low FT3 reading it could help.

My pharmacist said she has filled prescriptions of anywhere from 2.5 mcg to 50 mcg of T3; yet T4 is reduced significantly accordingly as per what others say here also.

I only go by what my experiences are. Not everyone needs it yet since I am still doing a trial on T3 for me I work very closely with my doctor, will immediately voice my concerns if I feel something is not right or I have terrible symptoms. Important to feel comfortable working with your doctor. It took me a while to find a doctor who will listen yet is also very careful with dosing. He tells me I would rather go under what you may need in T3 than over. Now that I was dropped 6 mcg I am starting to feel more hypothyroid symptoms yet I really prefer now to go as slow as possible. I do know people who had RAI a while back who take only Synthroid and do very well. I hate to say yet I felt like death on T4 alone. Yet we are all very different and have different needs.

Good luck with this moving forward.

Beach

[beach45]

in reply to: Can stress set you back? #1178904

Flora,

In my experience with Graves disease, extreme stress can bring out symptoms and make things worse.

I’ve had some family trauma and other health problems myself in a course of a few years as also being considered “slightly hyperthyroid” for years prior. I believe that the cumulative stress is what put me over the edge and made my symptoms worse. I was on antithyroid Methimazole for 2 years and never could get regulated even with the slightest dosage increase or decrease. So a year ago I had RAI.

You have been through a lot and it is good to hear that your husband’s surgery was successful!

I can relate as I won’t go into all that I’ve been through; yet it started with moving almost 10 years ago and my first husband dying shortly after we moved and downsizing and then just a series of other problems up until Graves diagnosis in 2010.

I find having an autoimmune disease that I have to take extra special care of myself now. I am still struggling a little one year post RAI yet I can say that things are much better than when my Graves symptoms were in full swing or when the doctors could not get me balanced while I was on Methimazole for 2 years. I had terrible joint pain on Methimazole; I also find when my levels are not completely balanced, I have more joint and muscle pain. I am also still learning ways to better deal with stress as I think with any health problem, stress can exacerbate symptoms. I try to eat right, exercise, pray, I used to get acupuncture weekly which greatly relaxed me, and take time for me. I have a wonderful therapist too who has helped me greatly with ideas to help me deal with stress.

I’m still learning three years later and it is important to take time for you as this disease in itself is very stressful as what I have learned.

Yet there is a light at the end of this tunnel. Best of luck to both of you and please keep us posted!

Beach

[beach45]

in reply to: 6month past RAI. Need your advice!!! #1178937

Stacy777,
I had RAI exactly a year ago.

I had a very good endocrinologist who is also a professor at a Medical University and supposedly up on the latest.

My TSH, FT4 and FT3 all showed hyperthyroid for almost four months post RAI; my endocrinologist told me if I still showed signs of hyperthyroid in my blood work six months post RAI, that I may need another round of I-131/RAI.

My TSH did go to 60 some time end of summer 2012. Then I went on Synthroid; yet endocrinologist did tell me some people their FT3 and FT4 can be normal yet TSH can be very low for a while post RAI. He actually had some patients who went eurothyroid post RAI.

He did not believe in antibody testing after RAI. He did not see the necessity.

MY TSI was high back with original diagnosis in Summer 2010; my TPO antibodies were normal back then.

I had my own TPO antibodies tested recently since none of my doctors will do antibody testing. They are now high which suprised me.

My thyroid eye doctor told me that my antibodies could be high 3-5 years post RAI. I was diagnosed with moderate Thyroid Eye Disease (TED) prior to having RAI yet my thyroid eye doctor told me it was okay to have RAI anyway.
My current MD told me not to worry about antibodies. What I do not understand is why some doctors do not test antibodies as I am experiencing thus far with three out of the four endocrinologists I have seen in the course of three years. Since I am becoming more stable on thyroid hormone, I no longer see my last endocrinologist as he released me to my primary MD who like I said does not do antibody testing.

Thank you Kimberly for the explanation about the TRAb antibody test.

I had subclinical hyperthyroidism for years prior to official Graves diagnosis with low TSH off and on about 15 years. No doctor tested me further and my symptoms went out of control at the end as then my FT4 was very high, FT3 and antibodies.

