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New Graves' Disease Victim here!


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#1 RobW

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Posted 20 February 2011 - 09:45 AM

**update 12/24/2016**
I'm still in New Hampshire, 29 years old and I'm doing excellent. Last thyroid test was normal and I try my best to eat right and exercise.

**UPDATED!**

I'm 26 now and living in Manchester NH. I've been on the block & replace treatment therapy for almost 5 years I believe... I'm currently taking 75mcg levothyroxin in the morning, and 10mg methimazole in the evening - once daily. My goiter has since disappeared and has returned to its almost normal size last time we checked.

For those who are experiencing the same issue, please read through this to see what I've gone through. This thread has been a place for me to visit for the last few years and I try to keep it as updated as possible. As always, feel free to reach out to me via PM if you have any questions or would just like to talk. I know how Graves' Disease can feel like it's going to take over your life, but you can pull through! The light IS at the end of the tunnel :)

-------------------

Hi guys, my name is Rob, I am a 23 year old male and I have Graves' - I'm currently living in Kansas City. I've been under treatment for approximately a year by taking Methimazole (20mg) and Levothyroxin (88mcg). I used to take Beta blockers but my blood pressure kind of went down and was told I don't need to (but I could if I wanted - chose not to as it's one less pill I have to take daily). I also suffer from nearly all side effects of Graves', such as Stroke-level blood pressure, high heart rate, Graves' Dermopathy, Graves' Ophthalmopathy, Anxiety (diagnosed), Depression (not diagnosed, but I just don't ever feel like doing anything since under treatment) and bipolarity (self diagnosed, since I've been told I have frequent mood changes). Since treatment, my anxiety has pretty much gone away but I still suffer from depression and bipolar problems. I'm even scared to lose my girlfriend because of my Graves' Disease and inability to completely control my mood at times.

I do still have a goiter, which has shrunk a little since beginning of treatment, but I still suffer from the Graves' Dermopathy and Graves' Ophthalmopathy but the Graves' Ophthalmopathy is mild as I'm able to close my eyes completely. It's rare that I get dry-eye unless allergy-related. The Graves' Dermopathy is on my left shin and is embarrassing and I've had it for years, even before being diagnosed. Dermatologists didn't even know what my skin problem was. It's sad that only a year ago when I got my eyes checked, the ophthalmologist told me I had Graves' just by seeing my goiter and my eye problems. From there I immediately went to the doctor and seen a specialist. I also feel it's important to note that I used to smoke for around 5-6 years and recently quit about 8 months ago!

Anyhow, I just wanted to register and read to see how many other people share the same issues as I have. It's unfortunate that there's no cure to the autoimmune disease (any of them), but I guess we just have to live with it, right?

If you have any questions, please feel free to ask. I'll try to answer asap!

PS: for users under treatment, have you noticed any sort of short term or long term memory loss? I feel that I can't remember some events without having to be reminded by my friends and it's embarrassing. Even things my girlfriend says to me I tend to forget, even though I really try to remember things she says. She should be lucky I can remember her birthday and favorite color, though!

Side note: I've done some working out and noticed I'm not really able to lose weight. I've gained about 25lbs since treatment and endocrinologist says my thyroid levels are fine while on thyroid hormone replacement therapy (levothyroxin). I can't seem to burn fat or build muscle, is this a cause for concern or am I not trying hard enough/eating the right foods?

Edited by RobW, 25 December 2016 - 04:38 AM.

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#2 Andros

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Posted 20 February 2011 - 08:46 PM

Hi guys, my name is Rob, I am a 23 year old male and I have Graves' in Kansas City. I've been under treatment for approximately a year now by taking Methimazole (20mg) and Levothyroxin (88mcg). I used to take Beta blockers but my blood pressure kind of went down and was told I don't need to (but I could if I wanted - chose not to as it's one less pill I have to take daily). I also suffer from nearly all side effects of Graves', such as Stroke-level blood pressure, high heart rate, Graves' Dermopathy, Graves' Ophthalmopathy, Anxiety (diagnosed), Depression (not diagnosed, but I just don't ever feel like doing anything since under treatment) and bipolarity (self diagnosed, since I've been told I have frequent mood changes). Since treatment, my anxiety has pretty much gone away but I still suffer from depression and bipolar problems. I'm even scared to lose my girlfriend because of my Graves' Disease and inability to completely control my mood at times.

