[ewmb]

#1018794

Just wanted to let those here know that I am now four months on levoxyl and getting better each day. I finally started to feel really some better about 2 weeks ago. Had RAI on May 8th and went hypo by the end of August. My last TSH was 23, still high but a lot lower than it’s highest which was 62! I am sure I’ll go up to 75 mcg dose of levoxyl. Slow and steady is winning this race but I wish it were faster most of the time.

RAI was my choice from the beginning of my diagnosis in 2007 and I’m so glad that I finally got to have it last spring.

Happy Holidays to all.

ewmb

[SeeSallie]

#1067179

Thanks so much for the update. At this point I just check back here for updates. I hope others will post theirs too.
My only update is that in 2 months I’ll have my 2nd set of lab tests to show where I am since RAI. I’m exhausted daily by 2pm…but no jitters and no palpitations.
First set of labs showed normal levels, but Dr is expecting that to change soon. That was at 4 weeks post RAI.
Sallie

[ewmb]

#1067180

Sallie,
I hope that your next results are good too. I had my tsh go way down to almost nothing before I went hypo so don’t be surprised if it goes the wrong way before the right way. I hate all the waiting too. Glad that your palpitations are gone. Isn’t that great? I hated them. I still have hand tremors every once in a while when I am very tired but that’s getting better too.

ewmb

[hyperteacher27]

#1067181

Hi Folks,

I am four days post RAI and today has actually been the worst, but maybe just because I went back to work. I teach 9th grade English and throughout each class I was sweating so much that sweat was dripping off my nose! ” title=”Sad” />

I have also felt my heart pounding all day.

I am hanging in there though and can’t wait to start feeling better! I am actually looking forward (in a very disturbing way) to feel hypo, just because I have no idea what that feels like.

More to come….

Oh and my doctor is having me get labs on Dec 16th so we’ll see!

[runlacie]

#1067182

ewmb, I’m glad you are feeling better! HOORAY!!!! I have also been feeling great these past couple weeks. I can’t believe I found myself again. WE DID IT!!! Thanks for being here to share the journey.
Happy Holidays!!!

[hockey]

#1067183

Congrats Lacie & ewmb – glad to hear you are both feeling better. Hope you enjoy the holiday season this year and have a healthy 2010.

Sallie – I guess we are getting there slowly.

Reading your posts (along with everyone else who has posted) was helpful in deciding what to do prior to treatment (RAI) for me – thanks!

I had RAI 2 mths ago now, 5 weeks after I took the dose it was awful – thought I was having TS (or heart attack) – guess it wasn’t a full storm, but definitely something was happening thyroid related as my gp couldn’t point his finger to being anything else after a physical, blood test & ekg. Initially my #s went up – WAY UP! Now they are starting to come down – hurray. Ay my endo appt. on Wed, he said most (& I’m assuming he means his patients) would be hypo by now – he’s now thinking that it (going hypo) will happen anytime now and has asked for weekly blood tests – a bit of a pain with all the other running around to do this time of year, but at least he will start Rx sooner so that I don’t hit rock bottom since it does take so long to build up/accumulate the hormone in your system, I am thankful for that. My patience is better following RAI, although I had absolutely no patience this past month for a week or so due to PMS. Hopefully that will get better as the numbers come down. Is one more sensitive to PMS with having a thyroid problem? Does it get better once your thyroid is ‘normal’ – ie. normal levels are reached?

I have another question too:
– before RAI, my endo always tested TSH, T3 & T4 … however, now that I’ve had RAI, he is only testing for TSH & T4. Why not continue to test T3? Any ideas? I didn’t realize it (T3) wasn’t on the lab request as I didn’t have it with me when I saw my endo on Wed (it was sitting at the lab). I wish that I had the req. as I could have asked about it then – now I am just sitting here wondering why as I track the results. I only realized T3 was missing as I had a message from his office saying TSH <0.05 & T4 18.4 & no T3 value (all #s Canadian). Wouldn’t you still want to measure T3 as it’s the more active form anyhow? Has anyone else had the same experience? Thanks!

[Bobbi]

#1067184

Most of us, at one time or another, have asked this same question, hockey. But, no, it is typical for our doctors to request less in the way of thyroid numbers, over time. Eventually, you can expect your doctor to request only the TSH number and none of the the actual thyroid numbers. There’s one exception, typically: if you encounter a problem, there might be one or two blood tests requested that include a more complete look at the thyroid numbers. But the tendency is to go to fewer tests over time. There may be diagnostic reasons for it — it may help, initially, give the doctor a broader view of what is happening, to know the T3 situation. An especially high T3 at time of diagnosis can help to guide the choice of antithyroid drug, whether or not to prescribe a beta blocker, etc.

