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Old 04-23-2012, 01:39 PM   #1
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Unhappy Hashimoto & Extreme Joint Pain

Hi, I', actually advocating for my husband. In April 2010 he was diagnosed as hyperthyroid with extreme joint pain. Was treated with medication to work on thyroid but gained 60 extremely quickly, extreme water retention in legs, and extreme joint pain. I was frustrated with Endo and in May 2011 we got a break to see a well known Endo in our area. Labs revealed he has Hashimoto's and Metabolic Syndrome. Vitamin D was low, Liver Counts were high, Testosterone was low, both Cholesterol and Triglycerides were high, and CPK marker extremely high 544 on a range of 25-170. August lab work things got better, he developed some energy and was able to start going back to the gym again, then coming around into 2012 he starts to feel fatigued and not sleeping. March 2012 labs revealed poor counts as it was in May not as bad. The thyroid has normalized itself but everything else is bad.

He has extreme joint pain through out is whole body and believed to have fibromalgia, which we don't like that diagnoses. It's just a catch all for pain but it's not trying to find out what's causing it. He does have bulgeding disks which the pain is intensified when everything is out of wack. Were doing everything the doctor tells us and taking all the medications as they say but the amount of pain he's in is not normal for Hashimoto's.

A real concern is the CPK marker, the range is 25-170, May 2011 it was 544, August 2011 it got better 258, but then up again March 2012 to 476. What can be the cause of this.

We have an appointment with Rheumotologist May 6, appointment with Neurologist May 10 for a suggested Nerve Conduction Study, and April 26 an appoint for the result of a sleep study he did. He can't sleep also, extreme insomnia with fatigue but will go days with only getting 5-6 hours of sleep.

Anyone have any suggestions or help for what were dealing with. I want to help him so much and at times I feel hopeless for him. I feel for him because he was so active prior to this disease and now people don't even recongize the same person. He's worried he's never going to get his life back.

 
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Old 04-23-2012, 02:21 PM   #2
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Re: Hashimoto & Extreme Joint Pain

Welcome!

Sorry for the reason you're here but, glad you found us.

I'm sorry I can't tell you anything about CPK markers but, I do know how to evaluate thyroid labs.

Whenever I hear of someone dealing with joint pain as well as the other issues your husband has, I will not deny that I believe a good, hard look at thyroid labs is in order.

For whatever it's worth, people on here have mentioned pain so bad that walking was difficult - I know I had the same issue when my levels were too low for me.

You see, having levels within the normal range isn't good enough. Levels need to be optimized to free the patient from thyroid symptoms. For most of us, this means FreeT4/T3 levels in the upper half/upper third of the range.

If you have copies of your husband's most recent thyroid labs, please feel free to post them here. You'll need to include the reference ranges for the FreeT4 and FreeT3 results since different labs use different ranges and his results can only be properly interpreted within the context of his lab's ranges.

We can tell you whether or not his thyroid function might be at least partially responsible for his joint pain.
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Old 04-23-2012, 02:22 PM   #3
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Re: Hashimoto & Extreme Joint Pain

I'm no expert , but with all the info iv read on thyroid problems this 1 doesnt fit the bill.
Wish your husband all the best.

 
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Old 04-23-2012, 02:23 PM   #4
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Re: Hashimoto & Extreme Joint Pain

I'm no expert , but with all the info iv read on thyroid problems this 1 doesnt fit the bill.
Wish your husband all the best.

 
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Old 04-24-2012, 12:02 AM   #5
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Re: Hashimoto & Extreme Joint Pain

I have no knowledge on CPK marker so cannot say anything in that regard.

I can only second what Sammy said, as far as thyroid goes, within ranges is not good enough. does not sound like that's optimal either, if you have any recent labwork, please free to post. (including reference ranges)

Hope your husband get to feeling better soon!

 
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Old 04-24-2012, 12:05 AM   #6
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Re: Hashimoto & Extreme Joint Pain

I have no knowledge on CPK marker whatsoever so cannot say anything in that regard. (edit: a quick google search 'CPK marker and hypothyroid' leads me to wikipedia and states there can be a connection)

I can only second what Sammy said, as far as thyroid goes, within ranges is not good enough. hypoT can cause severe jointpain. if you have any recent labwork, please free to post. (including reference ranges)

Hope your husband get to feeling better soon!

Last edited by lisa789; 04-24-2012 at 12:14 AM.

 
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Old 04-24-2012, 06:21 AM   #7
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Re: Hashimoto & Extreme Joint Pain

Hi! Does your hubby get the FREE T's done? is his T-3 low compared to his T-4? He might not convert well enough and his T-3 is too low. Adding a T-3 med can help with joint pain or even 'fibromyalgia" which some studies have shown are related to low FT3 levels. It's worth asking about or at least see where that level is.

