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Hi melischa,
Welcome, and I hope I can be of a little help.
First, if your TSH is low and your replacement hormone dose is being LOWERED, it means you are a little hypER, not hypO. Your doctor had you on a bit too much replacement.
Second, as long as our levels are still moving around, we don’t ever feel entirely well either physically or emotionally. It takes time on a stable dose of replacement hormone before we really start a full recovery from that period of hyperthyroidism and emotional craziness, and in some people it’s worse than others. It might depend on how long you were hyperthyroid to begin with and how long it takes to stabilize your levels after treatment.
RAI destroys a certain amount of thyroid tissue, and then in the next year or longer, more thyroid tissue continues to die out, both from the premature aging effects of the RAI and from the effects of autoimmunity on the thyroid gland. Depending on the dose of RAI given and how the individual person’s thyroid gland responds, the person might become stable on thyroid replacement fairly soon following RAI, or this might not happen for a year, or even the five years it took for me. However long it takes, you won’t begin a full recovery until you are stable.
It doesn’t sound like you are there yet. That might explain why you are having some of the continuing symptoms. You may also have some underlying inherited psychological abnormalities that are exacerbated by the thyroid issues not being completely well. That’s not uncommon either.
If you haven’t read a book called The Thyroid Solution by Dr. Ridha Arem, you might find it interesting.
This is frustrating, I know. If it’s any comfort, you should begin feeling better once you’ve been on the same dose of replacement hormone for at least six months to a year.
You are not alone and in time you will feel better. I was diagnoised with Graves 2002/2003. RAI 2004, by end of that year I was an emotional, nervous whack of a person. The 1st 3 years best description (light switch). 2006/2007 we learned that by lowering/higher dosage didn’t work for me and the Dr. went in great details to go over my file. He stated that even when I am in the normal range my mental behavior didn’t respond dose changes. And continues to prescribe 175 the past 3 yrs, whatever the levels. As for the eye bulging this is seperate, after staying normal for 6yrs, the eye Dr and Insurance approved surgery Aug 2008. To see the physical difference from this procedure as boosted confidence no longer stress as much. Mentally, emotionally I still have days just not as severe.
I have 6 month labs/Dr appt next Friday and will share my lab results and expereince. Hang in there!Hi all, new to the group. I was diagnosed with Graves in 2001. I was losing alot of weight in a short amount of time and I was always moving around so quickly. I had hyperthyroidism along with the big buggy eyes. I had RAI in 2003/2004 in order to have a baby and ended up hypo of course. My tsh levels were in the normal range of May 2008 and now found out I’m going hypo again which means my tsh level is not 0.17 and supp’d to be in 0.47 – 5.0 ranges so they have lowered my dosage of Synthroid. Even though my levels are off my doc is still saying that the symptoms I am having (which I will list) has more to do with me not the Graves.
I have been agitated, depressed, can’t lose weight, I get upset so easily whether it’s mad, glad, or sad. At the drop of a hat my moods change and this has all been happening since I’ve had my baby 3.5 years ago but both my family doctor and my endo have said that my tsh levels are in normal range – before this lab report of 0.17…and the symptoms I am having have nothing to do with the disease itself. I’m so confused, don’t know what to do.. I am on anti-psychotic meds, anti-depressents, synthroid, anti- agitation… like come on… I joked around stating she should just wean me off all and restart… I feel like a freak, a guinea pig, it’s frustrating….
Is anyone else going through any of this???? I want to know if I’m out to lunch or my doc’s are out to lunch.
Thanks for reading my vent… comments are welcomed!!!
Thanks for the replies. And yes Dianne that is correct I my labs proved hyper I got it mixed up. Thanks for reminding me. As for the dosage. I was on the same dosage for over a year but the thing is you are correct because my labs proved hyper a long time from that dose. Thing is I was feeling okay and then all of a sudden my labs changed. I don’t quite understand that part of it. Why does all of a sudden the labs change? As for the other symptoms of depression I was diagnosed with that before I got the Graves so that’s probably what it is, alot of it is low self-esteem as I’ve been heavy all my life which I am working on myself thru therapy to make me love myself, the Graves does not help. But in truth with the anxiety I think that is hereditary as my mom and brother have it too, but the agitation… I totally think that one is Graves.
