# leg pain



## sharris123

Has anyone had really bad pain in their calves? when I stand up either from sitting or sleeping, i am in excruciating pain until I walk it off...? has me pretty scared.


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## DebM

I didn't necessarily have pain in my calves but my feet hurt when I was hyper. I'm still waiting to see after being off all meds for 6 weeks what my bloodwork will say if I am in remission. They don't hurt anymore but I'd sit on my bed and watch tv with my legs dangling and they would really hurt. I'd think "gosh was I not going to able to walk on top of everything else". That has subsided and I'm not noticing it now. I wonder if it is water retention?


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## bradybunch

I had very bad pains in my legs and knees while hyper, and had them again after I went hypo. It was so bad that I couldn't walk stairs. Graves has been known to cause what some doctors call muscal wasting, which is really saying that the muscals become very week. This does cause pain. Until my levels were within range for several weeks I would have these pains. I hated it. I would mention it to your doc, just to let them know the next visit. Better to be on the safe side. Hope your legs feel better soon.
Valarie


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## KrazyThyroid

Newly diagnosed and wanted to say that before I started the meds I would have pain in my arms, legs, joints. It would feel as if it were so deep in the bones. I was scared that I had bone cancer or something. Now on the thyroid meds I have not had any of that pain which makes me believe that it was due to being hyper. I hope you find a solution to yours soon. Will be praying for you.


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## sharris123

Well here I am at 19 days past RAI and my leg pains have lessened drastically! My joints are sore, but when I stand, it doesnt hurt! I just hope this continues to get better!


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## Deedah

Way To Go!!!


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## jess12808

I want to say WAY TO GO! Then say, yea I had pain in my heel and tendons behind (achillies-sp?) and the arch of my right foot. Once my levels got less hyper it felt much better. A little sore at first, but better after awhile.


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## sharris123

Its baack...im not too happy about it, but got up today, feel like my old self.. muscle aches and sore legs!!! It was good for a bit. Hopefully starting on meds of some sore next week....gained all my weight back!!! I am screaming inside, I dont think anyone can hear me yet!!

Take care all.

s


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## Deedah

I think the aches and pains you have been dealing with are just one more thing added to the list of : "get used to it, and get over it" kind of advice usually given to thyroid patients. No, I'm not a thyroid sufferer... therefore I haven't a clue of how it feels. BUT I'm human, and I have my share of medical issues. When my aches and pains come around (every day), rather than think of getting used to it, I try to rise above it. This is not to say I don't ***** about it, but deep breaths and relaxation technics are helpful... for me, prayer helps too. Wish you the best of health, and peace of mind.
Sincerely, 
Val


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## Luka

I have been having severe leg pain..calves, hips etc for quite a while now. I was dx with graves a few weeks ago, i did not know the two were connected, but now I beleieve they are. I have been on tapazole for a cuple of weeks and I actually think they feelo better than they have in a year!


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## 182

yes i have had aching legs for a year now, i have found when i hurt the top of my leg my doctor gave me pain killers and they took away the pain in my legs as well also my arm.


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## Kiddlebit7

Hi...I'm Laurie and I just joined today. After reading this post, I wanted to share some info, in case it helps anyone else. Several months ago, before I saw the endocrinologist and was diagnosed with Graves, my previous doctor ran a blood test for Vitamin D3 deficiency. The results showed the deficiency, so I started taking a D3 supplement that I picked up at my grocer.

When the bottle ran out, I forgot to get another. Gradually over a period of several weeks, the pain in my arms, legs and feet got worse. It hurt so badly that I couldn't sleep for several nights.

Fortunately, my sister is an excellent diagnostician. She was telling me how certain diseases rob your body of crucial vitamins and minerals. At which point the lightbulb went off over my head and I remembered about the D3.

So I started back on it immediately. That was about a week and a half ago and I'm happy to say the pain is down to a manageable amount. It's better when I'm mobile and worse when I lay down, (probably because the mattress pushes on the nerve endings) but at least it's at a level I can live with.

Next time you have bloodwork done, you might look into this : )

Hope it helps!


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## critterz

Thank all of you for showing me that I'm not crazy! I have had awful leg pain and have been hobbling all summer. I have lumbar degenerative disc and thought that is what was causing my pain so went to spine doc who gave me spinal injections. They did nothing for me, but I had never had the leg pain before. I had not been diagnosed with Graves at that time. I was eating so much Ibuprofen for my pain that I ended up with a perforated ulcer and had to have emergency surgery. The pain was that bad. Finally I got a new doc and was diagnosed with Graves in 2 days. I was put on PTU immediately and the pain in my legs finally disappeared. Unfortunately I had to quit taking the meds so i could get the RAI and the leg pain has returned. I just had RAI last week and am now back on PTU so hope it goes away as I walk alot at work and it definitely affects me in all areas of life, especially stairs. I have no doubt that the leg pain is completely related to the Graves! My endo said it was all part of it and they did not know why some people get it and others don't, nor did they know what causes it. My electrolytes and calcium was normal range.


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## Andros

critterz said:


> Thank all of you for showing me that I'm not crazy! I have had awful leg pain and have been hobbling all summer. I have lumbar degenerative disc and thought that is what was causing my pain so went to spine doc who gave me spinal injections. They did nothing for me, but I had never had the leg pain before. I had not been diagnosed with Graves at that time. I was eating so much Ibuprofen for my pain that I ended up with a perforated ulcer and had to have emergency surgery. The pain was that bad. Finally I got a new doc and was diagnosed with Graves in 2 days. I was put on PTU immediately and the pain in my legs finally disappeared. Unfortunately I had to quit taking the meds so i could get the RAI and the leg pain has returned. I just had RAI last week and am now back on PTU so hope it goes away as I walk alot at work and it definitely affects me in all areas of life, especially stairs. I have no doubt that the leg pain is completely related to the Graves! My endo said it was all part of it and they did not know why some people get it and others don't, nor did they know what causes it. My electrolytes and calcium was normal range.


When are you due for labs? I am just wondering if you have gone hypothyroid at this point and maybe should be taken off the PTU and placed on thyroxine replacement?

When does your doctor want to see you?


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## MrGraves

yes, leg feet and back pain, calf area and groin area pain can be almost 110% disabling and are related to the graves. Im on some meds for it but gettin prepped for a RAI I have a feeling here real soon.

IM sorry your legs are hurtin again. I was trying Yoga but it was just to painful as I am to far into the disease, but, I could see how if I wasnt so sore, it would be great and work. I stretch in bed, before I even get out of bed and thats hard 2 do but, gotta get up and get to work sometime. ! 
Ginger tea, its great for joint pain, its not intoxicating, it tastes great and 
works real well in conjucntion with Doans back pain relief, OTC. God forbid you ask for somthing to feel better, youll be called a junk head.. if ya do, let it roll off your back.!!! Your NOT! & goto another Doc and if they try to give you tramdol / lorcet, refuse it, its very bad mentally for people with graves or atleast it was for me.


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## sidpb

I can't tell you how comforting this posting on Leg pain is. I've had terrible lower leg pain for several months now. Every time my grandson would touch my legs it would hurt. Like it does if you do something too strenuous and it makes your muscles sore. Finally a couple of weeks ago I was diagnosed with Graves Disease. SCARY! I have never had any big problems like this before. I've elected to just have my thyroid removed. Anyway I have looked everywhere for the leg pain symptom. This morning I couldn't even straighten my feed flat on the floor. I just hobbled around all day.


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## Andros

sidpb said:


> I can't tell you how comforting this posting on Leg pain is. I've had terrible lower leg pain for several months now. Every time my grandson would touch my legs it would hurt. Like it does if you do something too strenuous and it makes your muscles sore. Finally a couple of weeks ago I was diagnosed with Graves Disease. SCARY! I have never had any big problems like this before. I've elected to just have my thyroid removed. Anyway I have looked everywhere for the leg pain symptom. This morning I couldn't even straighten my feed flat on the floor. I just hobbled around all day.


Hi there and welcome to the board. Yes; this pain is called peripheral neuropathy and I have had it too. So badly in fact; I used to cry when trying to walk. My feet especially felt like every bone was smashed.