I do still have a goiter, which has shrunk a little since beginning of treatment, but I still suffer from the Graves' Dermopathy and Graves' Ophthalmopathy but the Graves' Ophthalmopathy is mild as I'm able to close my eyes completely. It's rare that I get dry-eye unless allergy-related. The Graves' Dermopathy is on my left shin and is embarrassing and I've had it for years, even before being diagnosed. Dermatologists didn't even know what my skin problem was. It's sad that only a year ago when I got my eyes checked, the ophthalmologist told me I had Graves' just by seeing my goiter and my eye problems. From there I immediately went to the doctor and seen a specialist. I also feel it's important to note that I used to smoke for around 5-6 years and recently quit about 8 months ago!

Anyhow, I just wanted to register and read to see how many other people share the same issues as I have. It's unfortunate that there's no cure to the autoimmune disease (any of them), but I guess we just have to live with it, right?

If you have any questions, please feel free to ask. I'll try to answer asap!

PS: for users under treatment, have you noticed any sort of short term or long term memory loss? I feel that I can't remember some events without having to be reminded by my friends and it's embarrassing. Even things my girlfriend says to me I tend to forget, even though I really try to remember things she says. She should be lucky I can remember her birthday and favorite color, though!

Side note: I've done some working out and noticed I'm not really able to lose weight. I've gained about 25lbs since treatment and endocrinologist says my thyroid levels are fine while on thyroid hormone replacement therapy (levothyroxin). I can't seem to burn fat or build muscle, is this a cause for concern or am I not trying hard enough/eating the right foods?


Hi there, RobW! Welcome!!! So tell me; are you considering a permanent fix?

Have you had RAIU (radioactive uptake scan?)

I believe you are the only one on the board right now who is on "Block and Replace!" So few doctors know how to do this much less have even heard about it.

You don't sound like things are going too well so perhaps it is time to change directions? Surgery or RAI???

I was in very advanced stages much like yourself but maybe a bit worse as I did have a thyroid storm. I decided to do the RAI and now I wonder why I messed around for more than a year with antithyroid meds which just made me sicker but in another way.

You may find this interesting..........
http://www.psycheduc...ntroduction.htm

I and others had a weight problem while hyperthyroid and yes; the memory. OMG!! Sometimes I did not remember where I was driving to. Oh, yes...........it is true!!!

So, anyhow.............let us know about RAIU. It is always good to have this scan to make sure there is no cancer.

Graves' and Hashi's cancer
http://www.thyroidma...18-cancothr.htm

men more likely to have cancer than women
http://www.umm.edu/endocrin/thytum.htm

Edited by Andros, 21 February 2011 - 08:27 PM.

The above is opinion only, not medical advice. No doctor degrees here. Please seek the advice of a qualified physician........ Andros :D

Graves' Disease, Lupus (Systemic & Discoid), Sjogren's and old age. ;) Armour........3 1/2 grains per day.

Welcome all members! Thank you everyone for participating on this board, for helping other posters and for sharing your experiences and wisdom!

"We Rock" 004-1-1.jpg


#3 RobW

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Posted 20 February 2011 - 09:44 PM

Hi Andros,

If by RAIU you mean by taking a radioactive iodine pill and being scanned by some machine, then yes I did that at beginning of treatment. I'm glad I'm not losing my mind over this thinking I was the only one with the mental effects hah. I used to have thyroid storms on a regular basis before treatment, but would never know what caused it. I did at one point of time figure out it was caused by eating foods with too much salt/iodine and would make me overheat to the point I felt like I was going to pass out. Thank goodness that's all done and over with. Also with the methimazole, the doctor had me on 40mg to start with a while back but I would get horrible cramps out of nowhere - the ones that would drop a person to the ground, especially in the back of my legs.

I was told by another endocrinologist here in KC (mine is in NW Arkansas) that the "block and replace" method is no longer recommended but failed to give me a reason why, perhaps you would be able to tell me why?

