Aa
desperate and upset.....
Hi. I left a post here on 30 April and only one person wrote back and i dont feel reassured at all. Now feel soo scared and alone that I cant get support from this forum. Maybe I should switch to another one. I cant think straight. Sorry
Lauren
Lauren
Hi
Thanks for putting out the information on your history. It helps alot.
You had RAI in January for Graves. I had RAI for Graves in 2003. I was very unstable until 2007. I was in sheer panic - lost my job too. etc etc - as you say.
You can read my journal for the details if you want to.
First - RAI is not an overnight fix at all. it take months to achieve the gland to die off to where it will remain permantely- this is before meds are stable enough to start the healing process. You can be swinging up and down naturally for quite a while - and then yet - taking a consistant thryoid medication everyday - can sometimes spike levels - or drop then like a hat. You are going through a very hard process right now. It does get better
Both being hyper or hypo can cause severe anxiety. It doesn't matter what condition you have. Anxiety is common. This make it 10times harder to deal with.
Now as for meds. I was on Synthroid for years . I was one who just never did well on it. Even through my conversion was "normal" on the labs - I was one that needed more T3 to function. I did benefit tremoundously from Armour. You may - or may not, but it is too soon after RAI to know.
Graves is tough no matter if you had RAI - or not. It's all a healing process now for you. I suggest keeping a log each day of how you feel - what dosage of med your on and track your labs too.
It's a process of finding what "lab numbers" you ( I stress YOU ) are most comfortable getting too and start the tweaking process of finding the best range so you can get your life back. This is difficult to do alone - when you are so ill with symptoms. If you have a buddy you confide into there near you - ask to have them help you too and have them go to all your doctor appts if possible. Also we are here too.
Speaking of life back - I know many want to return to their normal lifestyle. But this is the time -- where you need to sit back and start looking at your life and what you want. I found my Graves had went out of control when I was at my MOST stressful time in my life. I found - because of WHO I was - always living for everyone else - instead of me - that made me very ill.
I still have stress now - I still get anxious at times - but controlling who I am and knowing limitations has definately helped keep me stay well after finding my optimal levels with my meds and adding beneficial vits and minerals to keep me well too.
If the anxiety is pushing you over the edge - You can look into magnesium at night to help you - no more than 400mgs. You could try Selenium to help you get extra conversion, but that can work for some and not others too. Just some thoughts for you to think about here.
I suggest getting a Vit B and D lab to make sure you haven't depleted them after RAI - that does happen with radio active iodine therapy.
Either way - you can post here and certainly you will get feedback. Like above, so many are so busy. I know the desperation you are feeling, please be patient here. You will be supported.
Thanks for putting out the information on your history. It helps alot.
You had RAI in January for Graves. I had RAI for Graves in 2003. I was very unstable until 2007. I was in sheer panic - lost my job too. etc etc - as you say.
You can read my journal for the details if you want to.
First - RAI is not an overnight fix at all. it take months to achieve the gland to die off to where it will remain permantely- this is before meds are stable enough to start the healing process. You can be swinging up and down naturally for quite a while - and then yet - taking a consistant thryoid medication everyday - can sometimes spike levels - or drop then like a hat. You are going through a very hard process right now. It does get better
Both being hyper or hypo can cause severe anxiety. It doesn't matter what condition you have. Anxiety is common. This make it 10times harder to deal with.
Now as for meds. I was on Synthroid for years . I was one who just never did well on it. Even through my conversion was "normal" on the labs - I was one that needed more T3 to function. I did benefit tremoundously from Armour. You may - or may not, but it is too soon after RAI to know.
Graves is tough no matter if you had RAI - or not. It's all a healing process now for you. I suggest keeping a log each day of how you feel - what dosage of med your on and track your labs too.
It's a process of finding what "lab numbers" you ( I stress YOU ) are most comfortable getting too and start the tweaking process of finding the best range so you can get your life back. This is difficult to do alone - when you are so ill with symptoms. If you have a buddy you confide into there near you - ask to have them help you too and have them go to all your doctor appts if possible. Also we are here too.
Speaking of life back - I know many want to return to their normal lifestyle. But this is the time -- where you need to sit back and start looking at your life and what you want. I found my Graves had went out of control when I was at my MOST stressful time in my life. I found - because of WHO I was - always living for everyone else - instead of me - that made me very ill.
I still have stress now - I still get anxious at times - but controlling who I am and knowing limitations has definately helped keep me stay well after finding my optimal levels with my meds and adding beneficial vits and minerals to keep me well too.