Are you having surgery or RAI? Let us know!


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## MrGraves

*peripheral neuropathy *

What is it called when you cant stand on your feet becuz your heels and toes feel smashed? Is it the same thing? *peripheral neuropathy *
Why dont the docs tell us these thigs... are you a secret ultra thyroid doc ahdros?  
My feet dont bleed thank Jesus but Ive been getting random nose bleeds in the last month. 
Please be careful with the pain killers, they work for a few weeks and then turn on you and amplify the pain.

D3 supplement , Kiddlebit7 I really blieve in that stuff, a vitamin called HT-3 keeps me from waking up ready to fight or cry, same as the D3, you can probly get it at wally world or your local market. arty0006:


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## Andros

MrGraves said:


> *peripheral neuropathy *
> 
> What is it called when you cant stand on your feet becuz your heels and toes feel smashed? Is it the same thing? *peripheral neuropathy *
> Why dont the docs tell us these thigs... are you a secret ultra thyroid doc ahdros?
> My feet dont bleed thank Jesus but Ive been getting random nose bleeds in the last month.
> Please be careful with the pain killers, they work for a few weeks and then turn on you and amplify the pain.
> 
> D3 supplement , Kiddlebit7 I really blieve in that stuff, a vitamin called HT-3 keeps me from waking up ready to fight or cry, same as the D3, you can probly get it at wally world or your local market. arty0006:


You are a real funny bunny, MrGraves and we sure love a sense of humor around here!

Hah! If I told you I never graduated from the 10th. grade; would you believe that? No, I am not a doctor. Just a person much like who has stived to better my life. You might say I am one of God's many little miracles!!arty0006:

Here is some info for you and anyone else who is reading this.

hypothyroidism - a condition in which your thyroid gland doesn't produce enough thyroid hormone - may cause peripheral neuropathy, such as carpal tunnel syndrome.

Peripheral neuropathy is damage to your peripheral nerves - the nerves that carry information between your brain and spinal cord and the rest of your body, such as your arms and legs. Peripheral neuropathy is often caused by diabetes and autoimmune diseases such as rheumatoid arthritis. But it may also be caused by other conditions, such as severe, long-term untreated hypothyroidism. The association between hypothyroidism and peripheral neuropathy isn't fully understood.

Signs and symptoms of peripheral neuropathy may include pain, numbness and tingling in the area affected by the nerve damage. It may also cause muscle weakness or loss of muscle control.

Treatment of peripheral neuropathy due to hypothyroidism is directed at the underlying hypothyroidism.

The above is also true when hyper. As a matter of fact it is usually far worse w/ hyperthyroid.

http://www.mayoclinic.com/health/hypothyroidism/AN01038


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## sidpb

Andros said:


> Hi there and welcome to the board. Yes; this pain is called peripheral neuropathy and I have had it too. So badly in fact; I used to cry when trying to walk. My feet especially felt like every bone was smashed.
> 
> Are you having surgery or RAI? Let us know!


I am having the surgery. I go see the surgeon tomorrow (Monday). I would like it ASAP. This is really screwing up my life. The first thing I noticed was I had to start dropping my weights because I couldn't lift as much... that was several months ago. Then I started loosing weight, which really didn't bother me, lol! Eventually tho, I started getting shaky and out of breath when just climbing the stairs. By this time I had given up on exercise and rarely wanted to ride my horses. Usually after I did I was so muscle sore I could hardly move my legs or back for a day or so. I'm a hairdresser so I need to be able to move. My calves started hurting about the same time I started dropping my weights. My grandson would come by and just touch my lower leg and it would hurt. I'm irritable, itchy, the muscles are hanging off my arms and legs like a 90 year old and I'm so weak. This is hard to take for me because I have always been a strength trainer and enjoyed being fairly active and strong even with my small stature. I have never been ill like this a day in my life. I currently take Propranolol (3 in the morning and 3 at night) to try to help with the symptoms. I doesn't seem to help the muscle wasting but does help a little with the shaking and irregular heart beat. I can't take anymore than that and it still doesn't take many of the symptoms away. Is that enough whining, or would you like more, lol!


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## sidpb

Andros said:


> You are a real funny bunny, MrGraves and we sure love a sense of humor around here!
> 
> Hah! If I told you I never graduated from the 10th. grade; would you believe that? No, I am not a doctor. Just a person much like who has stived to better my life. You might say I am one of God's many little miracles!!arty0006:
> 
> Here is some info for you and anyone else who is reading this.
> 
> hypothyroidism - a condition in which your thyroid gland doesn't produce enough thyroid hormone - may cause peripheral neuropathy, such as carpal tunnel syndrome.
> 
> Peripheral neuropathy is damage to your peripheral nerves - the nerves that carry information between your brain and spinal cord and the rest of your body, such as your arms and legs. Peripheral neuropathy is often caused by diabetes and autoimmune diseases such as rheumatoid arthritis. But it may also be caused by other conditions, such as severe, long-term untreated hypothyroidism. The association between hypothyroidism and peripheral neuropathy isn't fully understood.
> 
> Signs and symptoms of peripheral neuropathy may include pain, numbness and tingling in the area affected by the nerve damage. It may also cause muscle weakness or loss of muscle control.
> 
> Treatment of peripheral neuropathy due to hypothyroidism is directed at the underlying hypothyroidism.
> 
> The above is also true when hyper. As a matter of fact it is usually far worse w/ hyperthyroid.
> 
> http://www.mayoclinic.com/health/hypothyroidism/AN01038


I have noticed when I get nervous my arms from my elbow down start to go tingle and my thumbs suck in to my hand. This is especially a problem because I Barrel Race and if you can't grip the horn you will fall off, and unfortunately that's when I get the most nervous. However I'm hyper not hypo. Could it be sometimes it runs the other way? I have also notices my eyes have days when the obviously look like TAD is starting in (especially the right one) and others when they look perfectly fine. My husband notices it too. My uptake test was 89% at 4 hours.


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## Andros

sidpb said:


> I am having the surgery. I go see the surgeon tomorrow (Monday). I would like it ASAP. This is really screwing up my life. The first thing I noticed was I had to start dropping my weights because I couldn't lift as much... that was several months ago. Then I started loosing weight, which really didn't bother me, lol! Eventually tho, I started getting shaky and out of breath when just climbing the stairs. By this time I had given up on exercise and rarely wanted to ride my horses. Usually after I did I was so muscle sore I could hardly move my legs or back for a day or so. I'm a hairdresser so I need to be able to move. My calves started hurting about the same time I started dropping my weights. My grandson would come by and just touch my lower leg and it would hurt. I'm irritable, itchy, the muscles are hanging off my arms and legs like a 90 year old and I'm so weak. This is hard to take for me because I have always been a strength trainer and enjoyed being fairly active and strong even with my small stature. I have never been ill like this a day in my life. I currently take Propranolol (3 in the morning and 3 at night) to try to help with the symptoms. I doesn't seem to help the muscle wasting but does help a little with the shaking and irregular heart beat. I can't take anymore than that and it still doesn't take many of the symptoms away. Is that enough whining, or would you like more, lol!


Believe it or not, this is called faux Myastenia Gravis. You have all the clinical signs but not the antibodies to it. I had the same. I could not take a breath for the muscles supporting the lungs were weakening, had bladder and uterus prolapse, could not stand up or take a few stairs. I had to do everything sitting down. I thought I had MS; truly.

I am full out today; I lift heavy weights (for a woman), do 4.5 and 6 miles cardio per day and really kick some butt at the gym. I am 67 now. There has been permanent organ damage but for the most part, I am doing excellent so hang tough. You will get better.

Yea, yea................get that sucker out. If I could do it over, I would never go on anti-thyroid meds. I would go straight on to surgery. Glad you have opted for that route instead of RAI for a couple of reasons. Good for you.

Let us know what's up after you see the surgeon if you will?


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## sidpb

I sure will. I have already started compiling my questions. Hopefully he will be a little more knowledgeable about this disease than my GP. I would have gone to an Endocrinologist but he was several weeks out and I just want to start my way back to normal as soon as possible. Thank you for your help and being a good listener too. My husband thinks I'm whacked I'm sure!