As far as RAI or Surgery, I'm not sure yet. My current endocrinologist thinks we're doing good in terms of putting the thyroid into remission as he says right now we're just trying to shrink the thyroid and that the amount of methimazole I'm on, it'll take some time but it knocked it out hence the thyroid replacement. I had a thyroid test (Thyroid stimulating, T3 Free, Thyroxine Free) and he says it's looking good, though, I don't have the numbers myself (perhaps I can get them from the lab somehow).

I love the article about thyroid levels being too high causes anxiety, but too low causes depression. I'm wondering if this means that by being in the lower-middle of this range causes depression with a hint of anxiety, because I don't certainly feel like I have anxiety attacks anymore as when I was on propranolol I couldn't even go to Wal-Mart. Now I'm more than fine going to a public place and meeting random people, or going to my friends. Perhaps propranolol is more to blame for anxiety in patients who take it (because I never had any anxiety issues until I took it). However, there are times when I hear too much background noise, say at a bar or whatever, I start to feel anxious but I have pretty much learned to cope with it and the feeling goes away :)

My next appointment is in April I believe and perhaps I will see about another RAIU scan? Considering it's been a while?

Thanks for the reply!

#4 Andros

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Posted 21 February 2011 - 08:33 PM

Hi Andros,

If by RAIU you mean by taking a radioactive iodine pill and being scanned by some machine, then yes I did that at beginning of treatment. I'm glad I'm not losing my mind over this thinking I was the only one with the mental effects hah. I used to have thyroid storms on a regular basis before treatment, but would never know what caused it. I did at one point of time figure out it was caused by eating foods with too much salt/iodine and would make me overheat to the point I felt like I was going to pass out. Thank goodness that's all done and over with. Also with the methimazole, the doctor had me on 40mg to start with a while back but I would get horrible cramps out of nowhere - the ones that would drop a person to the ground, especially in the back of my legs.

I was told by another endocrinologist here in KC (mine is in NW Arkansas) that the "block and replace" method is no longer recommended but failed to give me a reason why, perhaps you would be able to tell me why?

As far as RAI or Surgery, I'm not sure yet. My current endocrinologist thinks we're doing good in terms of putting the thyroid into remission as he says right now we're just trying to shrink the thyroid and that the amount of methimazole I'm on, it'll take some time but it knocked it out hence the thyroid replacement. I had a thyroid test (Thyroid stimulating, T3 Free, Thyroxine Free) and he says it's looking good, though, I don't have the numbers myself (perhaps I can get them from the lab somehow).

I love the article about thyroid levels being too high causes anxiety, but too low causes depression. I'm wondering if this means that by being in the lower-middle of this range causes depression with a hint of anxiety, because I don't certainly feel like I have anxiety attacks anymore as when I was on propranolol I couldn't even go to Wal-Mart. Now I'm more than fine going to a public place and meeting random people, or going to my friends. Perhaps propranolol is more to blame for anxiety in patients who take it (because I never had any anxiety issues until I took it). However, there are times when I hear too much background noise, say at a bar or whatever, I start to feel anxious but I have pretty much learned to cope with it and the feeling goes away :)

My next appointment is in April I believe and perhaps I will see about another RAIU scan? Considering it's been a while?

Thanks for the reply!


If you had the RAIU a year ago, I doubt there would be any advantage to redoing it now. I wonder what the results of that scan were though? Inquiring minds always like to know.

I have never heard that block and replace is by the wayside. I just don't think doctors are interested in doing that much work on behalf of their patients.

It would be very interesting to see your recent lab results with the ranges intact. Maybe you could get a copy?

And yes; iodine can tip one over the edge to thyroid storm!

Well; the main thing here is how do you feel? Your numbers may look good to the doctor but do you feel good and are you functioning in a manner acceptable to you? This is what counts.

I also love that article. It validates "many" and validation is important.

The above is opinion only, not medical advice. No doctor degrees here. Please seek the advice of a qualified physician........ Andros :D

Graves' Disease, Lupus (Systemic & Discoid), Sjogren's and old age. ;) Armour........3 1/2 grains per day.

Welcome all members! Thank you everyone for participating on this board, for helping other posters and for sharing your experiences and wisdom!

"We Rock" 004-1-1.jpg


#5 Lovlkn

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Posted 22 February 2011 - 01:04 AM

Block and Replace- you are one of the lucky ones, that by far is your best shot at remission.

