Aa
Out of control syptoms
Hi. I was dx with Graves 4 months ago I am 2.5 months post RAI. My numbers prior were free T4 >2.0 and TSH of <.01. Three weeks ago was the first time my Dr. ordered labs since RAI and numbers then were T4 <0.4, T3 25, and TSH 51.58. She put me on Levothyroid .125 mg, which I have been taking now for 15 days. She has not ordered new labs for 6 wks with f/u visit @ 7 wks. I feel so bad. I have gained 35 lbs, I have bouts of amnesia, confusion, fog. I can't drive because I will be in the car and get completly lost. I hurt. I am tired beyond belief. And I am experiencing crippling depression. I have on more than one occasion contemplated suicide. All I can do is lay on the couch. Is this normal? Everyone says I should have been started on TRH sooner, right after my RAI. And that I should be having more labs, every couple of weeks? I can't get any assistance from my GP or my Endo. They just say it takes time. My father in law is a Cardiologist and says they are full of BS and that my tx is verging on neglect. I have an HMO (kaiser permanente) and am stuck with no where to turn. Can you give me some answers???
hello,
I recently went to the er and had my blood taken. I faxed it to my doctor. My tsh was 0.25 , and he decided to decrease my medicine to 150 instead of 175. It has been about 4 days now since the change. I am not feeling well yet, but i hope to be feeling good soon. He says it should take about a week to be able and tell a difference. At least something has been done though.
I recently went to the er and had my blood taken. I faxed it to my doctor. My tsh was 0.25 , and he decided to decrease my medicine to 150 instead of 175. It has been about 4 days now since the change. I am not feeling well yet, but i hope to be feeling good soon. He says it should take about a week to be able and tell a difference. At least something has been done though.
definitely if you feel something is wrong, you should let your doctor know....it is probably related to the RAI, but maybe not. Even with "brain fog", you will knwo when something isn't right, so give him a call....
Thanks for the advice...when i first was diagnosed with hyperthyroidism i was told rai was the only long term treatment. Everything happend really fast, and i was not really educated on it. On my chart it shows "probable graves disease". I think i am feeling worse by the day. I can't think straight at all. It is really scary, i feel like i'm losing my mind. I am really looking forward to my next appointment. I am going to mension the meds you all told me about, and see what he thinks. I'm going to tell him something has to be done. I think i was better off just feeling tired than feeling like this. Hopefully i will get better soon. I'm not for sure the date that i had the RAI but i'm going to get a copy of my charts. I know it has been around 7 months. I thought it had been less than that but i was wrong. I'm hanging in there though...what other choice do we have right? I really look forward to your advice though. It feels good to know i am not alone. I really don't feel tired anymore, it's just the brain fog that is getting to me. Do you think i should let him know now what is going on? My appointment is on the 22nd of Feb.
Hey, I can sympathize - I had RAI and went hypo - never felt well on Synthroid. I finally switched to Armour thyroid, a natural desiccated pig thyroid, and I'm doing very well. I'm even losing weight without really trying.
I WAS TOLD BY MY DOCTOR THAT I HAD GRAVES DISEASE AND THEY SET ME UP TO HAVE THE RADIOACTIVE IODINE TREATMENT DUE TO OVERACTIVE THYROID AND I'VE BEEN TAKING SYNTHROID 125mgs EVERY DAY FOR OVER A YEAR AND DUE TO HAVING ALL THAT DONE I'M VERY OVER WEIGHT AND FEEL TIRED ALL THE TIME MY HAIR IS COMING OUT THE DOCTORS HAVE DONE ALL KINDS OF BLOOD WORK AND TELL ME THAT EVERYTHING LOOKS GOOD BUT I KNOW MY BODY AND SOMETHING IS'NT RIGHT,IF ANYONE KNOWS ANOTHER ROUTE I NEED TO GO PLEASE LET ME KNOW SOON CAN'T GO ON LIKE THIS.
Have you already had the radio active iodine treatment? If you haven't, I wouldn't. But it sounds to me as if you have & are now hypothyroid.
Is your Dr. an endocrinologist(thyroid specialist) or a family physican? Do you know what your last lab results were?
It's very important to keep a copy of all your lab results so you can compare. You have the right to get a copy from your doctor.
I'm surprised, if you have had RAI, that you are taking your synthroid everyother day instead of everyday.
Is the doctor testing your free t-3 & free t-4 along with your TSH, when he does lab work? If not, that may be part of your problem because the TSH, after the RAI, is always inaccurate & the doctors need to go by the free t-3 & free t-4, which is your thyroid hormone levels. Sometimes it takes up to 1 year or longer for your TSH to rise after being treated with RAI.