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## Andros

sidpb said:


> I sure will. I have already started compiling my questions. Hopefully he will be a little more knowledgeable about this disease than my GP. I would have gone to an Endocrinologist but he was several weeks out and I just want to start my way back to normal as soon as possible. Thank you for your help and being a good listener too. My husband thinks I'm whacked I'm sure!


Give this to hubby......

Letter for families of Grave's patients......
http://home.rica.net/deecee/information.htm

We are here for you; anytime.....................


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## chopper

Is there an actual test for Myastenia Gravis?

My doctor didn't seem to think there was anything specific but a group of symptoms were required for a dx.

I have mentioned MS to my doctor a thousand times. I think it's unlikely or at least I hope so since I have known thyroid trouble (what would be the odds?)

One of my biggest complaints is what I call muscle ratcheting. When I feel hyper my joints between large muscle groups feel like they ratchet - in other words, when "it" comes on I can't seem to bend my arm in a smooth, even movement but rather a series of ratchet-like clicks - it's the oddest thing - happens to my legs too. Then of course there is the very obvious ptosis or eyelid drooping - it's ALWAYS my left eye only.

Was wondering if anyone knew of specific tests for it so I can ask the doc - rulle out yet one more thing hopefully.


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## tbudke

I recentley came upon this Forum that gives you so much information about Thyroid issues. You may find some information helpful.
http://thyroid.about.com/od/hyperth...aves_Disease_Overactive_Thyroid_Condition.htm

thyroid.about.com has a wealth of information.


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## Andros

nasdaqphil said:


> Is there an actual test for Myastenia Gravis?
> 
> My doctor didn't seem to think there was anything specific but a group of symptoms were required for a dx.
> 
> I have mentioned MS to my doctor a thousand times. I think it's unlikely or at least I hope so since I have known thyroid trouble (what would be the odds?)
> 
> One of my biggest complaints is what I call muscle ratcheting. When I feel hyper my joints between large muscle groups feel like they ratchet - in other words, when "it" comes on I can't seem to bend my arm in a smooth, even movement but rather a series of ratchet-like clicks - it's the oddest thing - happens to my legs too. Then of course there is the very obvious ptosis or eyelid drooping - it's ALWAYS my left eye only.
> 
> Was wondering if anyone knew of specific tests for it so I can ask the doc - rulle out yet one more thing hopefully.


A special blood test can detect the presence of immune molecules or acetylcholine receptor antibodies. Most patients with myasthenia gravis have abnormally elevated levels of these antibodies. However, antibodies may not be detected in patients with only ocular forms of the disease.

The complete low-down here.......
http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm#139173153

Yep; the joints are badly affected also as well as the muscles. Sounds like a "delayed transmission" of sorts. Oh, that eye twitch. It used to drive me up a wall!! Yep; you sure do have Graves'. In my mind, there is absolutely no question of it.

My suggestion would be to firstly treat the thyroid! Then if any issues remain 18 months later, address them. Unlikely that you have MS given what we with Graves' are going through. Our whole bodies are wrecked. Who would have ever thought?


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## sidpb

So I went to the surgeon today. He said my pituitary gland was not even trying to function (0.005) as my thyroid was pumping way too much into my system (sorry, don't know what the other levels are). He said I needed to work with an endocrinologist to get my thyroid under control so he could remove it as it was too dangerous to remove right now, BUMMER!! I also went to an Ophthalmologist and he said there was slight swelling behind my eyes but nothing to worry about yet. HOWEVER, the surgeon said when they did the ultrasound on my thyroid they found a mass just under my collar bone that is pushing on my thyroid and they don't know what it is :scared0015:
So I go in tomorrow for a CT to see if they can figure it out... he mentioned the "C" word, YIKES!!!

I was hoping it was causing the problems with my thyroid but he said no, it was an unrelated problem. He said it did not "light up" with the uptake test.

Now I'm scared...


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## MrGraves

sibpb Ill be praying for you.


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## sidpb

Thank you MrGraves, and I for you...


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## Andros

sidpb said:


> So I went to the surgeon today. He said my pituitary gland was not even trying to function (0.005) as my thyroid was pumping way too much into my system (sorry, don't know what the other levels are). He said I needed to work with an endocrinologist to get my thyroid under control so he could remove it as it was too dangerous to remove right now, BUMMER!! I also went to an Ophthalmologist and he said there was slight swelling behind my eyes but nothing to worry about yet. HOWEVER, the surgeon said when they did the ultrasound on my thyroid they found a mass just under my collar bone that is pushing on my thyroid and they don't know what it is :scared0015:
> So I go in tomorrow for a CT to see if they can figure it out... he mentioned the "C" word, YIKES!!!
> 
> I was hoping it was causing the problems with my thyroid but he said no, it was an unrelated problem. He said it did not "light up" with the uptake test.
> 
> Now I'm scared...


Aaaaaaaaaaaaaaaaaw; don't be scared. We are here for you. Welcome to the board.

That sounds like your thyroid has taken the path of least resistance as they are so wont to do. Wah!!

Look; you are going to be fine. I have read about many many cases similar to yours and all w/ a happy ending. Yes; you may have cancer but we can cross that bridge when we come to it and "if" you do, that also is easily taken care of. The thyroid is unique in that 99% of the time.

I too will hold you in prayer and do let us know about that CT scan ASAP. When you can!!!

You do need to be on anti-thyroid med prior to your surgery to get that somewhat under control so you don't dump an excessive amount of thyroxine in your system.

Has the doctor mentioned Lugol's Solution? This usually works well.


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## sidpb

Had my CT yesterday afternoon. I'm not sure it will tell much because the Dr and the Tech decided I couldn't have contrast in case I decided to have RAI instead of surgery. I told him I had been investigating my options for 3 weeks now and had FIRMLY decided to have the surgery. He said they wanted to leave their options open so they were still NOT going to do the contrast. UHG! Took maybe 15 min. This surgeon's office is not great on calling with test results. I'm still waiting for the results of a test I took 4 years ago, lol! REALLY!! No matter how many times I called I never found out what happened. I'm going to assume it was good news, lol!


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## MrGraves

ok, answered Prayer, or clueless doctors, or drug reactions?.... what to do..?
Talked to my DOcs Nurse yesterday on the phone, said he had looked at my labs and said my levels were normal and that HE doesnt think I have a thyroid problem.......... HUH? Im going to have my wife take a big high def picture of my neck and with NasDaqphils permission, post it on here. 
My thyroid gland is huge, my neck feels tight and swollen, and that ratcheting
I DONT have that in my arms at all yet... but I do have it in my legs, I walk like one of those freaky looking japanese robots by about 6-pm i cant take it anymore. Ratcheting is the best description for it Ive heard, I was calling it motion latching, my legs and back dont have fluid motion, they latch and stick like they are ran on gears... 
God Bless! Im not looking a gift horse in the mouth that somehow now after all this time I dont have a thy problem, then what else could all this possibly be? :confused0064:


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## Andros

MrGraves said:


> ok, answered Prayer, or clueless doctors, or drug reactions?.... what to do..?
> Talked to my DOcs Nurse yesterday on the phone, said he had looked at my labs and said my levels were normal and that HE doesnt think I have a thyroid problem.......... HUH? Im going to have my wife take a big high def picture of my neck and with NasDaqphils permission, post it on here.
> My thyroid gland is huge, my neck feels tight and swollen, and that ratcheting
> I DONT have that in my arms at all yet... but I do have it in my legs, I walk like one of those freaky looking japanese robots by about 6-pm i cant take it anymore. Ratcheting is the best description for it Ive heard, I was calling it motion latching, my legs and back dont have fluid motion, they latch and stick like they are ran on gears...
> God Bless! Im not looking a gift horse in the mouth that somehow now after all this time I dont have a thy problem, then what else could all this possibly be? :confused0064:


Lord have mercy. If you have a goiter, you have a thyroid problem. Can you not find another doctor to help you?

You can post your thyroid photo here; I am sure that would be fine. Since we last talked, I have had the pleasure of accepting mod position so now I can give you permission. How do you like that?


