# I hurt ALL over



## alikat (Feb 6, 2010)

I was diagnosed with hypothyroidism over a year ago. It was at first suspected to be a result of a pituitary tumor...but the tumor disappeared over time. Now we are guessing it is a result of the radiation therapy I had a few years ago for Hodgkin's disease. My TSH level is the only level that is not normal...and it has gotten higher with each 6 mos visit. My dosage of levothyroxin was up'd to 100 mcg last week due to my TSH showing at level 18.5 while on 88 mcg. I had constipation last week that seemed unresponsive to laxatives. But, I have now been regular for 1 week though it still showed signs of constipation in my recent CT results.

here is my newest problem, and reason for suspecting Hashi. I have begun to hurt all over. My upper back, shoulders, elbows, wrists, hands, armpits, thighs, knees and feet. I promise you I am not exaggerating when I say the pain is moderate. It feels like I have the body flu or just finished swimming 100 miles. I hurt likely crazy and have major fatigue.

Is muscle/joint pain common with Hashi along with high TSH levels? I just had bloodwork drawn today to test for ANA and was asked to go back to my 88 mcg dosage thogh the dr seems to think I need a higher dose than 100 mcg in reality. SHe is sending me to an endocrinologist and doing an ultrasound of my thyroid. I have no signs of goiter, no englargement that can be felt. And, only other sign I have is being extremely cold all the time.

any insight would be appreciated.

--alikat


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## Andros (Aug 26, 2009)

alikat said:


> I was diagnosed with hypothyroidism over a year ago. It was at first suspected to be a result of a pituitary tumor...but the tumor disappeared over time. Now we are guessing it is a result of the radiation therapy I had a few years ago for Hodgkin's disease. My TSH level is the only level that is not normal...and it has gotten higher with each 6 mos visit. My dosage of levothyroxin was up'd to 100 mcg last week due to my TSH showing at level 18.5 while on 88 mcg. I had constipation last week that seemed unresponsive to laxatives. But, I have now been regular for 1 week though it still showed signs of constipation in my recent CT results.
> 
> here is my newest problem, and reason for suspecting Hashi. I have begun to hurt all over. My upper back, shoulders, elbows, wrists, hands, armpits, thighs, knees and feet. I promise you I am not exaggerating when I say the pain is moderate. It feels like I have the body flu or just finished swimming 100 miles. I hurt likely crazy and have major fatigue.
> 
> ...


Hi, alikat! Gosh; you have been through the gamut, haven't you? I am sorry.

Wow; yeah.........radiation for Hodgkin's could render the thyroid unresponsive. Tch! How are you w/ the Hodgkin's? Are you good to go in that department?

Now to the situation at hand......

Have you ever had a FREE T3 test? Have you ever had a CPK test? High titers of CPK (creatine kinase) indicate inflammation i.e. PAIN!

The FREE T3 test would tell if you are converting your thyroxine (T4) to T3. If you are not converting, that may be the cause of the TSH rising and also the cause of the pain.

I have to tell you that if my thyroxine replacement is not just right, I get fibro-myalgia-like pain.

My other thought is Aspartame and/or all artificial Sweeteners. They are often the culprit for fibro-like pain. I avoid all artifical sweeteners for that reason.

Glutens can be another pain culprit.

So, tell me what you are doing and not doing and maybe we can sort this out.

Welcome to the board.


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## alikat (Feb 6, 2010)

As far as the Hodgkin's I have been in remission for 3 yrs now....so yes that its okay to say I'm "good to go" there. I'm due for PET scan next month.

I too avoid artificial sweetners, just because I know they cannot be good, and I cannot stand the taste of them.

I do not believe I have had these checks you have mentioned. They did typical bloodwork and tested my T3 and T4 levels when they did my TSH as well. But, I don't know if that is the same as FREE T3 test you mentioned and I don't believe I have had a CPK screen either.

I eat fairly well, as I try to be a good influence to my kids, and I do try to avoid sugars as well.

I have tried anti-inflammatories nad OTC pain meds for the pain, and so far no relief. The doctor said tylenol for pain....it does nothing.

I don't believe my TSH is a dangerous level. But I am systematically affected regardless. And I tend to be dizzy with headaches every day. The dizziness has been here since day one of having thyroid issues, it was the reason for the MRI that showed the tumor that soon after was no longer present. It was tiny.

So, yes, alot to go through, but I can take it. THis is by far no fun, but it beats chemo! lol

thanks for reading and for lending your experience.


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## Andros (Aug 26, 2009)

alikat said:


> As far as the Hodgkin's I have been in remission for 3 yrs now....so yes that its okay to say I'm "good to go" there. I'm due for PET scan next month.
> 
> I too avoid artificial sweetners, just because I know they cannot be good, and I cannot stand the taste of them.
> 
> ...


