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This is kind of a long one but I WILL REALLY APPRECIATE any input. I am 31 year old male and type one diabetic for 18 years. I was diagnosed with graves disease a year ago and was very hyper TSH <0.006 range - 0.450-4.500 , T4 5.61 range - 0.82-1.77 (no T3 test at this time, March 2015) I was put on 30mg of methimazole for about 3 weeks and then it was upped to 40mg because I was still hyper. I remained on 40mg for about 1.5 months and then discovered I was over-medicated went hypo. T3 2.0 range- 2.0-4.4 , T4 0.43 range-0.82-1.77 , TSH 38.120 range- 0.450-4.500 at this time I took a drug holiday for a weekend and then continued with 10mg methimazole for about 7 - 8 months and my levels were fine. I then found out my levels were creeping back up a bit and was put on 15mg of methimazole. And have been on that for like 2 months and now take 15mg 1 day and 10mc the next are now within range again.

My symptoms however are horrible and they are actually worse than ever. I feel like complete crap. Even when I went hypo I felt hyper racing heart, anxiety etc. There were a couple months after I got on methimazole where I felt good. I would say I only felt good for 2-3 months. I sleep fine and this is the best time I have symptom free.

I do not understand how I can be so symptomatic with levels within range?

I have since been trying to get on beta blockers and calcium channel blockers to reduce my heart rate. I have not been able to tolerate any calcium channel blockers, but have been switched to new beta blocker bisoprololI have only been on for like a week and seems to be going just ok, fingers crosses

I had an ultrasound a couple weeks ago and said my thyroid was all lumpy and typical graves looking thyroid.

My main complaint is heart racing/palpitations, extreme anxiety, lightheaded, dizziness and leg weakness I am not sure if it is related to my thyroid, but I know when my levels are off it definitely exacerbates my symptoms. I have 24/7 dizziness and am unbalanced. I will list my symptoms that have completely put the brakes on my life as I know it. Here they are:

Dizziness - like a moving, spinning, tilting, lightheaded, unbalanced feeling with head pressure

Feel faint and sometimes very faint like I am going to actually faint, but don't.

Feel weak and sometimes feel like I am not even here

Feel disconnected feeling like almost my body is disconnected from me and a feeling of numbness in my body

Legs feel heavy, wobbly, uncoordinated, unbalanced and weak.

Legs feel stiff and like the ground is rubber or moving.

Sometimes feet and lower legs feel so weak they feel like they are trembling very slightly when standing.

When standing still like in a line at store or in the shower my legs feel weak like they won't hold me up this feeling is in the lower part of my legs like from the knee down.

Standing in the shower with my eyes closed sometimes makes me feel Really off balance with my lower legs and feet

Hyper sensitive to any ground surface, even the slightest variation in the ground can kind of throw me off balance or make my feet and legs feel weird and off balance.

All my leg symptoms seem to happen when I am standing or walking

Get plenty of sleep, but sometimes feel very exhausted

Light headed / off balance

Sometimes have had free falling felling when I close my eyes.

A moving feeling like I am in a hammock

have light sensitivity where it feels like I have to shut my eyes like I am staring into the sun.

The light that affects me in this way are florescent lights. And walmart lights are the worst

Head pressure, Ear pressure that affects my hearing at times, Headaches

All these symptoms have been going on for 3 years off and on and each year seems to get worse and worse. Although I was just diagnosed with graves 1 year ago. During the first two years with my symptoms I did have my thyroid levels (well at least my TSH) tested and they were mostly normal with the occasional slightly hyper level that resolved itself.

I have seen several ENT's and have a lot of balance testing done all normal. Cardiologist with eco being normal, have had tilt table test which was inconclusive, but later told most likely do not have pots. Seen I think 7 neurologist all of which best guess was Vestibular migraine and or anxiety except one said mal de debarquement and the other most recent saying psychological dizziness. A lot saying take an SSRI which I have not done yet because even moving my head back and forth or turning around now will make me dizzy. I am not sure if my graves are causing my symptoms or something else

I used to be very active bike riding, tennis, gym, running and I can now do nothing. I can barely even go to the grocery store without my heart rate going nuts and making me feel lightheaded and if I even attempt to go to the gym and get my heart rate up, it does not come down for hours.

Does either TT or RAI stop the disease process or most importantly the symptoms? Am I at the point where my levels cannot be stabilized with methimazole?

I am kinda between a rock and a hard place. I am not exactly sure what to do from here if I want to continue the methimazole to I guess only band aid my problem or if I should do a thyroidectomy? I do not have a strong voice to begin with and do not want to lose my voice or have it be weaker.