[MyTAnswers1]

#1067185

:” title=”Question” /> Good Morning, well sort of, never really good anymore. I am new to this, but relieved to tears to find others who like myself at struggling with various stages of Graves Disease. I was diagnosed with Graves Disease in March 2009 after my second go around with subclinical thyrotoxicious (still can’t spell it right). My doctor figured the stress from my second total knee replacement which was in February probably triggered the thyroid to go wild again. My TSH on 03/28/09 was <0.004, T4 Free was 2.40 and T3 Free was 627. Wild indeed and I has feeling all the miserable symptoms while trying to recover from the knee surgery. So, long story short, here I am in December, Hyper is in full force — heart pounding, jittery, can’t sleep, muscles weak, eyes bothering, headaches, etc — and looking forward to ablation therapy in January 2010. Question: is this what is referred to as RAI in your other posts? I have been all over the chart with my readings over these last few months. My current readings as of 11/25 are TSH 0.01, T4 Free 1.30, T3 Free 424. The TSH has been as low as <0.004 and as high as 35.90. In September the doctor has thinking that I could be going into remission, but the November readings ended that hope.
I feel like a freak. I am not my usual self and my performance at work has suffered greatly this last year. I have finally come to accept the fact that this is a long-term condition. You know, the knee surgery will heal and normally you can return to your "normal" self after a period of time. Not so with Graves. It keeps coming back and changing symptoms and I never know from one day to the next how I will feel. So now I work to try to keep moving at a steady pace and keep low key, and to keep telling people how I feel and what is behind it in the hopes of educating them to this miserable condition. It seems that either people I talk to don’t have a clue what the thyroid is or how it controls your body, or they know someone who is at some stage of a thyroid problem. So it is not always easy for people to understand unless they have been in contact with someone who has it and even then they are puzzled but more accepting of it all. I am so glad that my doctor referred me to your website when I asked for information. Enough for now. Thank you.

[ewmb]

#1067186

HI,
Yes RAI is Radioactive Iodine the same thing as ablation therapy. People here do understand so ask anything. I remember crying and crying and feeling like I was myself in another body that wasn’t doing what I wanted or needed. It stunk. Keep reading the posts here and you will find some answers but remember that all Graves patients don’t have exactly the same reaction to treatments or symptoms. I wish the doctors would remember this more.

Hope you start to feel better soon. When is your RAI scheduled for? You just said January.

ewmb

[kismetyeah]

#1067187

I agree that most people don’t even know what the thyroid is for, or what havoc it can wreak on a person’s body and emotions! I was diagnosed with Graves two years ago, but the doctor said, based on my symptoms, I probably had it for ten years prior to that, in remission, off and on. I lost my marriage, and never knew why. I was misdiagnosed with post partum thyroiditis, but with the recurrence, was properly diagnosed after a RAI scan two years ago. I started a new job and immediately, the Graves kicked in again. I opted for RAI, and was treated on July 2, hoping to only be out of work one day, and recover during the July 4 weekend. It turned into a nightmare, with a severe thyroid storm, and the collapse of my esophogus, my eyes bugged out of my head, and I got migraines and double vision. I was fired for missing three weeks of work, though it was documented by my endo. Now, I am hypo, and I was given 150 mgs of synthroid, which was too much, so I began having hyper symptoms again. I also still have some hypo symptoms, which is confusing. I can barely walk due to joint pain, I have palpitations, I’m exhausted, but can’t sleep. My doctor lowered my dose of synthroid to 125 just prior to Thanksgiving, and said by middle of next week, I should see a change.

What went wrong? I have not met anyone who has encountered this with RAI. My doctor wrote a letter to my work stating that my reaction to RAI was severe and uncommon, and stated to me that he had only seen one other patient in his years of practise with this reaction. I can’t collect unemployment because I have to be physically able to search for, and secure a job, yet I am not eligible for disability, because this condition (hopefully) won’t be a lifelong issue that will affect my job performance or ability to work. I have lost everything, and am now a live-in caretaker for my 98 year old foster mom (I also have three kids at home with me, and my oldest, living away from home ,gave me my first grandchild last year! I watch him twice a week). The family just looks at me like I have three heads when I tell them that I don’t feel well due to my thyroid and Graves disease. My body is not something I have any control over anymore! Graves is not a known disease, and others who don’t have to deal with it, don’t seem to care, because they can’t "see" anything wrong. I just don’t want to complain, but how will they ever take this seriously?