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## MrGraves

me likey a lot !  
phil was cool 2, I hope I didnt make him angry with me. 
starvee emailed me through you tube wrather upset that he had been banned asking me why, I said i dont know, Its not my board and I cant answer that question. IF I had ANYTHING to do with it, I am very sorry.

Thats NOT my adams apple folks, that is , Diagnosed by Dr. Longley as a goiter... my adams apple is up and underneith my thyroid at this point. 
Thank you all and God Bless!
SIDPB, im sorry, I didnt mean to turn your leg pain post into a thread about my neck, 
How are you doing thisevening? is the pain tolerable atleast?
God Bless!


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## sidpb

No worries MrGraves. It sounds like you have bigger fish to fry. I'm having a good day today. I even rode 2 horses after work. Sure hope I don't pay for it tomorrow, but it was nice to feel normal for a day. My pain is minimal - it's the fatigue that gets me down the most. I'm pretty high energy and we have 25 or so horses that need me whether I'm down or not. Plus a really cute Grandson. My Dr didn't call with any CT results yet so still no news on the mystery mass.

MrGraves your youtube video broke my heart. I hope for you there are answers soon.


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## Andros

MrGraves said:


> me likey a lot !
> phil was cool 2, I hope I didnt make him angry with me.
> starvee emailed me through you tube wrather upset that he had been banned asking me why, I said i dont know, Its not my board and I cant answer that question. IF I had ANYTHING to do with it, I am very sorry.
> 
> Thats NOT my adams apple folks, that is , Diagnosed by Dr. Longley as a goiter... my adams apple is up and underneith my thyroid at this point.
> Thank you all and God Bless!
> SIDPB, im sorry, I didnt mean to turn your leg pain post into a thread about my neck,
> How are you doing thisevening? is the pain tolerable atleast?
> God Bless!


Hmmmmmmmmmmmm; on the left side of the photo, it does seem there is a bulging. Take a glass of water, stand in front of a mirror, take a sip, lean head back and swallow. Watch closely and see what you can see.

The other piece of info is the thyroid gland does not always grow outward. It is prone to take the path of least resistance so it could be growing inward.

Wish your doc would order a radio active uptake scan for you; I "really" do. You might get him to make a move on that if you start shouting the CANCER word. Not that you have it but that it needs to be ruled out.


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## MrGraves

they ordered that for me and my kidney surgeon said no because i had just got my kidney stones removed and was healing from that, maybe it is time for a uptake scan. I had my kidney surgery in april. on both kids.

Im stoked you got to ride horses, that sounds awesome! I am glad you are able to do these things, keep giving the finger , so to speak, to your graves and keep riding your horses!!!! it is inspiration to me. !
were getting hammered with snow right now. Imagine, big beautifull horses running in a foot of snow, what a beautiful thing that would be to watch be a part of (maybe not for the horses)..


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## Andros

MrGraves said:


> they ordered that for me and my kidney surgeon said no because i had just got my kidney stones removed and was healing from that, maybe it is time for a uptake scan. I had my kidney surgery in april. on both kids.
> 
> Im stoked you got to ride horses, that sounds awesome! I am glad you are able to do these things, keep giving the finger , so to speak, to your graves and keep riding your horses!!!! it is inspiration to me. !
> were getting hammered with snow right now. Imagine, big beautifull horses running in a foot of snow, what a beautiful thing that would be to watch be a part of (maybe not for the horses)..


Yep; it's time. If you can do it, go for it. A radioactive uptake does not miss much.


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## sidpb

MrGraves said:


> they ordered that for me and my kidney surgeon said no because i had just got my kidney stones removed and was healing from that, maybe it is time for a uptake scan. I had my kidney surgery in april. on both kids.
> 
> Im stoked you got to ride horses, that sounds awesome! I am glad you are able to do these things, keep giving the finger , so to speak, to your graves and keep riding your horses!!!! it is inspiration to me. !
> were getting hammered with snow right now. Imagine, big beautifull horses running in a foot of snow, what a beautiful thing that would be to watch be a part of (maybe not for the horses)..


The horses LOVE to run in the snow. Last year we turned 3 of them out and they did run in a little over a foot of snow. One sorrel (red mane and tail and body) one bay (red body black mane and tail) and one paint (red and white with a black and white mane and tail). They were 3 wide and running in tandem. It was beautiful! We ride in an indoor arena during the winter. Currently 29 degrees and freezing rain. YUCK! Not sore today, so I may try riding again tonight.


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## Andros

sidpb said:


> I have noticed when I get nervous my arms from my elbow down start to go tingle and my thumbs suck in to my hand. This is especially a problem because I Barrel Race and if you can't grip the horn you will fall off, and unfortunately that's when I get the most nervous. However I'm hyper not hypo. Could it be sometimes it runs the other way? I have also notices my eyes have days when the obviously look like TAD is starting in (especially the right one) and others when they look perfectly fine. My husband notices it too. My uptake test was 89% at 4 hours.


I think hypers suffer worse from peripheral neuropathy but that is not to downplay the suffering of hypos. We each react differently and symptoms can and do cross over.

Hope that you have seen a board certified ophthalmologist to get a "baseline" and a thorough check-up? Much can be done and early intervention is essential.


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## sidpb

Surgeons office called. I have an unknown mass under my thyroid. Someone will be calling me for a biopsy. That probably isn't from my thyroid, right?


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## sidpb

Yes, I saw an Optho on Monday. He said they can't do anything until I start to get my thyroid under control. Seemed like the day after the exam my eyes really protruded more and have stayed that way ever since. I assumed it was because of him diallating and numbing them for the exam. He said he didn't think they would have a problem at all although he did say there was minimal swelling.


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## Lovlkn

sidpb said:


> Yes, I saw an Optho on Monday. He said they can't do anything until I start to get my thyroid under control. Seemed like the day after the exam my eyes really protruded more and have stayed that way ever since. I assumed it was because of him diallating and numbing them for the exam. He said he didn't think they would have a problem at all although he did say there was minimal swelling.


Once your thyroid is under control there is a good chance your eyes will improve.

I had mild lid retraction which completely resolved while on ATD's and has not returned since my surgery I had the "wide eye" look before I was put on ATD's.


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## Andros

sidpb said:


> Surgeons office called. I have an unknown mass under my thyroid. Someone will be calling me for a biopsy. That probably isn't from my thyroid, right?


It could be from your thyroid. There is sub-sternal thyroid tissue and ectopic thyroid tissue!

Oh, my goodness; I am sorry to hear this but the good news is that they found it.

So glad you saw the optho so that now you have a "baseline" and also someone on board. This is good.

Here is info

http://www.ncbi.nlm.nih.gov/pubmed/...med.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

http://www.ghorayeb.com/ThyroidSubsternalSurfaceAnatomy.html

http://www.endocrineweb.com/sternal.html

http://www.endocrinesurgeon.co.uk/thyroid/What-is-a-Retrosternal-sub-sternal-Goitre.html

Hang tough; this is a field where there is advanced technology and knowledge.

Of course I am not certain that this is what the mass is; it is sort of an experienced guess you might say.

We are here for you and I am sending up huge prayers and thoughts on your behalf. You will be fine! Honest!

Please keep us informed about scheduling of biopsy and so on.


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## sidpb

Went to the endocrinologist yesterday. He actually showed me my ultrasound and CT scan. The mass is about the size and shape of a Silly Putty egg (maybe slightly elongated). The tissue inside is coarse and granular, but is very smooth and symmetrical on the outside "shell". It sits on the bottom left side, underneath my thyroid. He thought it could be my thymus gland which should have shrunk as I became older but didn't and enlarged due to the Graves Disease. He called the pathologist and discussed it with him and kept saying "Rare finding" and "Unusual circumstances". Made me feel pretty special, lol! He actually made me feel a little calmer about everything. It also has very little blood flow which he said was good. I go have my Biopsy done Monday. The endocrinologist said I would have to be on the Methimazole for a month or so before I could have my surgery. He said I was on the high side of moderate Graves.