I met with a surgeon today and he said I was the perfect candidate for total TT. And he does not recommend RAI for younger patents. He pretty much does more surgeries than anyone in my state, so pretty confident in his ability for surgery.

I asked him how long it will take to get my levels normal and he said avg is about 3 months. Is that right? I of course would want sooner, but seems like you can adjust them more quickly with surgery?

Do you need your levels to be almost spot on to what the optimal level FOR YOU is? And how do you figure out what level exactly you need to be at?

I want to be done with graves as my symptoms seem to get worse every week (I know graves autoimmune is forever), but my symptoms keep increasing. What I am most concerned with is the aftermath of the surgery and getting my levels normal and getting my life back.
 

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Wow, you really have a lot of symptoms. IMHO, a TT will get rid of them. Have you had your eyes checked for TED? RAI is not recommended if you have any eye involvement at all.

My endo feels I had Graves a long time before it was diagnosed. I think that may be why it took me longer than average to get righted around or my age, I was in my 50's.. Even during the adjustment period, I felt way better than before the last half of the thyroid was evicted. My life is very good. I am happy and calm; I had forgotten what that was like. I was a jittery mess and had random weird uncontrollable outbursts. I was convinced I needed to be admitted to a psych ward.

RAI and TT will get rid of the Graves symptoms. It sounds like you have found a surgeon that you are happy with, talk to him about your fears about the voice.

I feel for you, Graves can really wreck your life. You should curtail exercise until you get sorted out. Methimazole, used long term, can be hard on your liver.

I do not convert T3 well. I have been on a variety of medications looking for the correct one for me . I've been on 125 Levothyroxine 5 days a week and 112 Levo 2 days a week and 10 mcg of Cytomel (T3) daily for quite some time. I feel really well even though my FT3 tests in the bottom of the range.

I have been very grateful to have an open minded endo and have cultivated a great relationship with him. He is very upfront about being on top of hyper symptoms, which I do not have. Good luck to you.
 

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Discussion Starter · #3 ·
Wow, you really have a lot of symptoms. IMHO, a TT will get rid of them. Have you had your eyes checked for TED? RAI is not recommended if you have any eye involvement at all.

My endo feels I had Graves a long time before it was diagnosed. I think that may be why it took me longer than average to get righted around or my age, I was in my 50's.. Even during the adjustment period, I felt way better than before the last half of the thyroid was evicted. My life is very good. I am happy and calm; I had forgotten what that was like. I was a jittery mess and had random weird uncontrollable outbursts. I was convinced I needed to be admitted to a psych ward.

RAI and TT will get rid of the Graves symptoms. It sounds like you have found a surgeon that you are happy with, talk to him about your fears about the voice.

I feel for you, Graves can really wreck your life. You should curtail exercise until you get sorted out. Methimazole, used long term, can be hard on your liver.

I do not convert T3 well. I have been on a variety of medications looking for the correct one for me . I've been on 125 Levothyroxine 5 days a week and 112 Levo 2 days a week and 10 mcg of Cytomel (T3) daily for quite some time. I feel really well even though my FT3 tests in the bottom of the range.

I have been very grateful to have an open minded endo and have cultivated a great relationship with him. He is very upfront about being on top of hyper symptoms, which I do not have. Good luck to you.
Thank you for getting back :) I already feel better about it!

The only thing is my endo. She is just basically just strict on TSH and will only dose accordingly to that?? I do not think she will even prescribe my any t3. I guess I will see how I do on the replacement and who knows maybe I will be able to convert T3. But I am searching for a new GP who will prescribe what I need and help order the right labs and stay on top of it. I have seen pretty much every endo in my state of UT and they all pretty much prescribe off the TSH only and just prescribe T4. I have mentioned my symptoms to them and they say heart palpitations and anxiety can relate to graves, but have pretty much dismissed everything else.

I know I need a better doc..

May I ask why you take the two different doses? Did you figure that out yourself?

Glad you are feeling great and living a great life good for you!
 

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I would agree that a TT is probably in your best interest.

I do have a question regarding how often your endo was testing you while on methimazole. I was on that medication for 4.5 years, tested monthly. I have a log of all labs run since my DX and you would be amazed how poorly the doctor actually dosed the anti thyroid med's and I too was taken from total hyper to total hypo. It does certainly make one feel like they are losing their mind.