My current endocrinologist thinks we're doing good in terms of putting the thyroid into remission as he says right now we're just trying to shrink the thyroid and that the amount of methimazole I'm on, it'll take some time but it knocked it out hence the thyroid replacement. I had a thyroid test (Thyroid stimulating, T3 Free, Thyroxine Free) and he says it's looking good, though, I don't have the numbers myself (perhaps I can get them from the lab somehow).

Keep this endocrinologist and follow his instructions. Ask your doctors office for the lab results and they should give them to you- keep a log with lab results and current doses.

Depression can run most likely with moving thyroid levels - I went crazy when I was coming down from hyper and my good doctor took me from full blown hyper to hypo in 3 months -I had to go see a therapist because I went temporarily mad -seriously, everything and everybody bothered me but that feeling went away shortly after I got stabilized.
Free T-4 and Free T-3 are absolutely necessary to properly dose yourself.
My experience is that 1/2 - 3/4 of range is your goal for optimal treatment

My Journey... 7 years to receive a diagnosis. TT 2004 after 4.5 years on Tapazole that had to be adjusted monthly - endo ran labs every 4 weeks. Remission was never going to happen for me so I opted for surgery to remove. Final DX by surgeon was Hashitoxicosis, TPO antibodies over 2000 and TSI 316% within the year prior to surgery. I never had a ultrasound or any lab testing to rule out cancer - pathology was negative. Post surgery I was kept hypo for many years - until I figured out how to dose my self, relying on where I fell in the FT-4 and FT-3 labs. I run TSH below range due to positive TBII antibodies. Horrible time adjusting to addition of Cytomel = patience pays off when adding this drug to the mix.

The happy ending ---> Stable dose since 1/10 Unithroid 125mcg, Cytomel 12.5mcg - labs I can live with.

None of the information on ThyroidBoards.com is intended to diagnose, treat, cure or prevent any disease. Information shared is based on my personal experiences and should not be considered medical advice. Please consult a physician before adjusting any medication.

#6 RobW

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Posted 24 February 2011 - 01:52 AM

Block and Replace- you are one of the lucky ones, that by far is your best shot at remission.

Keep this endocrinologist and follow his instructions. Ask your doctors office for the lab results and they should give them to you- keep a log with lab results and current doses.

Depression can run most likely with moving thyroid levels - I went crazy when I was coming down from hyper and my good doctor took me from full blown hyper to hypo in 3 months -I had to go see a therapist because I went temporarily mad -seriously, everything and everybody bothered me but that feeling went away shortly after I got stabilized.


Ah, yes I've felt nearly exactly like that when I went hypo. Apparently at one point of time I had no thyroid hormone in my body at all :ashamed0001:

I'll try to get those lab results soon, thanks guys.

#7 Andros

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Posted 24 February 2011 - 02:57 PM

Ah, yes I've felt nearly exactly like that when I went hypo. Apparently at one point of time I had no thyroid hormone in my body at all :ashamed0001:

I'll try to get those lab results soon, thanks guys.


Looking forward to results and ranges.

The above is opinion only, not medical advice. No doctor degrees here. Please seek the advice of a qualified physician........ Andros :D

Graves' Disease, Lupus (Systemic & Discoid), Sjogren's and old age. ;) Armour........3 1/2 grains per day.

Welcome all members! Thank you everyone for participating on this board, for helping other posters and for sharing your experiences and wisdom!

"We Rock" 004-1-1.jpg


#8 RobW

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Posted 07 May 2011 - 11:12 PM

Hi guys, sorry it took so long to get this - I've been ridiculously busy!

So I got the results and ranges here, let me know what you think. Also had a TSH, T3, T4 test taken on 5/5, waiting for doctor to forward results on that as well.