 
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Old 04-24-2012, 03:37 PM   #8
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Re: Hashimoto & Extreme Joint Pain

Thanks everyone for the help. It's hard to understand and I try to ask as many questions as possible with the doctors.
Please advise if I am understanding this right Hashimoto's Thyroiditis is both a thyroid condition and an autoimmune disease?
We went to our GP today because of his pain. He has had some severe water retention and took Lasik (not sure of spelling but water pill), has extreme pain in some injured back disks he has, but doc also looked at other area and can feel the inflammation in the body. He's just started taking Lyrica only 75mg, but doc prescribed him Soma for the inflammation, and Percocet for Pain-mind you he already takes Norco and that's not helping the pain. This is what the doctor is calling a "flare up"-which I assume is the autoimminue part of the disease?
As far as his labs see below...

May 2011,
1st visit to new Endo a lot of blook work was done but for tyroid only see FSH which is 4.5 with range at 1.6-8.0
Aug 2011,
Only Free T4 was done: .85 with range at .75-1.54 or I'm missing some lab work
Dec 2011,
Free T4 1.08 with range at .75-1.54
Total T3 91 with range at 70-170
TSH 1.96 with range at .50-6.00

In labs when our GP was monitoring it I see TSH 3rd Generation, Free T3, and Free T4. Would they be called anything else? If not I'm going to have our GP draw up the bloodwork and provide the results the Endo.

Also if anyone can advise a book or some other ready which may help that would be great. I've been trying to understand this disease because I want to be able to help him. The message board to awesome but sometimes it's hard to filter through stuff.

 
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Old 04-24-2012, 03:48 PM   #9
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Re: Hashimoto & Extreme Joint Pain

Hashimoto's thyroiditis is an autoimmune disease that causes hypothyroidism.

While the test/result you posted for May 2011 doesn't seem to be thyroid-related, the FreeT4 results you posted for Aug and Dec 2011 tell a lot.

Healthy people have FreeT4 levels in the upper half/upper third of the range.

You can see that both his May and Dec results were below mid-range.

Based upon his lab's ranges, a healthy person (or properly medicated hypothyroid person) would have a FreeT4 level above 1.15 and most likely closer to 1.35. Some people would have an even higher FreeT4 level but, rarely any lower.

Your husband should be taking some thyroid hormone replacement (Synthroid being one of the most common types).

The fact that he is not receiving much-needed treatment for his thyroid could very well be exacerbating his issues...or causing them.

"Thyroid for Dummies" is a good book that covers the basics.
It confirms that the FreeT4 and FreeT3 tests are the best tests to evaluate thyroid function. Your GP has been running the right labs.

"What Your Doctor May Not Tell You About Hypothyroidism" is another good one.

And, the Thyroid Information sticky thread on here also has much useful information.

By the way, do you have the March 2012 results? Those would obviously be the most accurate.
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Old 04-24-2012, 04:48 PM   #10
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Re: Hashimoto & Extreme Joint Pain

Hi! I know that Lyrica is for nerve pain and is given to some people with fibromyalgia. Soma is a muscle relaxer. Soma and Percocet can be very addictive. he should be careful. I know the doc is trying to help him but if his thyroid levels were more towards normal like sammy said, he would feel a lot of these symptoms relieved..I hope he gets the help he needs with the thyroid issue.

 
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Old 04-24-2012, 05:05 PM   #11
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Re: Hashimoto & Extreme Joint Pain

After almost 5 years of dealing with thyroid disease, I just bought "The Complete Idiot's Guide to Thyroid Disease".....I'm very impressed with what I've read thus far.
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Old 04-24-2012, 05:16 PM   #12
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Re: Hashimoto & Extreme Joint Pain

that's funny sammy,first dummies, now idiots! LOL! You're far from either one...you just keep learning don't ya? Can you get it from the library? I just diagnosed someone at work and i was right...I gave her the thyroid for dummies book to borrow.

 
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Old 04-24-2012, 05:49 PM   #13
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Re: Hashimoto & Extreme Joint Pain

LOL Bran'sNana

I don't know about getting the idiot's book from the library - I bought mine from a popular online source. I got the book because forum members were talking about things they read in there and I was curious

I'll tell you this much, the section on hypothyroidism symptoms mentions people being diagnosed with fibro and they often had low-level hypothyroidism......this book would be a good thing to bring to the doctor's office - it's a lot harder for a doctor to dispute what's in print.
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Old 04-24-2012, 07:15 PM   #14
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Re: Hashimoto & Extreme Joint Pain

Yes, I've read too about the link with fibro, they did some kind of study where people with low FT3 were given a T-3 med and most were improved. That's why i have suggested it to some.

