# Looks like they'll be adding fibromyalgia to my list of diagnoses. *sigh*



## Lauruffian (Jul 31, 2013)

My thyroid appears to be normalized now--my T3 and T4 levels are almost exactly in the middle, and my TSH is right around 2.3. My symptoms are worsening, though--severe body aches, headaches, ridiculous fatigue, mood swings, swelling hands, weak limbs, shaking, insomnia, IBS, funky brain fog and feelings of disorientation, etc. The rheumatologist suspects what the endocrinologist suspected--fibromyalgia. The rheumatologist cast a wide net in my bloodwork, checking literally dozens of levels and other antibodies, and everything--as she suspected the case--and nothing was positive except what he already knew (TPO-ab and rheumatoid factor).

My GP, endo, OB/GYN, and rheumatologist have all independently mentioned they suspect FM. So, *sigh*, looks like that's the case. I have to admit that reading up on FM, the symptoms are very, _very_ familiar--all of them.

At least we know which condition is causing the problem. Now we know which one to target for treatment.

Still...:sad0047:

I'm horribly achey and tired most of the time, and have reached the point I can no longer teach in the classroom. We'll see what the next few months bring.


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## sjmjuly (Mar 23, 2012)

Your TSH is still a little high for hashi's. I feel better when mine is below 2.0.


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## Lovlkn (Dec 20, 2009)

I agree that TSH is still high.



> my T3 and T4 levels are almost exactly in the middle,


Do you mean "free"? If you are in middle you may tweak that up slightly to see if you get relief.

How long have you been taking replacement med's and what dose are you on?

How long have you been on it?


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## StormFinch (Nov 16, 2012)

Laura that high B12 is still bugging me. Have you had a complete blood count and differential run with all the other tests they've put you through? Since B12 is water soluble it's hard to supplement out of range, and an elevated number is somewhat unusual. If I were you I'd have the B12 run again just to check, and ask that a CBC and differential be done if they haven't.


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## bigfoot (May 13, 2011)

Have you been tested for Celiac disease and gluten sensitivity (not one in the same)? I read through your list of signs & symptoms, and many of them sound very familiar. I have TPO Ab, but was negative for RA Factor.

The headaches, bad joint pain, neuropathy IBS, brain fog -- these all responded well to going gluten-free. I know it's not likely to be a catch-all or miracle cure here, but if your body is dealing with inflammation, there are things that might be stirring it up or making it worse than the baseline. Another thought is seeing an allergist and getting some testing done. Anything you can do to reduce the inflammation is a good thing.

Just as an example, you are taking Synthroid, right? Well, if you happen to have a gluten sensitivity... you should know that Synthroid likely contains gluten. And I think everyone is right; getting that TSH down a little more, and bumping up the Free T3 & Free T4 a hair might help, too. I don't know how open-minded your doctors are, but it would be interesting to see what a Reverse T3 test shows in your case. If it is really high, that can be indicative of inflammation, too. This also would likely mean that taking T4 alone isn't the answer.

Just brainstorming here... hugs3


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## Lauruffian (Jul 31, 2013)

I don't have my numbers in front of me--I got a phone call saying the numbers were pretty close to what they were in August (see my signature). While I know I may need to have the numbers adjusted, there does appear to be something else going on, and this is so early in my diagnosis--she doesn't want to change anything just yet. She explained how synthroid needs to be balanced; too much, and it can do damage. She's hesitant to bump me up when I've only been on it for less than three months. She's going to recheck my numbers in two months and go from there.

As for my bloodwork--the rheumatologist checked EVERYthing. ANA (and a host of other antibodies), CBC, metabolic panels, various vitamin and electrolyte levels, etc. Everything was in range except the rheumatoid factor, anti-TPO, creatinine/BUN ratio (which I guess means I was probably just dehydrated since the creatinine and such itself was fine), and the B12 was a tad high. The endo was not concerned about the high B12--it has barely high (by 20pts) and she attributes that to diet. It's not toxic, she said.

The rheumatologist is unimpressed by the RF and speculates maybe it's just weirdly high for me. I was negative for Sjogren's and Lupus, and I don't present at all like RA.

I want to leave it alone for a bit and see what the rheumatologist says in two weeks. I'm willing to explore fibromyalgia and the treatments that go with it, and then we'll see what my thyroid looks like in two months plus at my appointment in February.

Honestly, reading about fibromyalgia is sadly like reading about my life, particularly what I've read about exercise, sleep, body aches, unpredictable symptoms (it's not just every day that's different--things can change in a matter of hours), headaches, neurological symptoms (feeling like ants crawling through my hair, ugh) and "pushing through."

It's frustrating because I just want to feel better, and this is all a sllllooowwww process, but I do understand I need to give the synthroid time. Thankfully ALL of my doctors understand I'm just anxious to feel better.

I had my annual well woman exam on Monday, and my OB/GYN agreed that I present like her other fibro patients, particularly the pelvic pain I felt during the exam. She thinks I may have endometriosis :::headdesk::: as that runs pretty heavily in my family, but she doesn't want to treat that until my thyroid and fibro (or whatever) is controlled.

I really do appreciate your input, I do. I consider everything. Heck, I'm considering Lyme disease and MS too. It's all worth checking, it's all worth asking, and I'll try what makes sense to my doctors and me.