Well those are just my experiences as I’m always learning more and more about this disease from listening to others!

I wish you good luck with this situation and please keep us posted.

Beach

[beach45]

in reply to: T4 to T3 conversion #1178649

Actually I do take one of my thyroid pills at 3AM and then the other in the afternoon as my T3/T4 compound is dosed to take twice a day. Some say it is more effective taken that way. I do the brazil nut a day thing too.
Thanks for sharing that information Harpy!

beach

[beach45]

in reply to: Thyroid disease and diabetes links. #1178668

Harpy, very true; there are many who feel better like you said slightly above mid range. I am still trying to find the right area for my FT3 as I know if my FT4 is around mid range I am okay; seems FT3 for me may need to be higher. I never paid attention to FT3 prior to Graves diagnosis in 2010 as no doctor seemed to care to test it and I had no clue about it’s significance back then. That’s right the sweet spot could change over time with changes in our body and possibly with aging too. So many factors involved!

beach

[beach45]

in reply to: Thyroid disease and diabetes links. #1178666

Thank you for sharing that article Harpy!

My endocrinologist told me post RAI there is a greater chance of developing diabetes. He did not say whether if levels are controlled perfectly with thyroid hormone if that would still be the case. Yet I agree that would make a difference!

This too is a very involved subject especially since thryoid hormones have a role in insulin resistance. For me I was told to try to keep FT4 and FT3 levels at least at mid range as diabetes does run in my family. Definitely diet has a big role too in keeping things under control as you say.

Beach

[beach45]

in reply to: T4 to T3 conversion #1178647

Harpy,

Great points and thanks for sharing. Yes inflammation seems to be a very big issue with metabolism and weight.

I also sent you a PM.

Seems there are a lot of factors involved. I enjoyed your article of “Leptin in Autoimmunity.”

Going back to the original topic yes the T4 to T3 conversion can apparently occur with prolonged increase in leptin. Which also affects other factors.

I know that a lot of doctors right now do not work with this issue yet I see it as something up and coming to be addressed as I attended a webinar not too long ago online discussing this yet not through GDATF.

Beach

[beach45]

in reply to: Feeling depressed #1178621

Your welcome Steph82! Yes and that is because positive stories are typically not going to be posted because those people have gotten on with their lives! I had my share of ups and downs in my journey for 3 years yet there is now a light at the end of my tunnel; as far as eyes for me, I have moderate TED, diagnosed pre-RAI by an excellent TED doctor, one of the best in the country; he told me very low percentage of those who actually get affected post RAI and his Physician Assistant told me stop reading the stories of the Internet! Now if my TED had been worse, the doctor may have recommeneded TT for me. And I had that choice anyway! My eyes are no longer dry, gritty, burning or bulging like they were pre-RAI! I am getting checked though every 6 months as my thyroid eye doctor told me that the antibodies post RAI are active 3-5 years afterwards. Some who were uncomfortable with RAI turn to TT. My husband’s cousin for one had RAI 20 years ago and she is a doctor, and she is doing fabulous years post RAI on her Synthroid with one dosage change in all those years! She told me stop messing with that antithyroid drug business as you are making it hard on your body up and down and your eyes. I did not realize at the time that my fears were actually preventing me from taking a necessary step to help my body and mind heal! Well this is my story though as everyone has to do what is best for themselves with the guidance of a good endocrinologist. Some do well years on antithyroid alone or have remission, many do RAI or TT and don’t look back as they heal and move on. I look back at my fears and now I say why was I so anxious and upset? Part of that too was the disease.
I am sorry you have these types of days as I do understand as I’ve been there. Best of luck and please keep us posted….beach

[beach45]

in reply to: T4 to T3 conversion #1178645

Your welcome Kimberly! I haven’t been on in a while and glad to be back on because I’ve been going through some times yet I am seeing some more moments of normacly which is a blessing after fighting for 3 years. Still have to keep an eye on Moderate TED yet so far so good! Thank you and I’m excited to hear the outcome from this event in Washington this weekend; did not know GDATF will be exhibiting and involved; cool! I like to be able to help out others if I can with my story because I know how so many struggle and I’ve been there and have just about made it through the fight! And I can say it does get better in time! beach