2/10/2010
------------
TSH (0.34-4.82 uIU/ml): <0.01 (!v)
T4 FREE (0.77-1.61 ng/dL): 1.39 (!^)
T3 (0.7-1.9 ug/dl): N/A
T3 FREE (2.3-4.2 pg/mL): N/A

4/16/2010
------------
TSH (0.34-4.82 uIU/ml): <0.01 (!)
T4 FREE (0.77-1.61 ng/dL): 2.35 (!^)
T3 (0.7-1.9 ug/dl): 2.1 (!^)
T3 FREE (2.3-4.2 pg/mL): N/A

7/8/2010
------------
TSH (0.34-4.82 uIU/ml): <0.01 (!)
T4 FREE (0.77-1.61 ng/dL): 2.81 (!^)
T3 (0.7-1.9 ug/dl): 1.5
T3 FREE (2.3-4.2 pg/mL): N/A

8/16/2010
------------
TSH (0.34-4.82 uIU/ml): N/A
T4 FREE (0.77-1.61 ng/dL): 1.39
T3 (0.7-1.9 ug/dl): 1.4
T3 FREE (2.3-4.2 pg/mL): N/A

1/24/2011
------------
TSH (0.34-4.82 uIU/ml): <0.01 (!)
T4 FREE (0.77-1.61 ng/dL): 1.06
T3 (0.7-1.9 ug/dl): N/A
T3 FREE (2.3-4.2 pg/mL): 3.2

5/5/2011
------------
TSH (0.34-4.82 uIU/ml): <0.01 (!)
T4 FREE (0.77-1.61 ng/dL): 1.07
T3 (0.7-1.9 ug/dl): 1.3
T3 FREE (2.3-4.2 pg/mL): N/A

Edited by RobW, 14 May 2011 - 07:37 PM.


#9 Andros

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Posted 08 May 2011 - 05:42 PM

Hi guys, my name is Rob, I am a 23 year old male and I have Graves' in Kansas City. I've been under treatment for approximately a year now by taking Methimazole (20mg) and Levothyroxin (88mcg). I used to take Beta blockers but my blood pressure kind of went down and was told I don't need to (but I could if I wanted - chose not to as it's one less pill I have to take daily). I also suffer from nearly all side effects of Graves', such as Stroke-level blood pressure, high heart rate, Graves' Dermopathy, Graves' Ophthalmopathy, Anxiety (diagnosed), Depression (not diagnosed, but I just don't ever feel like doing anything since under treatment) and bipolarity (self diagnosed, since I've been told I have frequent mood changes). Since treatment, my anxiety has pretty much gone away but I still suffer from depression and bipolar problems. I'm even scared to lose my girlfriend because of my Graves' Disease and inability to completely control my mood at times.

I do still have a goiter, which has shrunk a little since beginning of treatment, but I still suffer from the Graves' Dermopathy and Graves' Ophthalmopathy but the Graves' Ophthalmopathy is mild as I'm able to close my eyes completely. It's rare that I get dry-eye unless allergy-related. The Graves' Dermopathy is on my left shin and is embarrassing and I've had it for years, even before being diagnosed. Dermatologists didn't even know what my skin problem was. It's sad that only a year ago when I got my eyes checked, the ophthalmologist told me I had Graves' just by seeing my goiter and my eye problems. From there I immediately went to the doctor and seen a specialist. I also feel it's important to note that I used to smoke for around 5-6 years and recently quit about 8 months ago!

Anyhow, I just wanted to register and read to see how many other people share the same issues as I have. It's unfortunate that there's no cure to the autoimmune disease (any of them), but I guess we just have to live with it, right?

If you have any questions, please feel free to ask. I'll try to answer asap!

PS: for users under treatment, have you noticed any sort of short term or long term memory loss? I feel that I can't remember some events without having to be reminded by my friends and it's embarrassing. Even things my girlfriend says to me I tend to forget, even though I really try to remember things she says. She should be lucky I can remember her birthday and favorite color, though!

Side note: I've done some working out and noticed I'm not really able to lose weight. I've gained about 25lbs since treatment and endocrinologist says my thyroid levels are fine while on thyroid hormone replacement therapy (levothyroxin). I can't seem to burn fat or build muscle, is this a cause for concern or am I not trying hard enough/eating the right foods?


Hi there Rob. Welcome!

Posted Image

Sorry for the reason that brought you here! Have you not been offered the option of RAI (radioactive isotope) or ablation (surgical?)

You are in the advanced stages and it is taking a terrible toll on your body.

You will find this of interest.
bipolar
http://www.psycheduc...ntroduction.htm

Many of us with Graves' have suffered from psychosis and suicidal ideation. Raise of the hand here! I was in very advanced stage of Graves'. Had a thyroid storm.