I have another question though, now I had RAI would I still have a thyroid or just lost the actual hormone that it produces? Would I feel better if I got the actual gland totally removed or is it still there? I only had RAI due to the fact that I wanted to get pregnant so… and the condition worsened after I had Mackenzie. I even went to a post-partum physciatrist which in fact she told me the symptoms I’m feeling and the questions I answered from her perspective was not post-partum but was my thyroid. I get so confused…. grrrrr. I wish a magic genie would just take it all away and make it easy for me to lose weight instead of struggling, now mind you I do love my chocolate. LOL
Thanks for listening and answering!!!
Our need for thyroid hormone can change for several reasons ~ age, weight, activity level, hormonal shifts (menopause, pregnancy), all of these things can contribute. It typically doesn’t happen quickly, but small changes can make a big difference in how we feel, once we’re managing our levels with replacement hormone.
Also, once you’ve had RAI, the gland itself has been rendered ineffective, so having surgery to take out the tissue wouldn’t accomplish much.
I’ve been heavy my whole life too ~ ironically, I was finally getting myself together at the time I was diagnosed with Graves’. I’d finally been working out regularly, and ended up losing a great deal of muscle mass as a result. I also realized afterward that I’d been having this strange "buzzing" in my ears after a workout that was probably my blood pressure going through the roof.
It’s a complicated issue, weight. The one thing I can tell you is that buying clothes at the right size (maybe even a size larger than you think) will help you get through the day without constant reminders that you’re "pushing at the edges," plus it gives you more of an opportunity to move your body comfortably, which can help you keep weight off. I wish you luck with the self-esteem issue, I know it’s a tough one, and no one can "talk you out of it." There is an awful lot of judgment out there, and this is one thing we are unable to completely hide. Hold your head high, keep your posture, and you’ll LOOK sleeker right off. Remember that the size of your clothes has nothing to do with the quality of your SELF. How you act, how you treat people, those are far better indicators. Anyone that stops at your clothing size in order to decide whether you are "worthy" is pretty unworthy themselves. Try to see it as THEIR problem. As long as you are doing what you can to keep the situation in check (keep your cholesterol, blood pressure, heart rate in the normal range), and you remain somewhat active, you have nothing to feel badly about. It’s all about health and mobility.
melischa wrote: Thing is I was feeling okay and then all of a sudden my labs changed. I don’t quite understand that part of it. Why does all of a sudden the labs change?Because if you just measure TSH, it can lag behind by 6 months up to a year. That’s why people here and on all other boards tell to be testing free Ts as they will show your current state more reliably. Some doctors stick ONLY by TSH and we, the patients, need to educate them (or just plain demand the rest of the tests taken). This lagging behind accounts for your feeling hyper way before your TSH showed hyper.
melischa wrote: I have another question though, now I had RAI would I still have a thyroid or just lost the actual hormone that it produces? Would I feel better if I got the actual gland totally removed or is it still there? I only had RAI due to the fact that I wanted to get pregnant so… and the condition worsened after I had Mackenzie. I even went to a post-partum physciatrist which in fact she told me the symptoms I’m feeling and the questions I answered from her perspective was not post-partum but was my thyroid.Again, you may as well have been either hyper or hypo (and you TSH alone was not showing), either one can be responsible for the emotional liability.
RAI kills the gland, that’s the intention. (Even though sometimes it survives a dose of radioactive iodine and people have a second and even third dose). To supply your body with thyroid hormone, you take Synthroid.
On another note, you can’t imagine the joy when I read your post, that you did have a baby after RAI. I see a lot of questions about that ("How having RAI will affect my ability to have children?") – but not many personal accounts. Thank you for that!