[beach45]

in reply to: T4 to T3 conversion #1178643

Harpy,
Love what you have to say here. Definitely RT3 from what I see is a big factor; my doctors are not into testing it or believe in the theory behind it yet I had it tested on my own along with leptin and TPO antibodies and TSH, FT4 and FT3 in between going to the doctor the end of last year; Definitely a connection between the blood glucose and the leptin. The hormone leptin has been found to be a major regulator of body weight and metabolism. A very small portion of doctors work with leptin resistance yet I believe that is something like RT3 that eventually will be researched further and there will be more awareness in time. My leptin levels are way high along with blood glucose being at the high end in range. Like you said they are associated. In fact glucose was out of range right after RAI and when I went very hypothyroid. My current doctor though said that he has worked with some Graves patients who have struggles with metabolism after treatment as they need what he called a jump start for their metabolism. I am sure in time yet not currently more will be revealed. I see some people have no problems and I know others like myself who struggle with the weight issue. You are definitely on top of the latest! Thanks for sharing….beach

[beach45]

in reply to: Hives and itchy from methimazole #1178653

I am sorry you are going through this. I can relate.

I started with Graves symptoms in May 2010 in my early 50s.
I could not keep anything inside me without having to go the bathroom; the weight was coming off rapidly, I was shaking so bad I could not write and looked like someone withdrawing from alcohol, my resting heart rate was terribly high, and my legs were like jelly as when I went down the stairs they were shaking so bad and seemed like they were going to give out. Stubborn me waited until July 2010 to see my doctor. He said go on vacation which we did and it was miserable as I was a mess. Tested a week later and with testing Graves confirmed.
Like Kimberly said a doctor can prescribe a beta blocker for the shaking, tremors. I did something natural as I am very stubborn about medications as I’ve had nightmares with them in the past yet that is me. I also consult off and on with a holistic nurse practitioner who also works with conventional medicines. Yet people I know here went on a beta blocker for the shaking and tremors and did well. And I worked with an endocrinologist throughout the whole journey with antithyroid and post RAI for a while. Now I see my Primary Care doctor.
I went on 20 mg of Methimazole September 2010. The endocrinologist wanted me on 40 mg and I said I do not want that much as I’m very sensitive to medications and wanted to start out lower.
I had miserable itching and hives for 3 weeks. I reduced down to 10 mg of Methimazole per checking with my endocrinologist. I was taking benedryl every single night. On the 10 mg the itching and hives finally stopped yet it was not helping me for a few weeks as I was still hyperthyroid. I went on 20 mg of Methimazole for 3 months in Winter 2011 and that time around no itching or hives (except for the joint pain and mood swings), and I gained tons of weight; went very hypo, reduced to 15 mg then to 10 mg. I did not go on PTU because I read that if you have reactions to one antithyroid, then 50% chance that there may be a reaction to another. I hung in there only because I did not want RAI. Now I look back as for myself I had 2 years of misery on Methimazole, I can sincerely say for treating my horrible Graves symptoms I should have done the RAI to start. Yet I was worse than many starting out as I know of people who have achieved remission with antithyroid drugs or are on a very small maintenance dosage. I was told for a few years I was slightly “hyperthyroid” by TSH testing alone. If I had known that FT3 should have been tested back then and was diagnosed with Graves sooner, maybe I would have been one of the success stories having remission on antithyroid. Yet what I did through this journey was work very closely with my doctors and the last year I was being tested every month because my levels were going up and down so much on even the slightest change in Methimazole dosage. I’m still being tested frequently yet now I am up to every 6 weeks post RAI just about a year now and eventually I will be balanced completely as I see that day coming soon. It does get better; at least it did for myself. Like Kimberly said if the reactions to antithyroid are severe than a new plan of action has to be considered as per consulting with your doctor. Wasn’t an easy 3 year journey yet there is now a light at the end of the tunnel. Working closely with a good endocrinologist you will get there yet it can take a lot of time and patience.