 
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Old 04-24-2012, 07:59 PM   #15
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Re: Hashimoto & Extreme Joint Pain

I believe "What Your Doctor May Not Tell You About Hypothyroidism" also mentions fibro possibly being a manifestation of undiagnosed/improperly treated hypothyroidism.

Since I've read so many books and have done so much research, it's hard for me to remember just exactly where I read certain things.

That's why I shared the fact that the idiot's book also mentions the topic.

Ahh..the power of suggestion.
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Old 04-24-2012, 10:20 PM   #16
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Re: Hashimoto & Extreme Joint Pain

Dr. John Lowe's work in fibromyalgia is ground-breaking and impressive. He determined it's actually faulty thyroid metabolism at work. T3 is the treatment.
Dr. Jacob Teitelbaum is also a well-renowned expert in the field.

Autoimmunity is the immune system gone amok... Where the body makes auto-antibodies that attack healthy tissue as if it were a foreign invader like bacteria or virus. Hashi's auto-antibodies attack thyroid tissue. You husband also might have a second autoimmune disease responsible for that severe degree of pain. There are over 80 identified AI diseases, such as rheumatoid arthritis, type I diabetes, multiple sclerosis, scleroderma, etc. Hashimoto's and Graves' are the two thyroid AI diseases. People who have one AI disease are predisposed to having others. I have two myself; Hashimoto's and immune thrombocytopenia, which is a blood disease.

While your husband would indeed benefit from prescription thyroid hormone treatment, he shouldn't stop looking for other reasons for such severe pain, which isn't likely to be solely due to Hashi's.

I hope you find answers very soon.
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Old 04-28-2012, 03:51 PM   #17
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Re: Hashimoto & Extreme Joint Pain

Quote:
Originally Posted by midwest1 View Post
Dr. John Lowe's work in fibromyalgia is ground-breaking and impressive. He determined it's actually faulty thyroid metabolism at work. T3 is the treatment.
Dr. Jacob Teitelbaum is also a well-renowned expert in the field.

Autoimmunity is the immune system gone amok... Where the body makes auto-antibodies that attack healthy tissue as if it were a foreign invader like bacteria or virus. Hashi's auto-antibodies attack thyroid tissue. You husband also might have a second autoimmune disease responsible for that severe degree of pain. There are over 80 identified AI diseases, such as rheumatoid arthritis, type I diabetes, multiple sclerosis, scleroderma, etc. Hashimoto's and Graves' are the two thyroid AI diseases. People who have one AI disease are predisposed to having others. I have two myself; Hashimoto's and immune thrombocytopenia, which is a blood disease.

While your husband would indeed benefit from prescription thyroid hormone treatment, he shouldn't stop looking for other reasons for such severe pain, which isn't likely to be solely due to Hashi's.

I hope you find answers very soon.

 
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Old 04-28-2012, 03:58 PM   #18
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Re: Hashimoto & Extreme Joint Pain

Thank you everyone for your helpful information. I'm going to look into those books so that it gives me a better understanding of what is going on.
Last week he had a flare up, his legs are swollen with fluid and he's in a lot more pain.
He is being treated with synthroid for the thyroid but like some of you have said the gland functions at different rates for people which totally makes sense. I'm going to have a GP pull past physical records before this started to see what the thyroid function was at.
We have an appointment with a Rheumotolist on May 7th so will see what happens from there.

Does anyone else get fluid built up in their legs when they have flare ups? And can you get flare ups when the thyroid is function normally-so the Endo says? Or this maybe another autoimmune disease? Just thinking out load if anyone has expercienced this.

Thank you again for all your help. It well appreciated!!!!!!

 
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Old 04-28-2012, 05:12 PM   #19
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Re: Hashimoto & Extreme Joint Pain

I wouldn't say I had "flare-ups"

I had edema virtually everywhere when my thyroid hormone levels were too low for me. The lower the levels, the worse the edema.

I was amazed at just how much bone definition I had lost when it finally returned after my levels were optimized.

Endos tend to think thyroid function is "normal" when the patient's thyroid hormone levels (FreeT4 and FreeT3) fall anywhere within the normal range. They are sorely mistaken...very, very much so.
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Old 04-28-2012, 05:19 PM   #20
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Re: Hashimoto & Extreme Joint Pain

Quote:
Originally Posted by m4torres View Post
I'm going to have a GP pull past physical records before this started to see what the thyroid function was at.
This is a very good idea.

Please be forewarned, though - there's a chance your husband was dealing with thyroid disease before it was detected.

His lab results will tell his story.

If you share them here (with ranges), we'll show you how to interpret them.
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