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    Old 04-11-2013, 09:43 AM   #1
    amylynns
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    Graves Disease Question

    I'll try and make this as short as possible. :-)

    Diagnosed in Nov.2006 with Graves Disease.
    Diagnosed in Jan 2007 with Rheumatoid arthritis.

    I was medicated for the Graves (after choosing to keep my thyroid). Went into what I believed was remission, no longer needed meds to keep thyroid levels in normal range.

    I'd notice symptoms over the years of Graves if I consumed alot of certain foods. (artificial sweetners for sure) My glands swell up in my neck and I feel achy all over, like I'm coming down with a flu, but then I'm fine again in a day or so.

    I'd also been taking meds for the RA, ranging from Plaquenil, Methotrexate, Enbrel and Humira. None really took pain away totally. Enbrel and Humira did nothing at all.
    I took myself all all meds about a year ago. Started working with a nutritionist and found I could control alot of the pain with what I eat/don't eat.

    So this year I had to change Dr's due to insurance changes. I started seeing a new rheumatologist who did a whole history/exam, x-rays, MRI's, labs and has officially stated that I was mis-diagnosed with RA. I do NOT have it.

    Hmmm?
    So, they sent me onto to an endo. just last week. He suspected celiac disease. He ran a slew of new labs.
    Next week (19th) I go for an ultrasound on my thyroid, it's very tender and hurts to swallow. And then I see him to go over labs.
    I get copies of all my labs on the hospital website and all I'm seeing abnormal is:

    Sed Rate (which has been high pretty much everytime I have had labs, since 2006) Mine was 24, with normal being 0-20

    ALT was 25, normal being 0-20

    And then ANTI-TPO ABS (THYROID PEROXIDASE)
    Mine was 161 with normal being 0.0 -9.0
    So obviously quite high.

    There were lots of others done as well.

    Just for reference, my thyroid labs were normal:

    TSH was
    2.62 with normal being 0.27 - 4.20 uIU/mL

    FT 4 was 1.29 with normal being 0.92 - 1.57 ng/dL

    So I guess what I'm wondering is....even though the Graves is what I figured as remission, could it still be causing issues with pain, fatigue, moodiness, sleep issues......and several other things??( I can list these if need be..) I just assumed all these years it was from the RA< and now that they're saying I never had it, I am beyond frustrated that I don't know what is causing problems. The pain (and exhaustion) is the main issue---my hands, legs, feet get really hot to the touch. If I'm stressed worse, if I'm not getting enough sleep, pain is worse. Normal daily pain is a level 3-4, really bad days it's an 8-9. I've literally been in some sort of pain every single day since 2006? What the heck???

     
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    Old 04-11-2013, 08:19 PM   #2
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    Re: Graves Disease Question

    Hi Amy,
    I cannot comment on graves as I have no experience in this but anti tpo is to the best of my knowledge the test used to diagnose hashimotos and it appears that you have this.
    Your TSH while certainly in range is still higher than people who do not have thyroid disorder, this is generally around 1.
    I have read a lot of people go from graves to hashi's and some people test positive for both antibodies.
    Symptoms between the 2 do cross over and joint pain is common in both.

    I thought RA was also diagnosed via tests? I am sure I was tested separately for RA lupus and thyroid antibodies when this all started as they are all in the family and I was having joint paint. I found magnesium really helped with joint pain though I was also on high doses of vit D3 OTC, not prescribed. Epsom salt baths are another great way of getting magnesium in and very relaxing and it helped ease my own discomfort.

    I am sorry I could not be of more help but I have no doubt someone on here will jump in soon who can comment on this with far more knowledge than I, if nothing else my response will bump back to the top!