[Bobbi]

#1067188

You have really had a rough time of this disease, kismetyeah. My heart goes out to you.

I do hope this new dose of replacement hormone puts you in the right spot. I know it’s tough, but you need to accept the fact that until you get your body at controlled, normal levels of thyroid hormone for a few months, you probably are not going to feel completely well. Our bodies need time AT normal levels to heal. And the longer our bodies were battered by too much thyroid hormone, the more true that is. It helped me a lot during that time, to look for wee bits of improvement. It was so easy to be impatient, because I’d felt so rotten for so long. But by looking for improvement, rather than "Well" or "Normal" I was able to focus on how things were improving, and it gave me hope, and perhaps a bit more courage.

Well, anyway, fingers crossed that you start feeling a little better, day by day from now on.

[susandemarco]

#1067189

Hi,
Here I am again wanting the magic answer. Can someone explain to me if what you refer to as TSH is the antibodies. My last
blood work showed that my blood work for my thyroid was in the normal range, but my antibodies were high. I have been taking
PTU for the last few months and am on two 50mgs twice a day.

I am scheduled for RAI the first week of January, but I keep vascillating with whether to take it or just keep taking the PTU. At this
point I am feeling fine, accept in stressful situations. I know the ultimate decision is mine alone, and I think that is what is so
frightening to me. In all the years that I have had this disease, I never had an eye problem or any type of swelling of my feet or
face, or high blood pressure or anything like that. So I am afraid that if I take RAI, I would be opening up a can of worms and start
getting all these other symptons. I have spoken to a few people who have had taken it and they all are telling me to do it and
not to worry. By the way they both seem to be fine and they did take it at least fifteen years ago. In fact, one of them is my
urologist.

Again I would appreciated more information. You guys are so understanding, and are always there to answer.

I just want to tell that my doctor said that because my antibodies were high, if I go off PTU, I will go back to being hyper and will not go
into remission.

Thanks again,
Susan

[Bobbi]

#1067190

TSH stands for Thyroid Stimulating Hormone. It comes from the pituitary, which acts as a type of "thermostat" for the production of thyroid hormone. If the pituitary senses too much thyroid hormone it lowers its production of TSH. If it senses to little thyroid hormone, it raises its production of TSH. The ability of labs to test for very teeny quantities of TSH is one of the reasons our doctors rely on it as a way. So TSH is not an antibody.

I’m not sure what tests your doctor may have run to look at the antibodies — the lab report might have indicated "antimicrosomal" tests, or "antithyroglobulin" tests. There may also be some other, shorthand language involved. (Which isn’t helpful, I know.)

To address another issue you raised, RAI does not "cause" the eye disease (and, conversely, PTU does not keep it from happening). In some patients who have undergone RAI, there is a temporary worsening of their eye symptoms, which is thought to occur because RAI may stimulate the immune system. Anything that stimulates the immune system is going to increase the symptoms of any pre-existing autoimmune disease.

And, yes, if you do go in for RAI, they will take you off the PTU for a week or so prior to the RAI. They may put you back on PTU after the RAI has had a chance to get into your thyroid, but at least prior to the test, they want the thyroid cells to be "available" to the radioactive iodine. So, you WILL become more hyper for a week or so. It isn’t pleasant, but I thought it was a fair trade off. I got a treatment that eliminated my excessive levels of thyroid hormone, and allowed me to begin healing. Also, my doctor gave me a beta blocker to take during this time, which helped — a lot — with the hyper symptoms.

Wishing you well,

[Hopeful23]

#1067191

SO happy to here this Emily ” title=”Smile” /> We went through our treatment together and its so nice to see you improving. Makes me smile. Continue with the updates ” title=”Smile” />

[ewmb]

#1067192

I am now on 75mcg of levoxyl. My last TSH level was 23. I am to try this for 8 weeks and then get levels checked. I have lost almost 10 pounds, feel a lot better and hope to get back to my regular exercise in the new year. My periods are still strange but that comes with the territory and my age of 46.

Hope everyone has a great holiday season with family and friends. That’s what counts…….

ewmb

[Author]

Posts