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## Andros

sidpb said:


> Went to the endocrinologist yesterday. He actually showed me my ultrasound and CT scan. The mass is about the size and shape of a Silly Putty egg (maybe slightly elongated). The tissue inside is coarse and granular, but is very smooth and symmetrical on the outside "shell". It sits on the bottom left side, underneath my thyroid. He thought it could be my thymus gland which should have shrunk as I became older but didn't and enlarged due to the Graves Disease. He called the pathologist and discussed it with him and kept saying "Rare finding" and "Unusual circumstances". Made me feel pretty special, lol! He actually made me feel a little calmer about everything. It also has very little blood flow which he said was good. I go have my Biopsy done Monday. The endocrinologist said I would have to be on the Methimazole for a month or so before I could have my surgery. He said I was on the high side of moderate Graves.


Gosh; it sounds like you have a very good endo and that he is on top of things on your behalf. I am so glad also that he was reassuring. Yes; I suppose it could be the thymus. I am sure we will know more from the biopsy!

You will be heavy in my thoughts and prayers for Monday and when you are able, please do update us on the procedure, how you are feeling and of course the results when they come in.

That is true about the Methimazole as this will prevent "dumping" i.e. thyrotoxicosis during surgery. So do as he says; faithfully!


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## sidpb

Just had my biopsy done. The pathologist came in and said all she could see were lymphocytes. She believes it's my thymus just like the Endocrinologist said. I guess it's nothing to be worried about but it seems strange it would be up so high. The radiologist said it nearly wraps around the whole front of my neck. The procedure was fairly quick. The only painful part was when the radiologist accidently pierced my trachea. THAT HURT!

I've been worried about MrGraves. How are you?


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## Andros

sidpb said:


> Just had my biopsy done. The pathologist came in and said all she could see were lymphocytes. She believes it's my thymus just like the Endocrinologist said. I guess it's nothing to be worried about but it seems strange it would be up so high. The radiologist said it nearly wraps around the whole front of my neck. The procedure was fairly quick. The only painful part was when the radiologist accidently pierced my trachea. THAT HURT!
> 
> I've been worried about MrGraves. How are you?


Well; that "is" interesting. What is the game plan? Have you talked to the endo yet? Goodness!


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## sidpb

Lovlkn said:


> Once your thyroid is under control there is a good chance your eyes will improve.
> 
> I had mild lid retraction which completely resolved while on ATD's and has not returned since my surgery I had the "wide eye" look before I was put on ATD's.


My endocrinologist said there are two types of TAD. One where the eyelid retracks which is from a high level of thyroid and the other is where the swelling is behind the eyes. He thought most of mine was from high levels and when we get them under control I will look normal again. I do have some swelling behind my eyes but at this time it's minimal. Pretty much what you said, Lovlkn.

Thanks for the encouragement!


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## sidpb

Andros said:


> Well; that "is" interesting. What is the game plan? Have you talked to the endo yet? Goodness!


So the endo called and said my blood test were back. My liver function is slightly low and my white cells are slightly low but he thought that was because I just fought off a cold. So he started me on the Methimazole. After just 2 pills was feeling much better! AMAZING! I could think and move. He asked if I had the biopsy done and I told him about the thymus. He was ecstatic! WHAT?! I think he sees a paper in his future. LOL!

The surgeons office called and said my biopsy came back benign but they want me to come in ASAP to talk to the Dr about it. I said, " Because I'm a freak and have a thymus in my neck at 48?" and she said " Exactly". Hmm. I go in on Monday.

Not sure what there is to talk about. If it needs to come out they can just do it when they remove the thyroid. That is as long as I have one in my chest too.

Anyway, that's my update so far. Thank you Andros for your help and encouragement. I don't know how I could go through this without you all.


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## Andros

sidpb said:


> My endocrinologist said there are two types of TAD. One where the eyelid retracks which is from a high level of thyroid and the other is where the swelling is behind the eyes. He thought most of mine was from high levels and when we get them under control I will look normal again. I do have some swelling behind my eyes but at this time it's minimal. Pretty much what you said, Lovlkn.
> 
> Thanks for the encouragement!


Oh, dear. The eyelids retract because there is swelling behind the eyes causing exophthalmos which in turn causes the eyelids to retract.


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## Andros

sidpb said:


> So the endo called and said my blood test were back. My liver function is slightly low and my white cells are slightly low but he thought that was because I just fought off a cold. So he started me on the Methimazole. After just 2 pills was feeling much better! AMAZING! I could think and move. He asked if I had the biopsy done and I told him about the thymus. He was ecstatic! WHAT?! I think he sees a paper in his future. LOL!
> 
> The surgeons office called and said my biopsy came back benign but they want me to come in ASAP to talk to the Dr about it. I said, " Because I'm a freak and have a thymus in my neck at 48?" and she said " Exactly". Hmm. I go in on Monday.
> 
> Not sure what there is to talk about. If it needs to come out they can just do it when they remove the thyroid. That is as long as I have one in my chest too.
> 
> Anyway, that's my update so far. Thank you Andros for your help and encouragement. I don't know how I could go through this without you all.


It would seem this is found in Basedow (Graves'); I found this interesting. You may also.

http://sciencelinks.jp/j-east/article/200612/000020061206A0397655.php

I just hope that they can differentiate thymus tissue from thyroid tissue. Wonder what each one looks like on a slide under the microscope? Since it is behind the sternum it still makes me think it might be substernal thyroid and it is hiding your old age shrunken thymus.

Hah; what do I know? Not a doctor that is for sure but I am happy to offer what ever support and experience I can.

Will be waiting with bated breath to hear from you after your consult on Monday.


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## sidpb

Andros said:


> It would seem this is found in Basedow (Graves'); I found this interesting. You may also.
> 
> http://sciencelinks.jp/j-east/article/200612/000020061206A0397655.php
> 
> I just hope that they can differentiate thymus tissue from thyroid tissue. Wonder what each one looks like on a slide under the microscope? Since it is behind the sternum it still makes me think it might be substernal thyroid and it is hiding your old age shrunken thymus.
> 
> Hah; what do I know? Not a doctor that is for sure but I am happy to offer what ever support and experience I can.
> 
> Will be waiting with bated breath to hear from you after your consult on Monday.


It's not behind my sternum. It's begins above my collar bone at the base of my neck (they said the top of it is 3 fingers above my collar bone). It measures about an inch wide and 3 inches in length. I am assuming the majority of my thymus is in my chest where it belongs, but I'll make sure they check that before they remove it as I've heard it will compromise your immune system if you don't have it and I've already got enough problems now, lol.

Thymus supposably has T lymphocytes cells and thyroid produces epithelial cells (also called follicular cells or principal cells). The pathologist said these were lymphocyte cells.

Yes, I'm quite curious about this myself. I have 3 kidneys as well, so I'm sure this is just another "extra" body part. Maybe I was going to be a twin, lol!


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## Andros

sidpb said:


> It's not behind my sternum. It's begins above my collar bone at the base of my neck (they said the top of it is 3 fingers above my collar bone). It measures about an inch wide and 3 inches in length. I am assuming the majority of my thymus is in my chest where it belongs, but I'll make sure they check that before they remove it as I've heard it will compromise your immune system if you don't have it and I've already got enough problems now, lol.
> 
> Thymus supposably has T lymphocytes cells and thyroid produces epithelial cells (also called follicular cells or principal cells). The pathologist said these were lymphocyte cells.
> 
> Yes, I'm quite curious about this myself. I have 3 kidneys as well, so I'm sure this is just another "extra" body part. Maybe I was going to be a twin, lol!


Well; the thymus lies behind the sternum. Therefore, I for one still think we are dealing with thyroid tissue.

Gosh...................I think you were trying to be a twin. How very very interesting and all 3 kidneys are functional and good to go? That is so awesome!

Here is something interesting.........embryologicaberration re thyroid tissue.
http://jdm.sagepub.com/cgi/content/abstract/20/2/120

For whatever it is worth, I am learning new things because of you. That is good for me!! And you know I wish you well. I am praying for you. I think everything is going to turn out just fine; I "really" do!