     
    Old 04-12-2013, 12:32 AM   #3
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    Re: Graves Disease Question

    I would question how your RA was diagnosed to begin with. Up to 40% of people with RA have negative blood tests for it. (the RA factor). There is a more sensitive test available now called anti-CCP that could be run. If xrays show erosions of joints, that is characteristic of RA. A good rheum should be able to sort that out. It does appear that Hashimoto's is a problem, both from your TPO antibodies being high and the tenderness in the gland. The inflammation of thyroiditis can cause fatigue, as well as the gland becoming hypoactive as the antibodies destroy the gland. Your TSH is higher than optimal, and starting thyroid replacement may help with the fatigue. I would also want to rule out anemia with a blood count and iron deficiency with a ferritin, which can accompany antoimmune disorders and is a treatable cause of fatigue also. B12 and folate levels can help detect other deficiencies that can go along with autoimmune diseases and cause anemia/fatigue. So a search for all related potential causes of fatigue should be done to replace what is deficient. Suppressing the inflammation will help the fatigue too.

    Last edited by ladybud; 04-12-2013 at 12:34 AM. Reason: typos

     
    Old 05-02-2013, 09:03 AM   #4
    amylynns
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    Re: Graves Disease Question

    Thanks so much for your responses...Sorry it's taken me so long to get a reply back!
    I had about a mile long reply done one day and then my screen refreshed and it was gone.

    I too believe it's Hashimotos, but my Dr hasn't even brought that up. I tell you what, I am so disgusted with Dr's right now, I could just.....I don't know!

    Anyway--to answer some of your questions. The Dr who originally diagnosed the RA did so by physical exam, x-rays, and labs. I only saw this Dr once, then switched to one that was referred to me. ( I couldn't understand the original guy at all..didn't care for him) So the 2nd rheumatologist I saw (for 5 years!) also did labs every 6 months, 2 MRI's over that 5 yrs, and I saw him in his office every 6 months. I've gone back and gotten copies of all my labs. My orignical RA Factor was negative. But that Dr said sometimes it is...and later "shows up." I never questioned because I was in pain, and the RA diagnosis explained this pain. I'm still not sure how what he read is so different that what the University Hospital is now saying....but whatever I guess.

    You mentioned the anti-ccp test. I had that done January of this year. Mine was <8 with normal range being <17 So, normal.

    My rheum I saw for 5 yrs said the MRI's showed erosion. (I have the report from radiologist also)
    BUT...when I started seeing new rhem at the University Hospital, they said the bone erosion seen was not due to RA.

    You had asked also about being possibly anemic, etc.
    I just had all those labs done April 5th and those are all normal. The endo I'm now seeing suspected celiac. But now has said, nope, not that.
    So my Vit D is back in normal range, Vit B12 normal, Ferritin normal, Iron panel normal.

    So I saw the endo since I had last written here. I had an ultrasound of my thyroid, which found 2 small nodules. Dr not concerned. (8mm and 2mm)

    He's now testing me for Cushings Disease (which I don't believe I have...)

    I also had 2 more labs come back---which the Dr has not discussed with me.
    One was the TG antibody Screen. Normal range says <22. Mine was 319!?
    The other one is a Thyroglubulin, Tumor Marker. Mine was 19. I don't know what a normal range for this one is. It doesn't list it on the lab report.
    Any clues what these mean??? I've left a message for the endo, but have not heard anything back from him.....

    I had a bone density scan back in 2009, which showed osteopenia. I had another one done on April 19th, and it's progressed, but still in osteopenia range. My hips were about a -1.4 and my back was -2.4

    I'm only 40, and was 35 when this was showing up. WHY?? Isn't that kind of young? ( I could see if I'd been on steroids for years or something, but I haven't been. I was on them for 6 weeks back in 2006)

    I really believe all of this has something to do with the thyroid--I have pain when swallowing now, pain up into my neck, ears... The endo said it's not from the nodules, must be reflux. ?? I've had reflux and it feels nothing like this.

    When he calls (if he ever does) telling me the results of the Cushings test, I plan on pushing the thyroid issue.

    Thanks again for you time/input!

     
    Old 05-02-2013, 09:05 AM   #5
    amylynns
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    Re: Graves Disease Question

    I should note---I had the RA Factor test again in January and it was an 8. But I believe that's still normal range.