T stands for total. F stands for Free. Free hormone is the unbound hormone available for cellular uptake. It is a very very important test. Especially if the patient is not responding to treatment.

The totals are comprised of bound, unbound and reverse hormone. So, you see? You cannot really tell how much active hormone you have.


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## alikat (Feb 6, 2010)

Well I saw the endo yesterday. He put me on Levoxyl 112mcg. He said in 4 weeks we'll check my Vit D and FREE T4 as well as my TSH. He didn't seem to understand why the levo would cause me to hurt all over, adn said to let him know if the levoxyl does the same.

Now what gets me is that he mentioned that my USound showed a small 3 mm nodule on my thyroid....when the doctors office said no evidence of any abnormalities. I'm sorry, but even if its small....to a person with a history of cancer....NO EVIDENCE means Nothing NADA. I am at a higher risk for nodules due to my radiation in the past, and higher risk for cancer due to my past, and I'm to be watched closer than the typical patient due to my chances of a secondary cancer. SO, for them to have just written off a nodule in my opinion was not cool at all.

As for the nodule, I'm not going to wrory about it, as I am sure we'll keep a close eye. I just wish I could get the full story from my doctors when I get tests run. They have done this to me in the past with chest xrays forgetting to mention the show of many calcified nodes in my bronchial tubes and slight hardening of my lower left lung. I believe its my right to get the full story, and this is the second time they have not done so for me. Needlesstosay, I again, will be looking for a new general prac physician.

Hopefully this levoxyl will help me feel better. I've been waking up dizzy/nausea the past 3 nights and throughout every morning for as long as I can remember. I'm tired of it.

ugh. Sorry....venting tends to be my way of relieving stress.  I feel better now!

-alikat


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## Lovlkn (Dec 20, 2009)

alikat said:


> Well I saw the endo yesterday. He put me on Levoxyl 112mcg. He said in 4 weeks we'll check my Vit D and FREE T4 as well as my TSH. He didn't seem to understand why the levo would cause me to hurt all over, adn said to let him know if the levoxyl does the same.
> 
> Now what gets me is that he mentioned that my USound showed a small 3 mm nodule on my thyroid....when the doctors office said no evidence of any abnormalities. I'm sorry, but even if its small....to a person with a history of cancer....NO EVIDENCE means Nothing NADA. I am at a higher risk for nodules due to my radiation in the past, and higher risk for cancer due to my past, and I'm to be watched closer than the typical patient due to my chances of a secondary cancer. SO, for them to have just written off a nodule in my opinion was not cool at all.
> 
> ...


Muscle pain is very common when hypo- hopefully the increase in meds will give you some relief.

Be sure to get hard copies of the labs your doctor runs so you can see for yourself where you are and keep track of symptoms/lab results.


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## Andros (Aug 26, 2009)

alikat said:


> As far as the Hodgkin's I have been in remission for 3 yrs now....so yes that its okay to say I'm "good to go" there. I'm due for PET scan next month.
> 
> I too avoid artificial sweetners, just because I know they cannot be good, and I cannot stand the taste of them.
> 
> ...


How are you doing? Have not heard from you in a while.


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## alikat (Feb 6, 2010)

I've been feeling fairly well these past few days. The levoxyl 112mcg has not caused me to be in pain and I feel like my dizziness may have decreased as well. So far so good. 1 week into it.

thanks!


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## Andros (Aug 26, 2009)

alikat said:


> I've been feeling fairly well these past few days. The levoxyl 112mcg has not caused me to be in pain and I feel like my dizziness may have decreased as well. So far so good. 1 week into it.
> 
> thanks!


Well now................that is terrific news. You may hit some unpleasant symptoms as the med builds up in your system but hang tough. And of course, always let your doctor know how you feel.


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## Lovlkn (Dec 20, 2009)

alikat said:


> I've been feeling fairly well these past few days. The levoxyl 112mcg has not caused me to be in pain and I feel like my dizziness may have decreased as well. So far so good. 1 week into it.
> 
> thanks!


YEA!arty0045:


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## Nosbunny (Jan 21, 2010)

i have hashimotos and fibromyalgia i havent run the guantlet you have and i hope you get better, one thing i would like to share with you is this. as i was doing research on different things during a brief period my medication wasnt avaiable i stumbled upon some intresting things and tried them out. I removed first all plastic cups/bowls i drank or ate out of anything plastic i threw out anything with aspartme long ago as its very very bad for you.I used to have small knots in all my muscles, hurt like hell when i was touched anywhere, and sometimes id lay in bed and just cry in pain from the fibromyalgia. but then after taking all plastics out about a month went by and they were less and less til i had no knots anymore i had also switched to a compounded version of my medicine as well a bit later.but i seriously think plastic is alink somewhere with fibro pain. hope you get to feeling better


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## Andros (Aug 26, 2009)