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## sidpb

I'm certainly not as worried about it as I was but the Doctors must be learning something new as well because they are sure in an uproar over it. That is interesting about the thyroid tissue and it would make more sense, but the pathologist was pretty clear on it being my Thymus so we'll see. The surgeon wanted me to come in ASAP so they squished me in Monday afternoon. I'm sure it's not life or death I just think he's fascinated with it or something. I'm having a hard time swallowing on that side, however. I got a donut stuck in there this morning and I couldn't cough it up. I was at a Barrel Race and everyone was watching - How embarrassing!! My thyroid must be swelling in instead of out because my neck still looks normal but they said there was quite a bit of swelling.

I can see how people would want to change their minds about having surgery after taking this RX. I feel awesome. Haven't felt this good in MONTHS! I'm still pretty committed to having it removed though. The side affects of the RX still make me pretty nervous

And yes, all three kidneys are fully functional. They each have their own urethra's as well. I'd make a great donor!!!


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## Andros

sidpb said:


> I'm certainly not as worried about it as I was but the Doctors must be learning something new as well because they are sure in an uproar over it. That is interesting about the thyroid tissue and it would make more sense, but the pathologist was pretty clear on it being my Thymus so we'll see. The surgeon wanted me to come in ASAP so they squished me in Monday afternoon. I'm sure it's not life or death I just think he's fascinated with it or something. I'm having a hard time swallowing on that side, however. I got a donut stuck in there this morning and I couldn't cough it up. I was at a Barrel Race and everyone was watching - How embarrassing!! My thyroid must be swelling in instead of out because my neck still looks normal but they said there was quite a bit of swelling.
> 
> I can see how people would want to change their minds about having surgery after taking this RX. I feel awesome. Haven't felt this good in MONTHS! I'm still pretty committed to having it removed though. The side affects of the RX still make me pretty nervous
> 
> And yes, all three kidneys are fully functional. They each have their own urethra's as well. I'd make a great donor!!!


That is interesting that the kidneys each have their own ureters also.

I for one will be waiting on tenterhooks to hear from you on Monday.

Truly glad you feel better. That is the good news.


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## sidpb

So the surgeon just said it (the lump) was lymphatic tissue which the pathologist and endo think is just a piece of my thymus and he (the surgeon) said it was not that unusual. All he really wanted to see me about was to tell me he thinks it will be at least a month before they will attempt to remove my thyroid. He said he wants it as close to normal as it can get. Then they will give me some Iodine a week prior to the surgery to keep it from being so diffused with blood. I have Von Willebrand disease so he wants to take every precaution


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## Andros

sidpb said:


> So the surgeon just said it (the lump) was lymphatic tissue which the pathologist and endo think is just a piece of my thymus and he (the surgeon) said it was not that unusual. All he really wanted to see me about was to tell me he thinks it will be at least a month before they will attempt to remove my thyroid. He said he wants it as close to normal as it can get. Then they will give me some Iodine a week prior to the surgery to keep it from being so diffused with blood. I have Von Willebrand disease so he wants to take every precaution


Oh, yes.......................with Von Wilebrand one must take every precaution. I certainly agree w/ that one!

That is interesting about the lymphatic tissue. Hmmmmmmmm!

It sounds like all 3 are out to take very very good care w/ you and for that I am happy.


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## sidpb

Went in yesterday for them to check my levels. I had a pretty sore throat. Turned into a full blown sickness. I'm feverish and have body aches, chills headache, threw up this morning but it was just dry heaves. SO sick. My endo called this afternoon and said my white cells were elevated so I have an infection going on but my liver function had declined more since I've been on the Methimazole. He wants me to come in this afternoon to get on some antibiotics and probably stop the Methimazole....then what??? Last week I felt better than I had in months - possibly years.


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## Andros

sidpb said:


> Went in yesterday for them to check my levels. I had a pretty sore throat. Turned into a full blown sickness. I'm feverish and have body aches, chills headache, threw up this morning but it was just dry heaves. SO sick. My endo called this afternoon and said my white cells were elevated so I have an infection going on but my liver function had declined more since I've been on the Methimazole. He wants me to come in this afternoon to get on some antibiotics and probably stop the Methimazole....then what??? Last week I felt better than I had in months - possibly years.


Wow!! You poor kid! I am so so sorry! The sore throat is also a sign of the anti-thyroid med having a bad reaction. Oh, dear. Well,that is the thing; one cannot stay on anti-thyroid meds forever.

Talk to your doctor about you taking about 4 to 6 Grams or maybe more of L-Carnitine per day.........

http://www.ncbi.nlm.nih.gov/pubmed/11502782

http://autoimmunedisease.suite101.com/article.cfm/l_carnitine_for_graves__disease

Do NOT do this w/o your doctor's approval and knowledge. Capiche???

And your doctor may have a better suggestion; please let us know. Feel better.

Sending hugs,


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## sidpb

It turns out I have a Bacterial infection in my throat. Probably been there a while he said. He also mentioned that my tonsils were of a normal shape and size - WHAT? I had my tonsils out when I was 22. He said they must have grown back. Well that was a PAINFULL waste of time, lol! Anyway he wants to suspend the Methimazole for at least a week until my infection is gone (on Amoxicillin 500MG 3X a day for a week). Then hopefully my liver function will be normal and we will start them up again. I was only on the Methimazole for just under 2 weeks and it already had my levels almost normal (he said my T3’s were normal). So the surgery is postponed again. And I assume I'll start feeling weak again even though I'm on six 20mg Propranolol (3 in am and 3 in pm). It seems the only side affect it helps is my heart from racing and it lessens the jitteriness but not entirely. I wonder if it would work better if I took 2 am 2 afternoon and 2 evening? :sad0049:


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## sidpb

Andros said:


> Wow!! You poor kid! I am so so sorry! The sore throat is also a sign of the anti-thyroid med having a bad reaction. Oh, dear. Well,that is the thing; one cannot stay on anti-thyroid meds forever.
> 
> Talk to your doctor about you taking about 4 to 6 Grams or maybe more of L-Carnitine per day.........
> 
> http://www.ncbi.nlm.nih.gov/pubmed/11502782
> 
> http://autoimmunedisease.suite101.com/article.cfm/l_carnitine_for_graves__disease
> 
> Do NOT do this w/o your doctor's approval and knowledge. Capiche???
> 
> And your doctor may have a better suggestion; please let us know. Feel better.
> 
> Sending hugs,


I have called the endo to see if I can take the L- carnitine. I left a message so hopefully they will call back. This would sure take up the slack the Propranolol doesn't help!! Thank you for the info Andros!!!!!!


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## Andros

sidpb said:


> I have called the endo to see if I can take the L- carnitine. I left a message so hopefully they will call back. This would sure take up the slack the Propranolol doesn't help!! Thank you for the info Andros!!!!!!


You are welcome.

More on L-Carnitine.............
http://jcem.endojournals.org/cgi/content/full/86/8/3579


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## sidpb

His office said no. He doesn't want me to take any supplements until my infection and thyroid are under control. I told her (the nurse who called back) it wouldn't matter anymore if my thyroid was under control as it's supposed to help with the side affects. She then repeated herself so I said, "Is this a recording?" Guess I've lost what little patience I had.


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## Andros

sidpb said:


> His office said no. He doesn't want me to take any supplements until my infection and thyroid are under control. I told her (the nurse who called back) it wouldn't matter anymore if my thyroid was under control as it's supposed to help with the side affects. She then repeated herself so I said, "Is this a recording?" Guess I've lost what little patience I had.


Oh, dear............well, we tried. But, I do advise you do as the doctor suggests. Don't want to get into hot water here. He may want to run some tests that supplement could interfere with and THAT is entirely possible.

Holy cats. I feel for you, kid. I really do!


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## Andros

sidpb said:


> It turns out I have a Bacterial infection in my throat. Probably been there a while he said. He also mentioned that my tonsils were of a normal shape and size - WHAT? I had my tonsils out when I was 22. He said they must have grown back. Well that was a PAINFULL waste of time, lol! Anyway he wants to suspend the Methimazole for at least a week until my infection is gone (on Amoxicillin 500MG 3X a day for a week). Then hopefully my liver function will be normal and we will start them up again. I was only on the Methimazole for just under 2 weeks and it already had my levels almost normal (he said my T3's were normal). So the surgery is postponed again. And I assume I'll start feeling weak again even though I'm on six 20mg Propranolol (3 in am and 3 in pm). It seems the only side affect it helps is my heart from racing and it lessens the jitteriness but not entirely. I wonder if it would work better if I took 2 am 2 afternoon and 2 evening? :sad0049:


Yes; not much grows back but the tonsils do, the liver does and so does the thyroid "if" tiny pieces of tissue are left behind. You poor dear. Everything is coming down on you.