Also synthroid is a synthetic t-4 replacement, only. Sometimes people benefit if a t-3 repacement is added along with the t-4.
Cytomel is the name of the synthetic t-3 replacement. There is also a natural replacement which has both t-3 & t-4 in it called Armour Thyroid & some do much better on the natural than the synthetics. But it just depends on your system.
Your own thyroid naturally makes t-3 & t-4. When you have problems with your thyroid, it can be & often is life changing & educating yourself about the disease is very important to feel your best.
If you have anymore questions, I'll be back on tomorrow night.
Jean
Is your Dr. an endocrinologist(thyroid specialist) or a family physican? Do you know what your last lab results were?
It's very important to keep a copy of all your lab results so you can compare. You have the right to get a copy from your doctor.
I'm surprised, if you have had RAI, that you are taking your synthroid everyother day instead of everyday.
Is the doctor testing your free t-3 & free t-4 along with your TSH, when he does lab work? If not, that may be part of your problem because the TSH, after the RAI, is always inaccurate & the doctors need to go by the free t-3 & free t-4, which is your thyroid hormone levels. Sometimes it takes up to 1 year or longer for your TSH to rise after being treated with RAI.
Also synthroid is a synthetic t-4 replacement, only. Sometimes people benefit if a t-3 repacement is added along with the t-4.
Cytomel is the name of the synthetic t-3 replacement. There is also a natural replacement which has both t-3 & t-4 in it called Armour Thyroid & some do much better on the natural than the synthetics. But it just depends on your system.
Your own thyroid naturally makes t-3 & t-4. When you have problems with your thyroid, it can be & often is life changing & educating yourself about the disease is very important to feel your best.
If you have anymore questions, I'll be back on tomorrow night.
Jean
I can sympathize with you - I had RAI and was on .125 of Synthroid for about 3 years. In that time I never felt well. But my doctor kept telling me it wasn't my thyroid. I found out about a different medication, Armour Thyroid, which is desiccated porcine thyroid, found a doctor to prescribe it for me, and I'm feeling much better. I wish more doctors would at least tell patients about it and let them try it - it worked for me and for a whole lot of other people on another group I belong to. Hang in there - research as much as you can (I know you're busy with the little one). Best wishes!
I beleive the Dr.(endo) that generally answers questions on this forum is on vacation or something, He's been gone for 2 weeks, so hopefully he will return Monday. You need to post at the top of the forum though. They should start accepting questions over the weekend sometime I would hope. He's really good about answering every night when he's here.
I can totally relate to you, I had RAI in Feb of 05. You feel good for a couple of months than you thyroid starts dying off & until your meds. get dosed correctly you feel awful & that's a mild word for it. They call it hypo-hell. When you post to Dr. Mark it's good to post your last lab results along with the normal levels for that particular lab.
He's said many times before that your meds can not be dosed with the TSH after RAI. They have to be dosed with your free t-4 & free t-3. Did you have RAI due to graves disease or did you have something else wrong. Each time you go to the Dr. you have the right & need to get copies of all you labs & test results.
That way you'll have a running record for any Dr. you see.
I definently know how you feel, it's an effort just to think isn't it. When you start being very symptomatic like that get a hold of your physican so he can run lab right away, The RAI works for quite a while after you've had it so your levels could still be falling even with a thyroid supplement. You didn't mention what med. you were given either & Dr. Mark will have to know that too.
If you can't get your question posted right away keep trying ok.
You can also post under someone elses question after the posts start again when Dr. Mark returns. He may answer you & if he doesn't someone else will at least talk with you til you can get through to the Dr.
Hang in there,Good Luck & God Bless, Jean
I can totally relate to you, I had RAI in Feb of 05. You feel good for a couple of months than you thyroid starts dying off & until your meds. get dosed correctly you feel awful & that's a mild word for it. They call it hypo-hell. When you post to Dr. Mark it's good to post your last lab results along with the normal levels for that particular lab.
He's said many times before that your meds can not be dosed with the TSH after RAI. They have to be dosed with your free t-4 & free t-3. Did you have RAI due to graves disease or did you have something else wrong. Each time you go to the Dr. you have the right & need to get copies of all you labs & test results.
That way you'll have a running record for any Dr. you see.
I definently know how you feel, it's an effort just to think isn't it. When you start being very symptomatic like that get a hold of your physican so he can run lab right away, The RAI works for quite a while after you've had it so your levels could still be falling even with a thyroid supplement. You didn't mention what med. you were given either & Dr. Mark will have to know that too.
If you can't get your question posted right away keep trying ok.
You can also post under someone elses question after the posts start again when Dr. Mark returns. He may answer you & if he doesn't someone else will at least talk with you til you can get through to the Dr.