Nosbunny said:


> i have hashimotos and fibromyalgia i havent run the guantlet you have and i hope you get better, one thing i would like to share with you is this. as i was doing research on different things during a brief period my medication wasnt avaiable i stumbled upon some intresting things and tried them out. I removed first all plastic cups/bowls i drank or ate out of anything plastic i threw out anything with aspartme long ago as its very very bad for you.I used to have small knots in all my muscles, hurt like hell when i was touched anywhere, and sometimes id lay in bed and just cry in pain from the fibromyalgia. but then after taking all plastics out about a month went by and they were less and less til i had no knots anymore i had also switched to a compounded version of my medicine as well a bit later.but i seriously think plastic is alink somewhere with fibro pain. hope you get to feeling better


And I seriously think you are right. Good for you!! And artificial sweetners? No way. And read your labels. They are putting aspartame in "regular" chewing gum and all sorts of items so they don't have to use as much sugar. I find this shocking and unconscienable.


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## alikat (Feb 6, 2010)

Well, the pain is back, but comes in spurts. (btw...I do not take in aspartame or any artificial sweetners...I hate the taste of it and with my history of cancer, I avoid such things.)

anyhow, had ANA tests come back clear. I am now at 135mcg of Levoxyl which has finally got my TSH level under 2.

I remember ANdro you telling me to get my Free T3 and Free T4 checked. So, that is what I am going to do. It has never even been considered to check this by either my family physician nor my endocrinologist. So, I'm curious at the outcome and reaction to my request. But, its worth a shot. I have come to the point of NO explanation for pain I endure too often. It keeps from sleeping at night, and causes me discomfort during my days.

Wish me luck and if there are anyother suggestions PLEASE offer them.

I have received Clean Good Results for the following tests upto this date:

PET/CT (history of cancer)
TSH
T3/T4
Vitamin D
ANA 
Arthritis Inflammation

I may be forgetting something..but you get the picture.


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## peaches (Sep 29, 2009)

Andros said:


> Hi, alikat! Gosh; you have been through the gamut, haven't you? I am sorry.
> 
> Wow; yeah.........radiation for Hodgkin's could render the thyroid unresponsive. Tch! How are you w/ the Hodgkin's? Are you good to go in that department?
> 
> ...


Andros is right about the CPK. I have a muscle disease called McArdle's disease and my CPK is by default much higher than normal and my muscles and joints feel like I just spent the whole day in a wrestling match. Normal levels are 20 or less depending on the test they run on you. My endocrinologist told me that if someone were to have their leg crushed in an accident the CPK levels would register at about 1,000. Mine are around 800 to 1500 on any given day. So if your CPK is elevated it would definitely mean that something fishy is going on. CPK levels rise in your body when you have some kind of muscle damage going on. McArdle's is extremely rare so I am not suggesting that that is what you have but levels can be elevated due to any number of things and the levels being elevated can be contributing to you aches and pains.


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## ToeToes (Jul 28, 2010)

I had this exact thing happen to me. I was so fatigued, but I was not tired and couldn't sleep if I tried. My entire body ached. My husband is finally starting to understand the disease instead of dismissing the whole thing (he was scared by it, but he's since grown up and accepted the thing). I felt so... weak. I need to finish up some laundry with him shortly and since I've ate, I've felt better. (Wish me luck. XD)

I'm sorry to hear about your pain, honey. I felt like crying because of how weak I felt. I have a massive ego/pride issues I deal with so any sign of pain or weakness is something I have to deal with on a very personal level. Like, I have no problem asking for help on understanding a new thing, but emotional or physical help is a subject I won't allow any help with lest they be a doctor.

At least you still have us, right?


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## Andros (Aug 26, 2009)

alikat said:


> Well, the pain is back, but comes in spurts. (btw...I do not take in aspartame or any artificial sweetners...I hate the taste of it and with my history of cancer, I avoid such things.)
> 
> anyhow, had ANA tests come back clear. I am now at 135mcg of Levoxyl which has finally got my TSH level under 2.
> 
> ...


What a shame; I am so sorry. Sending gentle hugs!

Please consider these tests....

(The ones you have not had, that is.)

Ferritin http://www.thewayup.com/newsletters/081504.htm

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/understanding/conditions/thyroid.html


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## CA-Lynn (Apr 29, 2010)

Just because ANA is clear doesn't mean there isnt some activity going on.

I can't tell you how many people are "seronegative" to a number of autoimmune arthritic diseases. LOTS.


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## Andros (Aug 26, 2009)

CA-Lynn said:


> Just because ANA is clear doesn't mean there isnt some activity going on.
> 
> I can't tell you how many people are "seronegative" to a number of autoimmune arthritic diseases. LOTS.


That is absolutely 100% correct; I cannot stress that enough. Thank you for saying this yet once again!


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