Your endo will be your biggest problem post TT. I actually went to 3 endo's post op and every one of them only wanted to dose me based off TSH. So... I started going to GP's and for the next 2 years went to 2 different GP's in order to get replacement medications. Eventually I asked for a trial of Cytomel because my FT-4 was not converting to enough FT-3. I struggled adjusting to cytomel but eventually my body accepted it. In reality it took me 2.5 years post TT, knowing alot about thyroid replacement dosing and the importance of FT-4 and FT-3 to finally find my "happy place". I probably could have done it sooner but I was very slow and deliberate with every dose change I made and finding a doctor to supply my replacement dose was difficult as I don't have any TSH when my labs are in the 3/4 range due to stimulating antibodies that apparently are still there 10 years later. My issue was fatigue and I found out that I was low in Ferritin, Vitamin D which contributed to my fatigue.

Get into the habit of asking for copies of all labs run on you - ever take the nurses "your labs are all normal" as truth. "normal" means "in range" and in range does not necessarily mean in "your range"
 

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I also went to three endos before I found one that would listen to me.

Initially, he was content to test only TSH; maybe that is the standard protocol. I asked him to humor me and test FT3 and FT4 so we could get the total picture because before surgery many complete thyroid panels were run. My insurance covered it, and I asked him what harm it would do to test them. If they were "normal" or in range I would not pester him much about it , any further, which I am sure I would have but was glad not to have to do that!

The FT3 came back below range on the first test. We discussed options after that. I could see he was hesitant to add cytomel, so I went along with his first suggestion which was to add more T4 and re-test.. We did this a couple of times and finally added cytomel and adjusted the T4 dosage a bit. I have to admit I was a bit afraid to take the cytomel and added it very slowly by taking half a pill a day for a week and slowly working up to the 10 mcg daily. Anyway, even adding the cytomel, I do not hit half of the range but I feel great. My stamina and cognition are much better than they were.

I take the two different doses because 125 mcg of Levo and 10 mcg of Cytomel were too much for me. My heart was racing on that combo. My endo hit on the perfect combo next. My thought was to lower the cytomel but he suggested lowering the T4 two days per week. It works really well.

Some people, and maybe you will be one, do very well on T4. Don't get too worried about specific replacements yet. Get through the surgery and see what happens. In the mean time, educate your self on the process so you will be able to have an informed discussion with your doctor and be able to work on a relationship that will help you partner with your doctor to have you feeling well again..

My endo does not prescribe cytomel often. I had to work to make him understand that I was not looking for a weight loss med etc. that my goal was to be functional at home and at work, not fall asleep in the afternoon, etc., when the lab work showed that the FT3 was in the basement, we had a point to start at. I keep a record of all the lab work and know where I feel the best.
 
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Discussion Starter · #6 ·
I would agree that a TT is probably in your best interest.

I do have a question regarding how often your endo was testing you while on methimazole. I was on that medication for 4.5 years, tested monthly. I have a log of all labs run since my DX and you would be amazed how poorly the doctor actually dosed the anti thyroid med's and I too was taken from total hyper to total hypo. It does certainly make one feel like they are losing their mind.

Your endo will be your biggest problem post TT. I actually went to 3 endo's post op and every one of them only wanted to dose me based off TSH. So... I started going to GP's and for the next 2 years went to 2 different GP's in order to get replacement medications. Eventually I asked for a trial of Cytomel because my FT-4 was not converting to enough FT-3. I struggled adjusting to cytomel but eventually my body accepted it. In reality it took me 2.5 years post TT, knowing alot about thyroid replacement dosing and the importance of FT-4 and FT-3 to finally find my "happy place". I probably could have done it sooner but I was very slow and deliberate with every dose change I made and finding a doctor to supply my replacement dose was difficult as I don't have any TSH when my labs are in the 3/4 range due to stimulating antibodies that apparently are still there 10 years later. My issue was fatigue and I found out that I was low in Ferritin, Vitamin D which contributed to my fatigue.

Get into the habit of asking for copies of all labs run on you - ever take the nurses "your labs are all normal" as truth. "normal" means "in range" and in range does not necessarily mean in "your range"
Thank you for sharing and the info this is great!