If the anxiety is pushing you over the edge - You can look into magnesium at night to help you - no more than 400mgs. You could try Selenium to help you get extra conversion, but that can work for some and not others too. Just some thoughts for you to think about here.
I suggest getting a Vit B and D lab to make sure you haven't depleted them after RAI - that does happen with radio active iodine therapy.
Either way - you can post here and certainly you will get feedback. Like above, so many are so busy. I know the desperation you are feeling, please be patient here. You will be supported.
First, I'd like to reassure you, also. It can take a long time for symptoms to subside. There was recently a thread by gimel about a study that tested the blood flow to the parts of the brain that (for one thing) control anxiety. They found that six weeks after achieving euthyroid (normal thyroid levels), the blood flow had still not normalized in the hypo patients. So, since you're just at the beginning of your hypo journey, don't get discouraged and think the symptoms will never go away...it just takes time and patience (we all end up very virtuous!).
In my personal opinion (disclaimer: not a doctor), I would not even think about adding any T3 meds (synthetic or Armour) to the mix at the moment. T3 is lots more potent than T4 and very volitile (fast-acting). Once you stabilize your labs on the T4 and get to the fine-tuning stage or beyond, you can think about T3 if symptoms persist. In the meantime, you seem very sensitive to changes in T4 dosage. You could probably quadruple that sensitivity if you start playing with T3.
I also think your meds increases and decreases have been way too aggressive. You started on 50, two weeks later were hyper, and your doctor cut your meds. Why not reduce the dosage. Or stop meds for three days and then resume at, say 25 or even 12.5? Then you were on "a small amount", and your labs weren't looking too bad...hypo, yes, but not swinging wildly. Then from the "small amount" (please give mcgs), you went directly to 100 mcg. How long were you on the 100 mcg before your latest labs (FT3 3.9, FT4 10.4, TSH 12)? I liked your doctors idea of "slow and steady". Some of us, who are very sensitive to meds, have to move up in real baby steps (e.g. my endo just increased my levo from 75 to 81.5 - too much and I had to go back to the 75). It does take a lot of patience, but it's better to know you're working toward a long-term goal than to move too fast and suffer the side effects of the meds (being hyper) along with everything else.
It takes at least 4-5 weeks for a dosage change to stabilize in your body and for the labs to correctly reflect the change. The advantage to moving slowly is that you can allow the dose to stabilize without fear of going hyper. If you don't wait 4-5 weeks, you haven't even given the new dose a chance to kick in. So, you end up not knowing what actual dosage the lab results reflect.
Your current labs look good...FT3 and FT4 are both within range. They could probably move up a little. I wouldn't worry too much about the TSH. It might come down some more, and it might not, but it's not nearly as important as the free's. Just remember that even after all your numbers normalize, your symptoms might persist for a while. Don't let it discourage you...you're on the road.
In my personal opinion (disclaimer: not a doctor), I would not even think about adding any T3 meds (synthetic or Armour) to the mix at the moment. T3 is lots more potent than T4 and very volitile (fast-acting). Once you stabilize your labs on the T4 and get to the fine-tuning stage or beyond, you can think about T3 if symptoms persist. In the meantime, you seem very sensitive to changes in T4 dosage. You could probably quadruple that sensitivity if you start playing with T3.
I also think your meds increases and decreases have been way too aggressive. You started on 50, two weeks later were hyper, and your doctor cut your meds. Why not reduce the dosage. Or stop meds for three days and then resume at, say 25 or even 12.5? Then you were on "a small amount", and your labs weren't looking too bad...hypo, yes, but not swinging wildly. Then from the "small amount" (please give mcgs), you went directly to 100 mcg. How long were you on the 100 mcg before your latest labs (FT3 3.9, FT4 10.4, TSH 12)? I liked your doctors idea of "slow and steady". Some of us, who are very sensitive to meds, have to move up in real baby steps (e.g. my endo just increased my levo from 75 to 81.5 - too much and I had to go back to the 75). It does take a lot of patience, but it's better to know you're working toward a long-term goal than to move too fast and suffer the side effects of the meds (being hyper) along with everything else.
It takes at least 4-5 weeks for a dosage change to stabilize in your body and for the labs to correctly reflect the change. The advantage to moving slowly is that you can allow the dose to stabilize without fear of going hyper. If you don't wait 4-5 weeks, you haven't even given the new dose a chance to kick in. So, you end up not knowing what actual dosage the lab results reflect.