Hang in there,Good Luck & God Bless, Jean
Hi,
I had RAI back over the summer. I have been on .175 synthroid for 3 months now. My doctor was seeing me every month and checking my levels. This last time i went he said i was doing fine and that he would see me in 3 months. I have been really depressed. I think i am going crazy. I cant remember things, and sometimes i just break down and cry for no reason. I am afraid to go anywhere and do anything. I have a 4 yr old little boy and i feel guilty. I feel like everything revolves around my condition, because i cant think of anything else. I cant concentrate. I have major brain fog. I read you're articles and can really relate. At least I'm not going crazy. My next appointment is Feb.22. I have waited a long time for it. I am ready to have a breakdown if something does not change. I am only 22 and i feel like the past 3 years have just been a blurr. It's suppose to be the best time in my life. Especially since i have my baby. Sometimes i think he is the only thing that keeps me going. I would appreciate any advice that you could give me. Thank You.
I had RAI back over the summer. I have been on .175 synthroid for 3 months now. My doctor was seeing me every month and checking my levels. This last time i went he said i was doing fine and that he would see me in 3 months. I have been really depressed. I think i am going crazy. I cant remember things, and sometimes i just break down and cry for no reason. I am afraid to go anywhere and do anything. I have a 4 yr old little boy and i feel guilty. I feel like everything revolves around my condition, because i cant think of anything else. I cant concentrate. I have major brain fog. I read you're articles and can really relate. At least I'm not going crazy. My next appointment is Feb.22. I have waited a long time for it. I am ready to have a breakdown if something does not change. I am only 22 and i feel like the past 3 years have just been a blurr. It's suppose to be the best time in my life. Especially since i have my baby. Sometimes i think he is the only thing that keeps me going. I would appreciate any advice that you could give me. Thank You.
You're not alone, although I know it feels like that at times. After feeling HYPO my whole life, I found out a week ago I am HYPER. I'm going in tomorrow to get results of my scan. All my life, no one would treat my symptoms, and I feel hopeless. I have a daughter too, and feel inadequate sometimes, because I don't have the energy of other moms. I feel inadequate at work because my mental clarity is awful. If we all just keep posting on forums like this, maybe we can collectively find some solutions. I have heard that the combo of cytomel and synthroid sometimes helps. I am trying to covince my brother to try it, as he had rai a couple of years ago, and feels like the quality of life is so bad just on synthroid. Keep insisting the Doc do labs, and try different things, don't give up.
I just wanted to take a moment to thank everyone who responded to me yesterday. Some days are worse than others and yesterday and the day before that were a couple of the worst yet. ( I actually sat down and counted out my thyroid pills and wondered how many it would take to make my heart explode). I know that right now everything in my life is revolving around my medical issues and I do know that in time it has to get better. I get very little support here at home and some days I just throw myself a pity party. Please be reassured that I will do nothing to hurt myself. I have three beautiful daughters (7,4, and 11 mos) and I would never burden them with that. Again, Thank you to everyone for your care and concern. God Bless. Dana.
I had RAI in October of 2002, and it took a while to get my meds adjusted. I was on Synthroid .125 and the endo declared that I was fine, despite symptoms of tiredness, huge weight gain, joint pain, brain fog, etc.....I got tired of being told there was nothing wrong with me when I KNEW THERE WAS, and I started to do some research on my own. I found out about Armour, talked my GP into switching me, and the results have been nothing short of miraculous! I feel so much better - I found a doctor who adjusts the dosage based on symptoms, and I'm seeing good results. I now have some energy, I'm starting to lose weight (without dieting)....It can only get better!
My advice to you is to hang in there - it does take time to get the meds adjusted, regardless of what med you're taking, but also learn as much as you can about thyroid, treatments, etc. so you can advocate for yourself.
My advice to you is to hang in there - it does take time to get the meds adjusted, regardless of what med you're taking, but also learn as much as you can about thyroid, treatments, etc. so you can advocate for yourself.
MEDICAL PROFESSIONAL
The current treatment is fine -- but seems to have been started late - I usually start checking labs 4-6 weeks after RAI and every 4-6 weeks there-after until we start synthroid(or the like) then check every 5-6 weeks until the dose is right. At least you were started on a full replacment dose -- I have seen similar situation where the patient is put on only 0.025 then slowly increased....
The symptoms will take 2-3 weeks to begin to change. An alternative to speed this up is to add (on top of levothroid) cytomel 25mcg 1/2 tab twice a day for two weeks then go with straight levothroid.
The symptoms will take 2-3 weeks to begin to change. An alternative to speed this up is to add (on top of levothroid) cytomel 25mcg 1/2 tab twice a day for two weeks then go with straight levothroid.