That might be a better course w/ the beta-blocker. Why don't you ask your doc if you can try to do that?

Please go here and read the possible side-effects of Methimazole if you will? This way, you know what to look for.

http://www.drugs.com/pro/methimazole.html


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## BionicThyroid

My legs ache ALL the time. Especially at night and first thing in the morning. I am 37 years old and feel like I'm 80. I take excedrin migrain for headaches and it also helps with the leg pain much better than Tylenol or Alleve.


----------



## Andros

BionicThyroid said:


> My legs ache ALL the time. Especially at night and first thing in the morning. I am 37 years old and feel like I'm 80. I take excedrin migrain for headaches and it also helps with the leg pain much better than Tylenol or Alleve.


This is most likely due to peripheral neuropathy. After all, the whole metabolism is skewed with this disease. I feel for you and I can identify because at one time I could not walk due to the pain. It was horrific.


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## sidpb

So I go in tomorrow to have another blood test done to determine if my liver is better. I finished off the Amoxicillin yesterday and guess what, today I have a sore throat. Great! There is some pressure and 'warm' pain between my ear and my jaw joint on the side the throat is sore. I'm never gonna get this sorted out... I have been gaining weight (8lbs in 1 week) but still have the shakey hungrys which I'm trying my best to ignore. Still working out and have energy to ride the horses and have cleaned the house even though I've been off the Methimazole for a week. Must still be in my system. I have started having the heat intolerance again. It's come back with a vengeance. Been getting up about 4:00 AM because I can't sleep. And that's after waking up several times during the night. {{sigh}}


----------



## Andros

sidpb said:


> So I go in tomorrow to have another blood test done to determine if my liver is better. I finished off the Amoxicillin yesterday and guess what, today I have a sore throat. Great! There is some pressure and 'warm' pain between my ear and my jaw joint on the side the throat is sore. I'm never gonna get this sorted out... I have been gaining weight (8lbs in 1 week) but still have the shakey hungrys which I'm trying my best to ignore. Still working out and have energy to ride the horses and have cleaned the house even though I've been off the Methimazole for a week. Must still be in my system. I have started having the heat intolerance again. It's come back with a vengeance. Been getting up about 4:00 AM because I can't sleep. And that's after waking up several times during the night. {{sigh}}


Oh, dear...............not happy to hear all this. Well, I will say that if your thyroid is inflamed, it can make your throat sore and your ears ache as well as the jaw. Yes, indeed. And if that is the case, AB won't help that much.

Gosh, do you think you are having water retention? That is a lot of gain in one week? Are you breathing well, heart beating okay? Pleural effusion would be a concern.

Will you see the doctor before you lab? I think it would be a good idea. The weight gain is a huge concern in my mind.

Will you let us know?


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## BionicThyroid

sidpb- You sound so much like me- I had to come off of the Methimazole for 10 days for the RAI uptake- It was HORRIBLE!! Also- my endo had me on 80mg Propranolol 4x a day for several weeks. My BP dropped so we gradually decreased it. I currently take 40mg, 4 times a day. Propranolol has given me more relief from symptoms than any other medication I have taken. I too gained weight quickly after starting the med's. It puzzled the doctor because my thyroid levels increased even though I was gaining weight. (14 lbs. in 10 days!!!)


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## sidpb

In the mornings I weigh 120 lbs. In the evenings I weigh 114lbs. WEIRD! Not sure what the deal is but I am gaining some weight as I originally lost down to 110 lbs (from 126 lbs). Endo said he wants to look at the labs before he decides on the best course for my throat. He said there were white spots in my throat although this time I didn't see any. I feel a little feverish tonight but not like it was before the AB's. I didn't tell him about the weight gain. I'm going to speak with him again in the morning after he reviews my labs. I've also got a rash of sorts on my neck, shoulders and chest. Looks like the measles with little white pustules. BOY do I feel attractive, lol! I don't feel like I'm retaining water and I do take a pill for that, but who knows?

BionicThyroid, I am taking Propranolol 60mg AM and 60mg PM. It does help with the symptoms but doesn't ever seem to help with the heat intolerance or the hunger/low blood sugar feeling. I generally don't sweat but I am just drenched several times a night and where ever my skin is touching the bed it actually feels like its burning. Sleep has been pretty elusive.

I just wonder what they can give me to bring my thyroid down to a normal level so they can remove it if my liver can't take the Methimazole?


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## Andros

sidpb said:


> In the mornings I weigh 120 lbs. In the evenings I weigh 114lbs. WEIRD! Not sure what the deal is but I am gaining some weight as I originally lost down to 110 lbs (from 126 lbs). Endo said he wants to look at the labs before he decides on the best course for my throat. He said there were white spots in my throat although this time I didn't see any. I feel a little feverish tonight but not like it was before the AB's. I didn't tell him about the weight gain. I'm going to speak with him again in the morning after he reviews my labs. I've also got a rash of sorts on my neck, shoulders and chest. Looks like the measles with little white pustules. BOY do I feel attractive, lol! I don't feel like I'm retaining water and I do take a pill for that, but who knows?
> 
> BionicThyroid, I am taking Propranolol 60mg AM and 60mg PM. It does help with the symptoms but doesn't ever seem to help with the heat intolerance or the hunger/low blood sugar feeling. I generally don't sweat but I am just drenched several times a night and where ever my skin is touching the bed it actually feels like its burning. Sleep has been pretty elusive.
> 
> I just wonder what they can give me to bring my thyroid down to a normal level so they can remove it if my liver can't take the Methimazole?


They can give you Lugol's solution so you won't dump thyroxine during surgery and after.

http://en.wikipedia.org/wiki/Lugol's_iodine

Talk to your doc about this and let us know.


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## sidpb

The Endo called this afternoon and said my labs were pretty much the same. My white cell count was down slightly but all the markers were there for a bacterial infection. My liver was very slightly better but not near enough. He said we would not be able to continue on the Methimazole or any other anti thyroid medication. I ask about the Lugol's solution and he said it has to be taken with the anti thyroid meds or it will actually elevate the thyroid hormone. He said he wasn't sure what to do here so he was going to call both my GP and the surgeon to see what they suggested.

Called me back later this afternoon and said my GP said to run another course of AB for the infection and the surgeon said we need to do the surgery ASAP before my levels rise any higher. The surgeons office was supposed to call me to schedule an appointment with him on Monday so he can check my BP and heart rate to make sure everything is good still, but I didn't hear from him. I'm a little worried that my thyroid is not stable and I still have a bacterial infection in my throat, but I guess the surgeon doesn't think it's a problem. The Endo suggested I think again about the RAI but I REALLY don't want to go that way. I want the quickest most effective treatment and everything I've read points to surgery. I guess I'll just have to see what the surgeon says.


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## Andros

sidpb said:


> The Endo called this afternoon and said my labs were pretty much the same. My white cell count was down slightly but all the markers were there for a bacterial infection. My liver was very slightly better but not near enough. He said we would not be able to continue on the Methimazole or any other anti thyroid medication. I ask about the Lugol's solution and he said it has to be taken with the anti thyroid meds or it will actually elevate the thyroid hormone. He said he wasn't sure what to do here so he was going to call both my GP and the surgeon to see what they suggested.
> 
> Called me back later this afternoon and said my GP said to run another course of AB for the infection and the surgeon said we need to do the surgery ASAP before my levels rise any higher. The surgeons office was supposed to call me to schedule an appointment with him on Monday so he can check my BP and heart rate to make sure everything is good still, but I didn't hear from him. I'm a little worried that my thyroid is not stable and I still have a bacterial infection in my throat, but I guess the surgeon doesn't think it's a problem. The Endo suggested I think again about the RAI but I REALLY don't want to go that way. I want the quickest most effective treatment and everything I've read points to surgery. I guess I'll just have to see what the surgeon says.