     
    Old 05-02-2013, 11:05 AM   #6
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    Re: Graves Disease Question

    The antibody levels being so high is a sign of Hashimoto's, and the associated inflammation in the gland is what causes the pain there. You can try anti-inflammatories like naproxen OTC for it. It helped me when I had it. The Iinflammation from both the RA and thyroiditis cause fatigue from the chemical byproducts of inflammation (cytokines and chemokines). Your TSH is in the range of early hypothyroidism (opposite of Graves) and I believe the fatigue would be improved if you were on thyroid replacement. I would ask the endo to do that for you. When your Vit D level was low, you probably weren't absorbing calcium well, which may have contributed to the osteopenia. Are you on a calcium as well as Vit D supplement now? Should be IMO.You might reconsider getting back on some RA treatment for the joint pain. RA causes joint destruction over time, so it is important to keep it under control.

     
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    Old 05-02-2013, 11:13 AM   #7
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    Re: Graves Disease Question

    The tumor marker result is normal if =/< 33, so 19 is fine, meaning nodules should be benign.

     
    Old 05-02-2013, 11:47 AM   #8
    amylynns
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    Re: Graves Disease Question

    Thanks so much ladybud! Can I just take you with me to see my endo!! LOL! I'm not always so good at being my own advocate....and with my crap insurance right now, I can't really shop around for a different Dr.
    But I'll do my best to get him to agree it's Hashimotos and to give me something for it!

    My Vit D level was an 11 about a month ago. Family Physician put me on 50,000 twice a day for 8 days. Now my level is 25. I am (and have been off and on for years, not always consistant....) taking a calcium and Vit D supplement.
    I know I've been told in the past my Vit D level is low--but never as low as it got this time.

    The new rheumatologist I'm seeing (or should say saw because she pretty much dismissed me) at the University Hospital is now saying I was mis-diagnosed and I DO NOT have RA. They ran all new labs, MRI's and x-rays and said my pain in NOT due to RA. (thus....trying to figure out what has caused this pain for the last 6 years..)
    So I won't be going on any meds for that....

    Do you think the Graves/ Hashimotos could be causing this pain? It's mostly in my hands, every day. But I have been trying to eat semi-vegetarian, no processed foods, etc...for several weeks now and it has helped the pain tremendously.

    And I don't know if this means anything---but I'll radomly get a rash, just on my hands. It's there now--doesn't itch, isn't painful---just looks ugly/weird. I've had this off/on for years as well.
    I don't know if I can post pics on here..?

    Thank you again for your response!
    OH, and thank you for putting my mind at east about the tumor marking lab...

     
    Old 05-02-2013, 12:00 PM   #9
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    Re: Graves Disease Question

    With your sed rate being high for a long time, and joint pain, I would ask if it is not RA, then what is it? Have you been tested for lupus? I would notice if the rash and pain get worse with sun exposure. The rash could also be biopsied by a derm, including immunofluorescent studies looking for a "lupus band" of immune depositis in the skin. Sometimes skin biopsies provide a diagnosis for a systemic illness. I think Hashimoto's can cause general aches but your pain sounds more like joint pain. It is so frustrating to get conflicting opinions-yes you do, no you don't have RA. One of them is wrong, and sometimes only time will tell.

     
    Old 05-02-2013, 12:17 PM   #10
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    Re: Graves Disease Question

    The Dr had mentioned Lupus once---but then didn't go any further with it, not really sure why?
    And that's exactly what I said...in tears--"If you're telling me for the last 6 years the pain I've had every.single.day...is not RA, what is it?"
    Their response, "I think we'll refer you to an endocrinologist.." UGH.

    Yes, the rash gets worse in the sun, moves up my arms--and gets itchy if I'm out in the sun for a long period of time.

    As far as pain and sun--if it's hot and humid, pain all over is much worse--but same with when it's SUPER cold outside, the pain all over is worse.