Your current labs look good...FT3 and FT4 are both within range. They could probably move up a little. I wouldn't worry too much about the TSH. It might come down some more, and it might not, but it's not nearly as important as the free's. Just remember that even after all your numbers normalize, your symptoms might persist for a while. Don't let it discourage you...you're on the road.
hi, lauren,
you have been through a lot in the last few years. it will get better. i can empathize with you as i have hyper/hypo and anxiety/depression. i don't know which came first, and i guess at this point (i'm almost 31), it doesn't really matter. however, having hyperthyroidism makes anxiety and depression sooooooo much worst.
you are on the right track because your graves has been treated and the subsequent hypothyroidism is in the process of being normalized (unfortunately, this does take several months).
be reassured at this; tell yourself that you're on the path of recovery; you have a gameplan in place and you're working through the process. slowly and surely you will work through the tough days, and as you move forward, there will be less of those bad days. then, instead of you having bad days, they will become bad moments that you will work through and, eventually, those too will pass. and then you'll say to yourself, "thank goodness i'm not like that anymore. thank goodness i can think about normal things and have normal thoughts."
anxiety *****. it easily transitions into depression because the anxiety makes you want to curl up and sleep so that you can reset your system. i would get so anxious and upset and cry. i'd go to sleep and wake up feeling a little better. however, the dread feeling would rear its ugly head. for me, i'd wake up "normal" for a split second, but the obsessive compulsive thoughts would destroy that quickly. for me, that's what anxiety is...it's an obsessive compulsive thought disorder. i just wanted to think "normally" again. it took some time (and zoloft), but i'm better now. i have some breakthrough anxiety, but it's manageable.
be patient with yourself and when you're having the "bad thoughts", tell yourself it's your mind having a thought disorder. try to redirect your thoughts to the steps you've made to fix your situation. think about how far you've come and think about the steps you are/will be taking to get better.
take care of yourself.
you have been through a lot in the last few years. it will get better. i can empathize with you as i have hyper/hypo and anxiety/depression. i don't know which came first, and i guess at this point (i'm almost 31), it doesn't really matter. however, having hyperthyroidism makes anxiety and depression sooooooo much worst.
you are on the right track because your graves has been treated and the subsequent hypothyroidism is in the process of being normalized (unfortunately, this does take several months).
be reassured at this; tell yourself that you're on the path of recovery; you have a gameplan in place and you're working through the process. slowly and surely you will work through the tough days, and as you move forward, there will be less of those bad days. then, instead of you having bad days, they will become bad moments that you will work through and, eventually, those too will pass. and then you'll say to yourself, "thank goodness i'm not like that anymore. thank goodness i can think about normal things and have normal thoughts."
anxiety *****. it easily transitions into depression because the anxiety makes you want to curl up and sleep so that you can reset your system. i would get so anxious and upset and cry. i'd go to sleep and wake up feeling a little better. however, the dread feeling would rear its ugly head. for me, i'd wake up "normal" for a split second, but the obsessive compulsive thoughts would destroy that quickly. for me, that's what anxiety is...it's an obsessive compulsive thought disorder. i just wanted to think "normally" again. it took some time (and zoloft), but i'm better now. i have some breakthrough anxiety, but it's manageable.
be patient with yourself and when you're having the "bad thoughts", tell yourself it's your mind having a thought disorder. try to redirect your thoughts to the steps you've made to fix your situation. think about how far you've come and think about the steps you are/will be taking to get better.
take care of yourself.
Firstly, I often put up questions or things here on the forum and they don't get answered. The forum is extremely busy and has got busier as time has gone on, so don't be too worried about no one answering you immediately.
Secondly, you sound like you have a few issues to deal with! From what you are saying it seems that you are still in the hypo mode of your illness. the TSH is still fairly high but your Free t4 and t3 seem to be ok. the T3 could probably come up a little bit.
I had severe anxiety and depression when my levels were both hypo and hyper, so it is more than likely you have the same thing happening to you. I was diagnosed with severe clinical depression and put on anti-depressants, for over 8 years. I kept telling them I was not crazy but ill. It took 15 years to get my thyroid disorder diagnosed. Now 16 months after having my thryoid out I can safely say my depression is only around period time.
I think you need to get onto something like Armour which has T3 in it as well as the T4. This will bring you back up a little with the T3 and help with the depression.
Are you making sure you aren't having your medication and then eating? Often this will keep the levels down as the thyroid medication gets absorbed and can not do its job properly.
I think once you get onto a T3 medication as well, I believe you will feel much better.
Hang in there!
Secondly, you sound like you have a few issues to deal with! From what you are saying it seems that you are still in the hypo mode of your illness. the TSH is still fairly high but your Free t4 and t3 seem to be ok. the T3 could probably come up a little bit.