You are very welcome. I had to have 2 doses of RAI and I have to say I had to wait a year to get pregnant because of that, I miscarried my first pregnancy only 5 wks along and no heartbeat, was more disappointed than upset really to be honest, but the same year I got pregnant with my daughter who is a joy.. too smart… LOL
And thank all of you… so just to get this right I should also have my T3 tested as well as a free T tested I’m really not sure I understand that term. She tested my T4 is this last blood test. She has been working with me she said that I could tell her how I was feeling and adjust my dosage as we went along but when is the madness going to stop.. grrrr… I’m so glad to have found this or ppl have directed me to this website. I actually thought it was down but then Peter the founder I guess wrote me from the facebook group and let me know to post and I’m so thankful I am not alone in this world of Graves. Noone I know around me has it. No groups no nothing so it’s a bit difficult for me to get people to understand. I can’t just go around saying oh I feel this way because I have Graves right? And I can’t say it’s my thyroid because it attacked my thyroid so I got rid of it… blah blah blah…. so does anyone have any suggestions??? I don’t know.. I get so mixed up and confused sometimes. I’m on so many meds for anxiety and depression and agitation. I will tell you what my pills are and the dosages
Effexor is 375mgs per day, Risperidone is 0.5 mgs X 2 per day, Cipralex – 10mgs per day, Synthroid – 0.125mgs per day… now it does say have on an empty stomach but honestly I have been just taking it just before I leave for work and that’s pretty much on a full stomach.. what is the difference? And I haven’t changed meds since last May so does it really affect it?
With all those pills in mind.. .keep in mind I have problems with lashing out with no warning signs, crying, aggitation, zoning out, feeling down and out… etc.. cloudy too… I joked with my doctor and said just wean me off of everything and restart…. she didn’t comment at all.. but I really wasn’t kidding at the time.. I’m sick of all this and I do pretty much everything she says to do..
Oh I’m also taking B12 vitamins for my metabolism but I honestly really don’t think it’s working…
I love this site and all replies thanks guys!!!
Okay. First thing first. The tests you are interested in are called Free T3 (FT3) and Free T4 (FT4). They have different ranges in different areas (in different labs), so if you say my FT3 is 6.5, nobody will have a clue unless ranges are provided. (Do not provide your tests here, as the moderators don’t approve. There are other Graves’ sites where people actually can post their tests and get comments and advise on them. Send me a message and I will let you know which sites.)
Generally, having these FT3 and FT4 within ranges is thought to be the cure for all your emotional and mental problems, so there will be no need for psychotic drugs. Some people have sensitivity even to ranges, so they stay closer to the lower end or closer to the higher end of the range, it is all achieved by trying and seeing. You are absolitely right, it’s like re-starting it all over again, one thing at a time.
Secondly, the emotions. I am reticent to actually write down my own actions when I had Graves rages pre-RAI, they were that bad. Just know that you are not alone. I had RAI 3 years ago.
However, it’s not quite normal to keep having these emotional and mental things post-RAI and on Synthroid. Again, knowing your labs is very important, and working with Synthroid levels is very important to get yourself into those ranges.
On top of your free Ts, there are tests yet that measures antibodies – those guys that attacked our thyroid to start with. Without your thyroid, they still can get agitated from time to time, and it’s hard to understand. They can affect your eyes way past RAI. In people who are trying to achieve remission on ATDs and save their thyroid, these antibodies tests are like a fine-tune tool to let them know if they are in real remission. These tests are called TSI (Thyroid Stimulating Immunoglobulin) and TRab (Thyroid receptor antibodies). There is a TPO test yet (Thyroid PerOxidase) that will show if you have Hashimotos rather than Graves.
That’s a lot of info to digest, I’ll leave it at this for now. Do send me a message so I can direct you to websites where people discuss tests.
Also, you should take your synthroid on an empty stomach at the same time every day for optimal absorption.
I take it an hour before I wake up in the morning.If you don’t then things can bind to your hormone and affect the amount of t4 and t3 in the blood stream. If you do want to take it closer to eating you should raise the amount of synthroid you take.
Also you should wait atleast four hours before taking calcium or multi vitamins after taking the synthroid because it effects absorptions. I’d also take it seperate from all your other medication as well.
Ah okay, I only ask because i tend to forget to take my meds so I take them all at once when I think about it in the morning. That’s why I asked. I’m actually starting to feel a bit better, maybe my new meds are kicking in slowly but surely. Thanks for all your help.
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