Well I have my labs done every month. Mostly Free T4 and TSH and usually a total T3

I will list the last 4 I have had and I actually just had one done on APR 1st, but have not had the results back yet. These labs are basically from me calling the doc office saying I feel horrible and would like labs

JAN 12 2016:

TSH - 0.25 , Range 0.40-4.50

FREE T4 - 1.5 , Range 0.8-1.8

Total T3 - 101 , Range 76-181

Also had a FERRITIN taken this day, that was - FERRITIN - 131, Range 20-345

2/2/16

TSH - 1.15 ,Range 0.40-4.50

FREE T4 - 1.4 , Range 0.8-1.8

Total T3 - 97 , Range 76-181

2/18/16

TSH - 2.28 ,Range 0.40-4.50

FREE T4 - 1.4 , Range 0.8-1.8

FREE T3 - 2.8 , Range 2.3-4.2

TSI 162, Range <140 % baseline

3/8/16

TSH - 4.11 ,Range 0.40-4.50

FREE T4 - 1.3 , Range 0.8-1.8

Total T3 - 88 , Range 76-181

CORTISOL, TOTAL also tested and a little high told not to worry at all. - 24.8 , range 3-22

I was on 10mc daily since like May 2015 and in Jan 2016 was starting to feel pretty hyper again and in Feb was told to take 15mc 1 day and 10mc the other day and so forth.

My levels are more normalized now and I am more symptomatic than ever, I am not sure why and am not sure is the graves is just taking its toll somehow or if the inflammation from the graves itself is doing something

How will I know if I am converting T3 or not?

You say your levels of TSH are not there if you are ¾ in range of T3? So for example if my FREE T3 range is 0.8 - 1.8 , I would want to be over like 1.3?

Yeah I have an apt with a GP and think that is where I am going to have to go as well cuz I have lethally met with I think 6 endos in my state and there are only like a total of 10 here

.

Sorry for asking questions, just great actually learning and speaking to people with Real info! :)
 

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Discussion Starter · #7 ·
I also went to three endos before I found one that would listen to me.

Initially, he was content to test only TSH; maybe that is the standard protocol. I asked him to humor me and test FT3 and FT4 so we could get the total picture because before surgery many complete thyroid panels were run. My insurance covered it, and I asked him what harm it would do to test them. If they were "normal" or in range I would not pester him much about it , any further, which I am sure I would have but was glad not to have to do that!

The FT3 came back below range on the first test. We discussed options after that. I could see he was hesitant to add cytomel, so I went along with his first suggestion which was to add more T4 and re-test.. We did this a couple of times and finally added cytomel and adjusted the T4 dosage a bit. I have to admit I was a bit afraid to take the cytomel and added it very slowly by taking half a pill a day for a week and slowly working up to the 10 mcg daily. Anyway, even adding the cytomel, I do not hit half of the range but I feel great. My stamina and cognition are much better than they were.

I take the two different doses because 125 mcg of Levo and 10 mcg of Cytomel were too much for me. My heart was racing on that combo. My endo hit on the perfect combo next. My thought was to lower the cytomel but he suggested lowering the T4 two days per week. It works really well.

Some people, and maybe you will be one, do very well on T4. Don't get too worried about specific replacements yet. Get through the surgery and see what happens. In the mean time, educate your self on the process so you will be able to have an informed discussion with your doctor and be able to work on a relationship that will help you partner with your doctor to have you feeling well again..

My endo does not prescribe cytomel often. I had to work to make him understand that I was not looking for a weight loss med etc. that my goal was to be functional at home and at work, not fall asleep in the afternoon, etc., when the lab work showed that the FT3 was in the basement, we had a point to start at. I keep a record of all the lab work and know where I feel the best.
This is Great advice and info thank you! I will be learning all that I can for sure. Thank you again for the help.
 

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My thought was to lower the cytomel but he suggested lowering the T4 two days per week. It works really well.
Webster2,

Thanks for this tip - never thought of it that way. I notice my FT-3 tips a bit high for me at least 1x a year and I always cut back on the Cytomel. I'm going to try this next time.

Sorry for the hi-jack thyguy.
 

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How will I know if I am converting T3 or not?
Look at the pattern in your labs. As your TSH rises your total or FT-3 fall. Your FT-4 holds consistent. This is early indication you are in need of a dose adjustment down, maybe 2.5mcg. I dialed down into the 2.5mcg dose for a short period of time. \

Antibodies are important for you to ask about, TSO is an inflammation marker when you have TSI.

These labs are basically from me calling the doc office saying I feel horrible and would like labs
How did you feel with each lab? You should put this info in your signature... Click on your log in name, Profile, edit profile and on the left is signature.

TSH can lag up to 6 weeks and is not a good indicator for dosing. It is best to dose your self by FT-4 and FT-3 labs.

You are diagnosed Graves disease. Conversion is not something you should be concerning yourself quite yet. No doctor will ever prescribe Cytomel to address not enough conversion. That is a post surgical and "replacement dose" concern.

Have you had an ultrasound and Thyroglobulin antibodies tests? RAI uptake?
 