    I just need to move where the weather is perfect, all year round! (where is that?? )

     
    Old 05-02-2013, 12:32 PM   #11
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    Re: Graves Disease Question

    I would recommend that you look over the sticky notes at the top of the lupus board to review the signs and symptoms, both the criteria for diagnosis and alternative symptoms. Sun sensitive rash is one of the criteria. Perhaps if your endo is nice, he/she will run an ANA test while you are there. It is just a screening, but if positive, should be followed up with more specific antibodies. See if any other symptoms fit with your situation, and ask to get tested for it. If endo won't do it, rheum should. Just mention the sun rash.

     
    Old 05-02-2013, 12:41 PM   #12
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    Re: Graves Disease Question

    I will go look at the sticky notes.

    I had an ANA test done in January.
    ANA TITER 1:80 (POSITIVE) <1:40

    ANA PATTERN 1 SPECKLED
    ANA PATTERN 2 NONE
    ANA PATTERN 3 NONE

     
    Old 05-02-2013, 05:27 PM   #13
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    Re: Graves Disease Question

    I think since it was positive, it should be repeated with other related antibodies as well. Some Drs would prefer to ignore this level, but I think it is meaningful when combined with suggestive symptoms like you have. The levels will fluctuate some, so it will help to have more than a single result to go by.

     
    Old 05-02-2013, 08:28 PM   #14
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    Re: Graves Disease Question

    I got a response from the Dr this evening. this is what he said.

    The thyroid antibodies (TG and TPO) are positive in the vast majority of people with Graves Disease. The antibodies do not go away. So it is not surprising that they are still there. Graves disease is not particularly associated with nodules in the thyroid (thyroid gets big but not nodular). Nodules in the thyroid are very common, more so in women, more with aging. The appropriate follow up for these nodules is a repeat thyroid ultrasound in one year. If they are stable or smaller then no further evaluation. If greater then 1 cm, then biopsy. If bigger but not greater than 1 cm then repeat ultrasound following year.
    If you are still having pain on swallowing despite use of omeprazole I would suggest that you see an ENT doctor. You could discuss with your local doc who you could see locally or I could refer you to ENT here."
    Your Dexamethasone Suppression Test resulted in a cortisol of 0.5 which is completely normal and rules out Cushings Disease. Thus I am still unable to find a hormonal reason for your symptoms.""

    So....I sent him back a message stating the I feel it could be hashimotos and listed the symptoms I have that could go along with that.
    I asked if we could at least try a thyroid replacement med to see if it made any difference.
    I also told him I'm concerned with the osteopenia progressing, and the heart palpatations. The cardiologist wants to do an ablation procedure---but if there's any possibility that the irregular heartbeats are from the thyroid, I don't want that procedure. I'm on day 3 of 30 wearing a heart monitor (this is the 2nd time I've done this) to hopefully narrow down better what kind of irregular beats are going on. They said it was SVT's previously, but the meds prescribed didn't take care of it. I'm just dragging my feet having that procedure done.....

    OH--I looked at the pics of the rashes listed with the Lupus info. What I have isn't anything like those. Mine is much more mild than those. It's not really even raised, just like speckles/blotches on my hands/forearms.

    Ugh....thank you again for all of your responses. I really appreciate it!

     
    Old 05-02-2013, 11:10 PM   #15
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    Re: Graves Disease Question

    Just stepping into the conversation to tell you that SVTs, PVCs, and all kinds of cardiac arrythmias can be caused by thyroid disease... Either hypoT or hyperT. Here's the URL to a small study that agrees:
    http://www.ncbi.nlm.nih.gov/pubmed/2733316

    Heart arrythmia was my most worrisome symptom before my hypoT was diagnosed. I don't have it anymore, now that my thyroid has been optimally treated. I personally would not submit to ablation until the thyroid business has been sorted out.

    It's quite common for Graves' to 'turn into' Hashimoto's over time. You may be in that flux at the moment.

    The all-over pain is somewhat a murkier issue. Doesn't sound to me as if it's 100% thyroid-related for certain. But autoimmune diseases frequently run in multiples. It's more likely a second AI disease than solely thyroid, IMO. I hope you can figure it out, as it sounds miserable.
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