I had severe anxiety and depression when my levels were both hypo and hyper, so it is more than likely you have the same thing happening to you. I was diagnosed with severe clinical depression and put on anti-depressants, for over 8 years. I kept telling them I was not crazy but ill. It took 15 years to get my thyroid disorder diagnosed. Now 16 months after having my thryoid out I can safely say my depression is only around period time.
I think you need to get onto something like Armour which has T3 in it as well as the T4. This will bring you back up a little with the T3 and help with the depression.
Are you making sure you aren't having your medication and then eating? Often this will keep the levels down as the thyroid medication gets absorbed and can not do its job properly.
I think once you get onto a T3 medication as well, I believe you will feel much better.
Hang in there!
SLOW down, take a lot of deeps breaths. I WILL get back to you, but you've given me a lot to think about...I need to sleep on it. You can solve this problem...it just takes time, and sometimes LOTS of it. Back later...
Maybe you should post in the "ask a doctor" forum, they may be able to help.
Hi, thanks for getting back to me Goolarra.... Heres my story again
I need constant reassurance at the moment as at times I feel like Im losing my mind. I had RAI in January after ten years of mismanaged Graves Disease on ATDS on and off. Have been suffering for two years with severe depression, OCD and anxiety and panic.Had to leave my job, flat, friends and life back in London to live with my parents in NZ. The whole thing has been devastating. I am taking antidpressants, Diazepam and seeing a psychologist. My life as I knew it have fallen apart. I am still functioning to a degree but it is getting harder. I look normal on the outside but havnt felt normal for so long. I have kept strong and kept beleving that it was my thyroid imbalance that has tiggered this whole thing.But now Im not so sure. As i said I decided to have the RAI after much deliberation and advice as I couldnt go on with ATDS for over ten years with no real remissions and I was too fragile to go to hospital for a TT.
Many things ( too long a story to go into at this point) have happened since the RAI as I went a little Hypo at first
and as my endo was concerned about TED he put me on 50mcg Thyroxine daily and within two weeks I had gone HYPER ( ft4 23, tsh 0.06, ft3 6.8) So they stopped the meds and two weeks later I had levels within range. But then 5 days later, i then crashed into HYPO very quickly to ft4 6.7 ( New Zealand) ranges 9-19) tsh 19 ( ranges 0.4 -4) and ft3 2.2 (ranges 2.5- 6.0). Endo placed me on a small amount of thryroxine as he wanted it to be slow and steady. The next tests, one week later wer ft4 5.3, tsh 28, ft3 2.4. and its been stayed similar to that for about 4 weeks. Of course Ive had numerous terrible symptoms during that time, too many to list, Im afraid. Lots of new ones as Ive never been Hypo before. Then he increased meds to 100 mcg per day and tests went to ft4 10.4 , tsh 19 and ft3 3.3 which was a good sign. During this time on 100 mcg I had a few patches of extreme hyperactivity (talking fast, speedy, energetic, kinda normal thinking and relaxed in a funny kind of way though scarily like I was on speed or cocaine). I have some times, very fleeting when I feel together and think this has all been some dreadful mistake, Im fine, its all over. It was my thyroid all along but these moments disappear as fast as they come . So its been a roller coaster.
Now my latest tests show ft4 11.1, tsh 12 and ft3 3.9. Which i know is good news as it shows Im converting well and the tsh is improving. But it scared me because as least wehn my levels were worse I could reassure myself that that was why i was feeling the way I was. Why do I feel worse psychologicaally but better physically. I am so scared and nervous all the time, which makes me feel so depressed and weird as it means I can never go back to LOndon and to working full time and socialising and just being me again. The other day I had nausea and vomited and severe headaches plus I had the worst panic attack yesterday, thought I was going to go mad ( like I might go over the edge). Now I have the fear of the fear. Most of the time i feel like Im living in a surreal nightmare. My psyhcologist it convinced its my Thyroid and that I also have post traumatic stress syndrome through all the life changes, worry, stress etc. I also have tinitus and noise sensivity and wake up every day with dread. My energy levels are better and so is my concentration so theres no real brain fog. But im so depressed and worried that even when my thyroid improves Im going to be left with severe anxiety and depression. yesterday was such a bad day I felt like I couldnt go on anymore. I hope I dont sound ungrateful for dramatic as I know there are so many people on here suffering more than me .
I just so need to know that its not all in my mind and that I can have these symptoms even though my TSH is dropping.
What do you all think. I have a support person here who has had Graves and has had her thyroid removed and has been my rock and she has explained to me that I am severely Hypo and nowhere near normal and that its going to be a long uphill battle to get the right numbers for me and it will take alot of tweaking of the meds. But I cant keep calling her so thought id come here for a second opinion.Sorry to write so much.