Best of luck and please keep us posted.

Beach

[beach45]

in reply to: Feeling depressed #1178619

I feel for you. I was having horrible problems on Methimazole as you explain here up and down moods and depression. For me my FT3 was falling very low and my mood was horrible. I was on this for 2 years; up and down and no doctor could get me balanced. They suggested PTU and I said no thank you as I did not know if there would be much of a difference. I had terrible joint pain off and on while on Methimazole and I had terrible itching and some hives for the first three weeks I was on 10 mg. Then that ended and I went up to 20 mg and gained large amounts of weight which I still have never taken off. I had RAI May 3, 2012 and I will say now with my doctor getting my thyroid hormone dosages more accurate and my levels more balanced for me, the mood swings are not there as much and I’m much happier. If I had known for myself, that I would have had such a miserable ride on an antithyroid drug, I would have done RAI right away as recommended originally. Not that I am promoting RAI as every individual has to make up their own mind. Yes and I felt that way up and down and was seeing a therapist because of it and still am. It’s not easy yet once the thyroid levels are right for you with whatever treatment and done consistently, I am one who can say it definitely gets better! I like what Shirley says here too and yes like she says it is manageable yet like I found out it takes time and patience and sometimes for some longer.
The other thing too is keeping the doctor up to date with what is going on as whenever my moods sunk too low consistently on Methimazole, I had a blood test and sure enough my FT3 was way too low and then I got increased. Problem with me is that even with the slightest increase/decrease my numbers would go crazy either too high or low. I can say I am one now who is basically happy I did the RAI and now on the road to recovery!

Good Luck!

Beach

[beach45]

in reply to: T4 to T3 conversion #1178641

It is good to hear you were given the necessary T3 to function properly.

I was on Methimazole 2 years prior to having RAI in May 2012 and my FT3 was always in the dungeon. I felt horrible. I was not on block and replace though which I wish that doctors had done for me.

After my RAI my FT3 was still horribly low even in range yet not a good number for me. I had horrible symptoms on Sythroid alone. I felt like death even with FT4 and TSH in range yet the FT3 was lagging extremely.

I tried some natural thyroid hormone for a little bit yet that is not consistent, at least not for me and went to a T3/T4 compound. Now I don’t advise that for people only because you have to be careful with Compounding Pharmacies. The pharmacy I use has been here over 30 years and has an excellent reputation. The reason I use it is because I was also having issues with medication fillers. I know some people who use Cytomel or Liothyronine with success added to their T4 medicine with careful monitoring. We are slowly getting me to where I need to be as far as feeling more myself; weight issues are still there yet I do not have a RT3 problem and I see my leptin levels are too high for me yet that is another concept in itself having to do with metabolism which I will not touch on.

What I know as just what Kimberly says that a consistent FT3 when being tested over time is a clue that there is a FT4 to FT3 conversion problem. I am so thankful for my new doctor who listens and is working with me and I don’t feel lousy anymore as I did on the Synthroid alone. Yet we still have work to do to get me more balanced.

Also you may know already there is a Spring Symposium and Research Summit in Washington, DC this weekend through the American Thyroid Association : http://www.thyroid.org/thyroid-events-education-media/educational-programs-of-the-ata/annual-meetings/spring-symposium-and-research-summit-2013/

I hope that was okay to post? They will be talking about T3 when you look at the agenda under Program. It seems they are finding that more people are benefiting; that is, the ones that are poor converters and I believe as a result that maybe more will be revealed in time! Maybe in time there will be a timed release T3/T4 combo available for poor converters!

Good luck!

Beach

[beach45]

in reply to: Diagnosed in July, had RAI, on Synthroid, feel crazy. #1176094

NurseThomas,

Thank you; it’s been one heck of a journey for me yet I believe in time I will get there. So much of this is finding the right balance for the individual and it is not always about just being “in range!” In time things will balance out for you working with the right medical practitioners and giving this whole thing time as I am finding out too and hormones are so very sensitive and one slight change in levels the wrong way can make us feel horrible (at least this is my experience first on Methimazole and now on thyroid hormone post RAI.) Glad you reached out here and we can all help one another….beach

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