Have you had RAIU (radioactive uptake scan) or a sonogram?

It is interesting that your doc has you on "block and replace"; so few doctors know to do this.

There is no cure for autoimmune but you can stop the progression of Graves' in it's tracks by getting rid of the thyroid. I sure am glad I did and so are many others here.

And by the way...........................

men more likely to have cancer than women
http://www.umm.edu/endocrin/thytum.htm

Has your doctor run any of these tests?

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.
http://www.medicineo...obulin/TSI.html

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

The above is opinion only, not medical advice. No doctor degrees here. Please seek the advice of a qualified physician........ Andros :D

Graves' Disease, Lupus (Systemic & Discoid), Sjogren's and old age. ;) Armour........3 1/2 grains per day.

Welcome all members! Thank you everyone for participating on this board, for helping other posters and for sharing your experiences and wisdom!

"We Rock" 004-1-1.jpg


#10 RobW

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Posted 14 May 2011 - 10:15 AM

Hi guys, just a bump to let you know I updated my latest lab results. Hoping my TSH levels will come up some time soon :/

#11 Andros

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Posted 14 May 2011 - 02:04 PM

Hi guys, just a bump to let you know I updated my latest lab results. Hoping my TSH levels will come up some time soon :/


Hi, Rob! What does the TBD mean here? T3 FREE (2.3-4.2 pg/mL): TBD
(to be determined?)

TSH barely detectable. Are you on antithyroid meds and beta-blocker? How are you feeling? You really appear to be in advanced hyper state.

Good to hear from you.

The above is opinion only, not medical advice. No doctor degrees here. Please seek the advice of a qualified physician........ Andros :D

Graves' Disease, Lupus (Systemic & Discoid), Sjogren's and old age. ;) Armour........3 1/2 grains per day.

Welcome all members! Thank you everyone for participating on this board, for helping other posters and for sharing your experiences and wisdom!

"We Rock" 004-1-1.jpg


#12 trulyDee

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Posted 14 May 2011 - 05:03 PM

I am also a new victim of GD. Diagnosed March 1st.

I would like to know if anyone would talk with me on the phone about this. It's always good to touch base with someone who "knows".

I am a single female, 44
From Vestal, NY

#13 Andros

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Posted 14 May 2011 - 05:51 PM

I am also a new victim of GD. Diagnosed March 1st.

I would like to know if anyone would talk with me on the phone about this. It's always good to touch base with someone who "knows".

I am a single female, 44
From Vestal, NY


Welcome to the board! I am sorry to hear that you have Graves'. Are you on antithyroid medicine and a betablocker?

If so, what and how much.

Do you have a goiter, exophthalmos, pretibial myxedema and thyrotoxicosis?

Have you had any of these antibodies' tests?

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

You can look this stuff up here and more.........
http://www.labtestsonline.org/

Have you had RAIU (radioactive uptake scan) and if so, what were the results and the rate of uptake?

The above is opinion only, not medical advice. No doctor degrees here. Please seek the advice of a qualified physician........ Andros :D

Graves' Disease, Lupus (Systemic & Discoid), Sjogren's and old age. ;) Armour........3 1/2 grains per day.

Welcome all members! Thank you everyone for participating on this board, for helping other posters and for sharing your experiences and wisdom!

"We Rock" 004-1-1.jpg


#14 RobW

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Posted 14 May 2011 - 07:38 PM

Hi, Rob! What does the TBD mean here? T3 FREE (2.3-4.2 pg/mL): TBD
(to be determined?)

TSH barely detectable. Are you on antithyroid meds and beta-blocker? How are you feeling? You really appear to be in advanced hyper state.

Good to hear from you.


Sorry, I meant to replace that with N/A - they didn't test for it. I'm on methimazole 20mg but no longer on propranolol (been off it for about 8 months). I've been feeling good lately, doctor bumped me up from 88mcg to 100mcg synthroid.

#15 Andros

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Posted 14 May 2011 - 08:09 PM

Sorry, I meant to replace that with N/A - they didn't test for it. I'm on methimazole 20mg but no longer on propranolol (been off it for about 8 months). I've been feeling good lately, doctor bumped me up from 88mcg to 100mcg synthroid.


I am glad you feel better. Do you split the dose of Methimazole or take it all at one time?