I am trying to keep going and stay positive but i feel I can never get back to the old me and Im too scared to go out the house at times and feel so isolated.
Many thanks
Best wishes
Lauren
Posted on 05/02/09, 07:05 pm
Posted on 05/02/09, 07:05 pm
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I need constant reassurance at the moment as at times I feel like Im losing my mind. I had RAI in January after ten years of mismanaged Graves Disease on ATDS on and off. Have been suffering for two years with severe depression, OCD and anxiety and panic.Had to leave my job, flat, friends and life back in London to live with my parents in NZ. The whole thing has been devastating. I am taking antidpressants, Diazepam and seeing a psychologist. My life as I knew it have fallen apart. I am still functioning to a degree but it is getting harder. I look normal on the outside but havnt felt normal for so long. I have kept strong and kept beleving that it was my thyroid imbalance that has tiggered this whole thing.But now Im not so sure. As i said I decided to have the RAI after much deliberation and advice as I couldnt go on with ATDS for over ten years with no real remissions and I was too fragile to go to hospital for a TT.
Many things ( too long a story to go into at this point) have happened since the RAI as I went a little Hypo at first
and as my endo was concerned about TED he put me on 50mcg Thyroxine daily and within two weeks I had gone HYPER ( ft4 23, tsh 0.06, ft3 6.8) So they stopped the meds and two weeks later I had levels within range. But then 5 days later, i then crashed into HYPO very quickly to ft4 6.7 ( New Zealand) ranges 9-19) tsh 19 ( ranges 0.4 -4) and ft3 2.2 (ranges 2.5- 6.0). Endo placed me on a small amount of thryroxine as he wanted it to be slow and steady. The next tests, one week later wer ft4 5.3, tsh 28, ft3 2.4. and its been stayed similar to that for about 4 weeks. Of course Ive had numerous terrible symptoms during that time, too many to list, Im afraid. Lots of new ones as Ive never been Hypo before. Then he increased meds to 100 mcg per day and tests went to ft4 10.4 , tsh 19 and ft3 3.3 which was a good sign. During this time on 100 mcg I had a few patches of extreme hyperactivity (talking fast, speedy, energetic, kinda normal thinking and relaxed in a funny kind of way though scarily like I was on speed or cocaine). I have some times, very fleeting when I feel together and think this has all been some dreadful mistake, Im fine, its all over. It was my thyroid all along but these moments disappear as fast as they come . So its been a roller coaster.
Now my latest tests show ft4 11.1, tsh 12 and ft3 3.9. Which i know is good news as it shows Im converting well and the tsh is improving. But it scared me because as least wehn my levels were worse I could reassure myself that that was why i was feeling the way I was. Why do I feel worse psychologicaally but better physically. I am so scared and nervous all the time, which makes me feel so depressed and weird as it means I can never go back to LOndon and to working full time and socialising and just being me again. The other day I had nausea and vomited and severe headaches plus I had the worst panic attack yesterday, thought I was going to go mad ( like I might go over the edge). Now I have the fear of the fear. Most of the time i feel like Im living in a surreal nightmare. My psyhcologist it convinced its my Thyroid and that I also have post traumatic stress syndrome through all the life changes, worry, stress etc. I also have tinitus and noise sensivity and wake up every day with dread. My energy levels are better and so is my concentration so theres no real brain fog. But im so depressed and worried that even when my thyroid improves Im going to be left with severe anxiety and depression. yesterday was such a bad day I felt like I couldnt go on anymore. I hope I dont sound ungrateful for dramatic as I know there are so many people on here suffering more than me .
I just so need to know that its not all in my mind and that I can have these symptoms even though my TSH is dropping.
What do you all think. I have a support person here who has had Graves and has had her thyroid removed and has been my rock and she has explained to me that I am severely Hypo and nowhere near normal and that its going to be a long uphill battle to get the right numbers for me and it will take alot of tweaking of the meds. But I cant keep calling her so thought id come here for a second opinion.Sorry to write so much.
I am trying to keep going and stay positive but i feel I can never get back to the old me and Im too scared to go out the house at times and feel so isolated.
Many thanks
Best wishes
Lauren
Posted on 05/02/09, 07:05 pm
Posted on 05/02/09, 07:05 pm
Send to a Friend Share This
Digg Del.icio.us furl StumbleUpon Facebook
Yahoo! Google
0 Replies Add Your Advice
Reminder: This is a support group for Graves' Disease. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.
You may also create your own Member Groups where you can moderate the discussion. Advice:
In adding this Advice, I lauren1, do promise to be nice.
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Add Your Advice
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