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Discussion Starter · #10 ·
Look at the pattern in your labs. As your TSH rises your total or FT-3 fall. Your FT-4 holds consistent. This is early indication you are in need of a dose adjustment down, maybe 2.5mcg. I dialed down into the 2.5mcg dose for a short period of time. \

Antibodies are important for you to ask about, TSO is an inflammation marker when you have TSI.

How did you feel with each lab? You should put this info in your signature... Click on your log in name, Profile, edit profile and on the left is signature.

TSH can lag up to 6 weeks and is not a good indicator for dosing. It is best to dose your self by FT-4 and FT-3 labs.

You are diagnosed Graves disease. Conversion is not something you should be concerning yourself quite yet. No doctor will ever prescribe Cytomel to address not enough conversion. That is a post surgical and "replacement dose" concern.

Have you had an ultrasound and Thyroglobulin antibodies tests? RAI uptake?
Alright thanks for this info it all really helps SO MUCH :)

As far as how I feel with my labs I have pretty much felt horrible with each and I remember the one in Jan feeling particularity Hyper, Feb was bad as well, but I feel worse and worse every month. and in this last month my heart and anxiousness are at an all time high, so I guess I will mark when I get my APR 1st labs back and do this from now on. Thank you for all the tips and will be editing my signature

I know I do not need any T3 now, just trying to really be prepared post surgery. Still confused on how to know if I will be converting T3 lol. Sorry just super new to all this lingo I guess

I did have RAI uptake APR 2015 and did confirm Graves. Do not know the exact numbers? I have had a couple ultrasounds of my thyroid, usually one per year since 2010 and 2 last year in 2015. I started having ultrasounds on my thyroid in 2010 because I used to have very small nodule (first discovered 2010) and when they went to rescan this time I believe Feb 2016, they could not see it anymore and said my whole thyroid was all inflamed looking now.

Thank you for all the help :)
 

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As far as you feeling bad then worse - as T3 or FT-3 fall you will feel poorly. Your issue is with Graves, you are in a balancing act and your thyroid is filled with nodules and your body is releasing more than needed thyroid hormone which you are trying to slow down with your anti thyroid med's.

Have you considered a "permanent" solution such as surgery or has your doctor offered? I strongly suggest surgical removal over RAI. One and done with surgery - you are rendered hypo almost immediately and it is easier to stabilize on replacement. If you get a referral to a surgeon they always agree to remove - and insurance never declines a surgeon's request ( per my surgeon).

Still confused on how to know if I will be converting T3 lol.
It's easy - post surgery or RAI you will need to insist they run both FT-4 and FT-3 at every lab. Both should be in the 1/2 -3/4 of range ( closer to 3/4). If after several months you are not reaching those numbers, you will need to add Cytomel. If, however you begin on a NTD ( natural dissected thyroid) such as Armour or Westhyroid your labs would naturally be higher on FT-3 as the medication has a higher concentration of T3 hormone.
 

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Discussion Starter · #12 ·
As far as you feeling bad then worse - as T3 or FT-3 fall you will feel poorly. Your issue is with Graves, you are in a balancing act and your thyroid is filled with nodules and your body is releasing more than needed thyroid hormone which you are trying to slow down with your anti thyroid med's.

Have you considered a "permanent" solution such as surgery or has your doctor offered? I strongly suggest surgical removal over RAI. One and done with surgery - you are rendered hypo almost immediately and it is easier to stabilize on replacement. If you get a referral to a surgeon they always agree to remove - and insurance never declines a surgeon's request ( per my surgeon).

It's easy - post surgery or RAI you will need to insist they run both FT-4 and FT-3 at every lab. Both should be in the 1/2 -3/4 of range ( closer to 3/4). If after several months you are not reaching those numbers, you will need to add Cytomel. If, however you begin on a NTD ( natural dissected thyroid) such as Armour or Westhyroid your labs would naturally be higher on FT-3 as the medication has a higher concentration of T3 hormone.
Alright making a lot more sense about the T3 thanks.

My T3 and T4 those past 3 months has fell, but T4 only from 1.5 to 1.3.

Yeah I am scheduled for total TT the 21st of April and trying to educate myself as much as I can so I can be on top of it post surgery so I can get my levels to normal as fast as I can. Nervous about it, but really hoping it will help

The info here is great thanks
 

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I re-read your post about that lack of confidence in your endo only wanting to test TSH. You might ask your surgeon for a referral. That was how I finally ended up with the one I had.

Your plan to educate yourself is a very good one. I might add v-neck T-shirts will be a good idea to have after surgery. If you are at all prone to nausea, let the anesthesiologist know, they can fix you right up. Good luck!
 
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