The above is opinion only, not medical advice. No doctor degrees here. Please seek the advice of a qualified physician........ Andros :D

Graves' Disease, Lupus (Systemic & Discoid), Sjogren's and old age. ;) Armour........3 1/2 grains per day.

Welcome all members! Thank you everyone for participating on this board, for helping other posters and for sharing your experiences and wisdom!

"We Rock" 004-1-1.jpg


#16 RobW

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Posted 14 May 2011 - 10:36 PM

Take it all at once. In the mornings (or when I wake up more specifically) I take the synthroid and then at around 5-6pm I'll take the methimazole.. Nobody ever told me otherwise so I'm just assuming I'm doing it right o,0 Only thing I don't like is that it seems like the methimazole is causing my digestive system to slow down as in I'm not even regular, but the doctor said that this doesn't cause it... I'm pretty sure it is causing it because I had no problems in the past. Same thing with my infrequent dry mouth/eyes, which he was trying to tell me is sjogrens.. Doesn't make sense because it's (1) infrequent, but (2) when it does happen, happens after I eat food or drink water.

#17 trulyDee

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Posted 18 September 2011 - 04:14 PM

Hi Rob

I'm sorry I didn't get back to you sooner. Been in the denial-stage. This site was not letting me know when I had a reply to a post. Please feel free to email me:
[email protected]

I'm not doing so well. How about you?

#18 RobW

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Posted 18 September 2011 - 05:41 PM

Hi guys, new levels as of 7/27/11:

TSH: <0.01
T3: 1.1 (0.7 - 1.9)
T4 Free: 1.33 (0.59 - 1.61)

I will be taking another test in October sometime, so I will try and post then. Still on the block & replace method (100mcg levothyroxin, 20mg methimazole). Doctor says it's the best method to do to treat hyperthyroidism. I've since gained a little weight, about 20lbs over the course of a year or so.. trying to exercise more.

Also had testosterone levels checked due to loss of energy, figured I may as well find out just to make sure lower thyroid levels is the cause. Doctor says its on the low side of normal..

Questions and/or thoughts?

#19 Andros

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Posted 18 September 2011 - 06:27 PM

Hi guys, new levels as of 7/27/11:

TSH: <0.01
T3: 1.1 (0.7 - 1.9)
T4 Free: 1.33 (0.59 - 1.61)

I will be taking another test in October sometime, so I will try and post then. Still on the block & replace method (100mcg levothyroxin, 20mg methimazole). Doctor says it's the best method to do to treat hyperthyroidism. I've since gained a little weight, about 20lbs over the course of a year or so.. trying to exercise more.

Also had testosterone levels checked due to loss of energy, figured I may as well find out just to make sure lower thyroid levels is the cause. Doctor says its on the low side of normal..

Questions and/or thoughts?


Wonder why the doc ran a Total 3, not a Free T3? Total 3 is bound, unbound and rT3 (reverse) hormone.

Free T3 is unbound only which is available for cellular uptake and your "active" hormone.

Your Free T4 looks like it is at a good place. How do you feel, that's the main thing.

Most men w/thyroid disease do have low testosterone and you might want to get your ferritin checked as well as that seems to be low with the autoimmune disease as well.

Ferritin http://www.thewayup....ters/081504.htm
(should be 50 to 100; the closer to 100, the better)

The above is opinion only, not medical advice. No doctor degrees here. Please seek the advice of a qualified physician........ Andros :D

Graves' Disease, Lupus (Systemic & Discoid), Sjogren's and old age. ;) Armour........3 1/2 grains per day.

Welcome all members! Thank you everyone for participating on this board, for helping other posters and for sharing your experiences and wisdom!

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#20 RobW

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Posted 18 September 2011 - 10:08 PM

Hi Andros,

I feel better than I did a long time ago when I first started treatment - that's for sure. I think I may be at risk for low iron levels, just based on that symptoms list, and will probably have the doctor check iron levels on my next lab (in a few weeks). Thanks for the pointer.

But as I said, I do feel better with current treatment and how we're doing things - I feel comfortable with my doctor as well - which is a good thing, right?

Anyways, thanks for everyone who participated on this thread. More info to come, and if you have any more questions for me, let me know. :D




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