Hi. I've known others who were post-RAI and it sure can be difficult! I wanted to pass along to you that Levothyroid and other T4-only meds have frequently left patients with the VERY symptoms you describe, no matter how high they raised it. You certainly don't need to live with those symptoms, so you might want to look into Armour, which gives you exactly what your own thyroid gives you. I mentioned this in another post, but I recently found a website called Stop the Thyroid Madness--maybe it can give you the answers you are looking for. It helped me.
I had RAI in Feb. of 05. I was being tested monthly after by my GP. I went from normal labs except for low TSH to a TSH of 59 in one month (early May). I was started on a low dose of Armour (30mg). I felt bad @ that time but nothing like I did 2 weeks later when my TSH hit 89. I could hardly walk, I was having frequent muscle spasms that seemed to follow my tendons, & brain fog wasn't the word. It seemed it was an effort to even think. My face swelled up like a ballon along with my rt. eye. I have never felt so weak in my life. Thnk goodness my Dr. listened & got me right in. I know how you feel & I'm sorry your Dr's aren't more attentive. I'd actually consider going to their office as a walk in & insisting on seeing someone. What they are doing is dangerous & absolutely ridiculous.
Can you get your relative to order some lab for you? A TSH, free T-3, & free T-4. You'll know within a day what's up with your TSH & other labs. Don't give up!!! Sometimes either you have to work around it or be insistant. I don't know why your Dr's aren't reacting to your increased symptoms,there's no excuse for that in my book, but don't leave them alone til they do. No one knows how bad you feel unless they have gone through it.
Do what you have to & don't give up. You are unique in God's eyes. Don't take a permanant solution to a temporary situation. You will feel better with treatment. God Bless You! Jean
Can you get your relative to order some lab for you? A TSH, free T-3, & free T-4. You'll know within a day what's up with your TSH & other labs. Don't give up!!! Sometimes either you have to work around it or be insistant. I don't know why your Dr's aren't reacting to your increased symptoms,there's no excuse for that in my book, but don't leave them alone til they do. No one knows how bad you feel unless they have gone through it.
Do what you have to & don't give up. You are unique in God's eyes. Don't take a permanant solution to a temporary situation. You will feel better with treatment. God Bless You! Jean
I'm a patient, so just wanted to offer a little encouragement while you await Dr. Mark's response.
I'm sure they informed you that the RAI treatment would result in hypothyroidism and your high TSH indacates you are there now!
I've corresponded with people that had the treatment and they will go through a very difficult time during the transition from hyper-Grave's to hypothyroidism after treatment. I know in the case of these I've spoken to, they were monitered closely by their Dr.s, in order to get replacement dosage of thyroid replacement hormone, titrated to the correct level.
Unfortunately, there is a period between, where even the Dr. has difficulty knowing how quickly each person's previous hormone levels will deplete and at what rate, so the patient will sometimes go through a difficult time with symptoms, until this process is completed. Once it is, you'll be on a steady dose that will make you feel better and you won't have these terrible fluctuations.
I'm sorry you're feeling so bad, the depression is common with hypo, plus other symptoms you listed. It'll take some patience just a while longer, then you'll be on the road to feeling much better. In the mean time, please always speak to someone, if you feel that suicidal tendency trying to creep up, that is VERY IMPORTANT! Your family loves you and God loves you and you'll have much better days ahead, just hang on!
Also remember, you have a medical condition, you are not crazy and the need for rest is genuine, your body needs it right now, so don't feel guilty about it!!
We're here for you anytime!
God Bless,
Jim
I'm sure they informed you that the RAI treatment would result in hypothyroidism and your high TSH indacates you are there now!
I've corresponded with people that had the treatment and they will go through a very difficult time during the transition from hyper-Grave's to hypothyroidism after treatment. I know in the case of these I've spoken to, they were monitered closely by their Dr.s, in order to get replacement dosage of thyroid replacement hormone, titrated to the correct level.
Unfortunately, there is a period between, where even the Dr. has difficulty knowing how quickly each person's previous hormone levels will deplete and at what rate, so the patient will sometimes go through a difficult time with symptoms, until this process is completed. Once it is, you'll be on a steady dose that will make you feel better and you won't have these terrible fluctuations.
I'm sorry you're feeling so bad, the depression is common with hypo, plus other symptoms you listed. It'll take some patience just a while longer, then you'll be on the road to feeling much better. In the mean time, please always speak to someone, if you feel that suicidal tendency trying to creep up, that is VERY IMPORTANT! Your family loves you and God loves you and you'll have much better days ahead, just hang on!
Also remember, you have a medical condition, you are not crazy and the need for rest is genuine, your body needs it right now, so don't feel guilty about it!!
We're here for you anytime!
God Bless,
Jim
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