Hashimoto's and muscle pain

[Wr1te1]

I've had muscle & joint pain for many years & knew it was my thryoid but only recently have finally been diagnosed with Hashimoto's Thyroiditis. I now also have hypothyroidism. I've had back pain for many years which is why I became a personal trainer & fitness instructor to fight the pain. I am 36. In the last so many years the pain was not just in my back but in ALL my muscles & joints all over my body including my intercostals, my skull, my ribs, feet, along my spine, you name it. I hurt all the time & it is very hard anymore for me to teach classes with a smile on my face trying to hide my constant pain. No matter where you can touch me on my body there will be a knot... My heart also hurts, either muscle pain in my chest near or directly around my heart, or muscle spasms in my back so severe that it goes through my body & hurts in my heart. And I stay SO tired! My endo said that my constant fatigue & muscle problems couldn't be just from my Hashimoto's, that I probably have another problem. My regular doctor is leaning toward fibromyalgia. I am at a standstill for now till my husband gets insurance again & can go to a rheumatologist. My thyroid levels aren't under control yet. Currently I'm taking 75mcg of Synthroid. Sometimes it hurts so bad in my side that I'm not sure if it's muscle or if could be an organ.  I even get spasms in my bladder! Can Hasimoto's cause this severe form of muscle pain all over my body?? I'm taking muscle relaxants and anit-inflammatorys twice a day with no relief. And also my endo suspected that I could have EBV virus & tested me for that -- I had mono at 15. My EBV Ab VCA, IgG level was 2786 (normal is 0-99) and my EBV Nuclear Antigen Ab, IgG level was 1104 (normal is 0-99). Does this mean anything?? No doctor is able to answer that for me nor able to give me any other answers or help. Please Help! This pain is literally killing me! Also my husband wants to have a baby so bad. Do you think it could ever be safe for me??

[Mark Lupo, M.D.]

From a thyroid standpoint, best advice is to make sure the TSH is kept in the 0.5-2.5 range on the levothyroxine.  Adding T3 therapy has no proven role, but benefits the occassional patient.  Rheumatology evalutation is the next step.  Doubt adrenal insufficiency, but an am cortisol (blood) level may be helpful to screen for this -- ask your endo if not already done or if this is appropriate in your case.

[Wr1te1]

Oh bless your heart!! I can certainly relate to your frustrating symptoms. As a personal trainer & instructor it is hard for me too to accept all this. My body is betraying me! Just out of curiosity, did they check your thyroid peroxidase for possibly Hashimoto's?? (My mother had abnormal bleeding with pain like that & she ended up having a condition where she has many many cysts on her ovaries. She's also a nurse. The doctor told her they could try to remove or she could have a hysterectomy(sp?). They put her on hormomes due to her being menopausal & she's trying the herbal route to see if it helps before going to surgery. And I myself have problems with cysts on my ovaries. I've had 2 to rupture - it was very painful & I bled with each for over a week... have you had problems with cysts??)
Yes -- I too feel as if I in my 50's or 60's, it is just terrible to deal with at our age!! If you figure anything out, please let me know... I'll keep searching myself.
Hang in there and good luck!!

[Ti0210]

I find this very strange but you have explained that last 4 1/2 years of my life. I'm the same age as you and I also had Mono at 15. I have been to many doctors and even spent a week at the Mayo Clinic and they cannot figure out why I have the severe muscle pain. My TSH has always been normal, however my T3 & T4 alternate being elevated. I have gained 80-lbs because I also have an elevated heart rate and shortness of breath. The combination of the symptoms makes it difficult to exert myself in anything. I'm a registered nurse and it is very frustrating to me that I cannot figure out what's going on with my body. I'll be 35 next month and I feel a 50-year old with many ailments (no offense to anyone). My white blood cells are elevated, my sed rate is elevated and my crp is very elevated; it goes as high as 49 but I still don't have any answers. Most recently I have started with abnormal vaginal bleeding and cramping. It has been every day for 2 months now. I look forward to answers someday. I miss the real me :)

[Wr1te1]

Thank you so much for sharing your story & your encouragement! I will not give up hope nor give up till I finally get the whole truth. I too was a single mom for many years & only recently remarried so I know exactly what you mean! This Sept. makes our 2-year wedding anniversary and we really want to have a child some day (if my body will let me). I already have a 13-year old daughter and she's a joy of course. Yes, it would be impossible for me to quit my job too -- I'll get to the bottom of it yet & I'll know what to do I'm sure when the time comes. Until then I'll keep pedaling...

Thanks again & good luck to you as well!!

[Wr1te1]

The last time my TSH level was checked it was 2.02 & two months before that it was 1.066. Don't understand that. The Free T4 was only .4 & two months before that it was 1.10. It seems to me that the numbers seem to move around a lot. My Thyroid Peroxidase level being so high initially was the red flag for Hashimoto's...

Yes I have looked up Fibro & even though I do hurt in all the points I really still hope that I do not suffer with that. But if I do, at least I would know finally the truth! I'm so discourged with doctors. I've been poked & prodded quite a bit but I do not think that my calcium level has ever been tested. I'm remember that when I go back to the doctor. Thank you so much for your input! It was very helpful!

[laura1967]

Hi there....I have hypothyroidism and just recently found out it is due to Hashi's. Also, I crashed with epstein-barr virus 4 yrs ago. I first had mono when I was in 3rd grade. My body hurt all over for a while when I was in acute stage of epstein barr. But, as my thyroid has gotten worse, my body pain has gotten bad again. Unfortunately you are getting a double whammy!! Poor thing...I definately feel for you! Both auto immune conditions can be debilitating. You are going to have to give your body a break so it can start to heal. My endo 4yrs ago that finally diagnosed the active epstein barr, handed me disibility papers and told me it would take about 5 yrs for it to burn itself out and go into remission. I told him no way could I go on disability...I am a single mom. So from there the struggle to survive and heal began....it is very hard, but with the right support system you will make it. I think the hardest part was learning how to allow my body to heal....I was very active like you. Would not suggest having baby quite yet....you need to heal first. Feel free to email me at any time!  Keep you chin high and think positive.

[hypofuzz]

Oh, about having a baby...again, no expert, but doctors like to keep your TSH below 2.5 while pregnant, and preferably when you start trying to get pregnant.

[hypofuzz]

In reading about Fibromyalgia and Chronic Fatigue Syndrome (which also includes pain), I learned that there is often a link with those conditions and high antibodies to EBV.  Some doctors also believe that Fibromyalgia and Chronic Fatigue Syndrome are forms of subclinical hypothyroidism.  
What is your TSH currently? Different people have very different types and degree of symptoms with hypothyroidism, but with such severe pain, you really want to check out all possibilities before assuming it's thyroid related.  
With Fibromyalgia, there are specific pain spots, called tender points on the body.  Google it and see if that's where your pain is.
Have you had your calcium levels checked?
I'm not a doctor, so I can't give a complete list of possible causes, but am just passing on what I've read.
I really wish you the best of luck in figuring out what the cause is so that you can hopefully get back to a pain free life.