Have they done a throat swab? I am wondering if you have thrush instead of infection in which case AB could make it worse.

Anyway, by now you surely have the surgery set up? I will keep you in my prayers and thoughts for all to go well and to guide the surgeon's hand also.

When you are able, send a smoke signal our way.


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## sidpb

No they never did a throat swab. I thought he might but he just looked and read my blood work and determined it was a bacterial infection. It goes completely (or at least feels like it does) away for several week then comes back with a vengence for a couple of days then goes away again. EXCEPT for this last time. It came back less than 24 hours after I finished my AB. Never heard from the surgeon so I'll call first thing on Monday and try to get my hiney in there before it's too late. Thank you so much for your prayers, thoughts and help Andros, your a godsend!


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## Lovlkn

> They can give you Lugol's solution so you won't dump thyroxine during surgery and after.
> 
> http://en.wikipedia.org/wiki/Lugol's_iodine
> 
> Talk to your doc about this and let us know.


They are also called SSKI and it should settle your thyroid and makes the thyroid less vascular during surgery.

I know you are in a hurry to have your thyroid removed but please be sure the surgeon you choose does several thyroid surgeries a week to guarantee you are getting someone with experience.


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## Andros

sidpb said:


> No they never did a throat swab. I thought he might but he just looked and read my blood work and determined it was a bacterial infection. It goes completely (or at least feels like it does) away for several week then comes back with a vengence for a couple of days then goes away again. EXCEPT for this last time. It came back less than 24 hours after I finished my AB. Never heard from the surgeon so I'll call first thing on Monday and try to get my hiney in there before it's too late. Thank you so much for your prayers, thoughts and help Andros, your a godsend!


You are sooooooooooo welcome and please let us know when the surgery is set up.

I get on the platform about indiscriminate use of antibiotics. When a patient fails to respond the first time to an AB, it is time for a swab. There is gram positive, gram negative, fungal. You can't just be a guina pig for a crap shoot all the time. Not to mention the fact that the patient is never well. Aaaaaaaaaaaaaaaaaargh.


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## sidpb

Lovlkn said:


> They are also called SSKI and it should settle your thyroid and makes the thyroid less vascular during surgery.
> 
> I know you are in a hurry to have your thyroid removed but please be sure the surgeon you choose does several thyroid surgeries a week to guarantee you are getting someone with experience.


My endo assured me my surgeon has done many, many thyroid removals and he's very good so that's a relief. I'm in a hurry to get better, not in a hurry to get worse or "worse"!


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## sidpb

I called the surgeons office because I still hadn't heard from them and they made an appointment to see him Wed. afternoon. Right now I have the jittery feeling in my stomach I haven't felt for a few weeks. Makes me feel like I've drank too much coffee or ate too much sugar. I sure hope that doesn't mean my thyroid level is back up again. Don't have much energy today either. Sure hope I haven't screwed myself out of the surgery and have to have the RAI.


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## Andros

sidpb said:


> I called the surgeons office because I still hadn't heard from them and they made an appointment to see him Wed. afternoon. Right now I have the jittery feeling in my stomach I haven't felt for a few weeks. Makes me feel like I've drank too much coffee or ate too much sugar. I sure hope that doesn't mean my thyroid level is back up again. Don't have much energy today either. Sure hope I haven't screwed myself out of the surgery and have to have the RAI.


Hey; you are the patient and the payee! They can't force you into something you don't want to do! Just tell them you want to be sure you don't have cancer and you want that sucker sent out to pathology. That should get their attention.

I hope your level is not back up also. Geez; you poor kid!

Glad you called and please do let us know.


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## sidpb

So I saw the surgeon yesterday. He thought he was quite funny, weirdo lol. Anyway he said we are just going to take it out as long as my bacterial infection is gone. We have it tentatively scheduled for March 3rd but they are trying to see if they can get it done any earlier as I am on no meds and my thyroid level is continuing to climb. I have to start taking some RX a week before to reduce the vacularity. I dropped the prescription off at the pharmacy but they said it would take them a while to work out the dosage so I'll get it today. Now I'm a little nervous. The surgeon said he's going to leave a little thyroid tissue around all four glands and maybe some around where my vocal cords run through. Sure hope I don't end up like that lady that got graves again. He said there was a possibility. He said he'd have me eating a bunch of Tums to help regulate my calcium until the glands kick back in after surgery. He also said it would be just 2 weeks and I should be back to *MY* normal activities, WOO HOO!! I'll start on the thyroid replacer immediately.


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## Andros

sidpb said:


> So I saw the surgeon yesterday. He thought he was quite funny, weirdo lol. Anyway he said we are just going to take it out as long as my bacterial infection is gone. We have it tentatively scheduled for March 3rd but they are trying to see if they can get it done any earlier as I am on no meds and my thyroid level is continuing to climb. I have to start taking some RX a week before to reduce the vacularity. I dropped the prescription off at the pharmacy but they said it would take them a while to work out the dosage so I'll get it today. Now I'm a little nervous. The surgeon said he's going to leave a little thyroid tissue around all four glands and maybe some around where my vocal cords run through. Sure hope I don't end up like that lady that got graves again. He said there was a possibility. He said he'd have me eating a bunch of Tums to help regulate my calcium until the glands kick back in after surgery. He also said it would be just 2 weeks and I should be back to *MY* normal activities, WOO HOO!! I'll start on the thyroid replacer immediately.


Gee whillikers!! That sure sounds good. Well, yeah............he does not want to damage the parathyoids but they will be jostled around some anyway.

Sounds like this guy really has his act together and as a consequence, your act will be together also. Yippee!!!!

Yep; thyroid tissue can grow back. But that remains to be seen in your case. I would rather have a "careful" surgeon than not and I know you agree with that.

Remind us of your surgery date if you will? Or if it is sooner?


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## sidpb

The surgery is rescheduled for this Wed (17th). I have been on the Potassium Iodine (YUCK) since Thursday. Been off my AB's since Thursday as well. Still feel pretty good. No sore throat yet but I'm not holding my breath, lol. Go in for pre op Tuesday at 10am.


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## Lovlkn

sidpb said:


> So I saw the surgeon yesterday. He thought he was quite funny, weirdo lol. Anyway he said we are just going to take it out as long as my bacterial infection is gone. We have it tentatively scheduled for March 3rd but they are trying to see if they can get it done any earlier as I am on no meds and my thyroid level is continuing to climb. I have to start taking some RX a week before to reduce the vacularity. I dropped the prescription off at the pharmacy but they said it would take them a while to work out the dosage so I'll get it today. Now I'm a little nervous. The surgeon said he's going to leave a little thyroid tissue around all four glands and maybe some around where my vocal cords run through. Sure hope I don't end up like that lady that got graves again. He said there was a possibility. He said he'd have me eating a bunch of Tums to help regulate my calcium until the glands kick back in after surgery. He also said it would be just 2 weeks and I should be back to *MY* normal activities, WOO HOO!! I'll start on the thyroid replacer immediately.


How much replacement are they starting you on? I personally would wait at least 2-3 days before beginning as you will have a spill of thyroid hormone into your system from the surgery. I was the energizer bunny the day after mine was removed but by day 3 I felt very fatigued. I know of several people who began replacement immediately nd felt very hyper for the first few days.

They will test your calcium several times before you leave the hospital and you may be lucky and not have any issues.

You can mix the drops into a flavored drink to help mask the taste, gatorade works great.

Please keep up updated and good luck.


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## Andros

sidpb said:


> The surgery is rescheduled for this Wed (17th). I have been on the Potassium Iodine (YUCK) since Thursday. Been off my AB's since Thursday as well. Still feel pretty good. No sore throat yet but I'm not holding my breath, lol. Go in for pre op Tuesday at 10am.


Well........dang; good for you! This will be over before you know it! Whooooooooohoo!!

Will be keeping you in my thoughts and prayers and the surgeon as well. As soon as you can crawl to the computer, we hope to hear from you. I know everything is going to be fine!!

And you must make plans to pamper yourself when you come home! Line it all up now! arty0006:


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