Heh...it's like the best advice anyone ever gave me about taking care of my horses for their various minor ailments: Try something. If it works, keep doing it. If it doesn't, try something else. 

I'll keep you updated.


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## Swimmer (Sep 12, 2013)

Wow I sure hope you're feeling better soon!! I hope you can find a "way of eating" to change or figure out possible allergens that your body doesn't like that can help you feel better -- You might want to look into the GAPS diet when you have some time to read. Take care! (There's a book on it) I'm just hoping there's wonderful help for you in unexpected areas! Hugs


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## Andros (Aug 26, 2009)

Lauruffian said:


> My thyroid appears to be normalized now--my T3 and T4 levels are almost exactly in the middle, and my TSH is right around 2.3. My symptoms are worsening, though--severe body aches, headaches, ridiculous fatigue, mood swings, swelling hands, weak limbs, shaking, insomnia, IBS, funky brain fog and feelings of disorientation, etc. The rheumatologist suspects what the endocrinologist suspected--fibromyalgia. The rheumatologist cast a wide net in my bloodwork, checking literally dozens of levels and other antibodies, and everything--as she suspected the case--and nothing was positive except what he already knew (TPO-ab and rheumatoid factor).
> 
> My GP, endo, OB/GYN, and rheumatologist have all independently mentioned they suspect FM. So, *sigh*, looks like that's the case. I have to admit that reading up on FM, the symptoms are very, _very_ familiar--all of them.
> 
> ...


Have you been tested for Lyme Disease and Epstein Barr Virus?


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## Swimmer (Sep 12, 2013)

That's a great question Andros!!

From what I understand the current lyme disease testing only tests for one strain -- it does not test for all the other infections/parasites you can get from ONE bite of a tick.

I believe Katie Couric's new talk show had a great episode on lyme disease.


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## Andros (Aug 26, 2009)

Swimmer said:


> That's a great question Andros!!
> 
> From what I understand the current lyme disease testing only tests for one strain -- it does not test for all the other infections/parasites you can get from ONE bite of a tick.
> 
> I believe Katie Couric's new talk show had a great episode on lyme disease.


Yeppers!! We are on the same page Swimmer. I missed that program; wonder if it will re-run?

Thank you!


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## Lovlkn (Dec 20, 2009)

> She's hesitant to bump me up when I've only been on it for less than three months. She's going to recheck my numbers in two months and go from there.


It takes 6 weeks for levothyroxine replacement to give a fairly accurate view of thyroid function - your doctor is going to wait 2 months - while you are symptomatic - does not make any sense to me.

Your TSH alone points to not enough thyroid hormone - your lab with out range is tough to read but I believe that is still below mid range for most FT-4 tests.

Most to all of my "other issues" resolved once my thyroid was removed and my replacement got me into 1/2 range to slightly higher for both FT-4 and FT-3.

Find a new doctor or get creative on how to raise your dose ;-)


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## pomee (Aug 27, 2013)

Hi there, I just had fibromyalgia added to my list of diagnoses too.
So I now have Hashimotos (diagnosed in Oct. 2012), FM, BPP Vertigo, migraines, gluten sensitivity, iron deficiency anemia and a weird wrist problem called De Quervain's tenosynovitis. 
I didn't realize Synthroid is not gluten-free, so I'll have to check into that. I'm taking the generic version (Levothyroxine).
I keep worrying that there's something else going on since they've had to increase my Synthroid 3 times this year and I've had all these other weird health things crop up, too.
I started out on 25mcg, was upped to 50mcg in May, 75mcg in July and 88mcg last week. 
My endo sort of vaguely referred to gluten sensitivity/celiac being a possible cause of my numbers going up, but not sure how/why and she's ignored my emails asking for more information after I was diagnosed with gluten sensitivity (tested for celiac, results aren't back yet.
It's pretty frustrating getting yet another diagnosis (FM) on top of all the other stuff. Good luck and I hope you're feeling better soon!


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## bigfoot (May 13, 2011)

pomee said:


> I didn't realize Synthroid is not gluten-free, so I'll have to check into that. I'm taking the generic version (Levothyroxine).


Every time I take Synthroid, I have a near-immediate flare-up of signs & symptoms. It's very well possible that the crucial medication you are taking for thyroid is working against you in some ways.

And the generics can have gluten, too. In fact, you should definitely look into going onto a brand-name only thyroid med that is GF. I've had too many doctors and pharmacists, not to mention the wonderful folks here, mention that generic thyroid meds can/will vary in potency, fillers, and so forth. I believe the FDA allows them to have up to a 10% shift -- so the generic 50mcg of T4 you might be getting this month could wind up being 45mcg or 55mcg next month on a refill. With other meds that might not be a big deal, but for those of us with thyroid problems, it can really be noticed.

Brand-name Levoxyl (T4) was gluten-free, but that got recalled until 2014. Other brand-name meds besides Synthroid (T4) include Unithroid (T4), Tirosint (T4, no fillers), Armour (T4/T3), Nature-Throid (T4/T3), West-Throid (T4/T3, hypoallergenic). Barring all of that, you could go through a local compounding pharmacy and have them custom make something for you, taking into account any allergies or sensitivities.

:hugs:


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## pomee (Aug 27, 2013)

Thanks Bigfoot, that's so helpful. At this point, the endo and everyone else is wondering why my numbers keep yo-yoing. I wonder if it's because my body's rejecting the pill?


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