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    Old 09-10-2013, 05:02 PM   #1
    CrownJewel84
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    Exclamation Graves/Hashi's/Lupus?

    I am new to this board, and would like some opinions regarding my current situation. I was dx with graves in 2005. Had every hyper symptom imaginable, labs showed ana positive,
    Tsh: 0.025 (0.350-5.500) , triiodothyronine free : 10.9 (2.3-4.2) , thyrotropin receptor Ab: 2.5 (> 1.5) , free t4: 3.75 (0.61-1.76) , tpo: 108 (0-34) , iron: 204 (35-155). I took tapazole and inderal, after 2 years of treatment I went into remission and stopped meds in 2007. After the birth of my son in 2010 my graves reappeared and I resumed treatmemt for a year. I have not been on any meds since 2011 and have not had my thyroid tested until August of this year when my obgyn did my yearly exam. Labs as follows: 7/18/13

    Hemoglobin: 16.5 (12.0-16.0)
    Hematocrit: 48.7 (36-48)
    Triglycerides: 211 (<150)
    T4-thyroxine: 5.8 (4.5-12.0)
    T3 uptake: 27.8 (23-36)
    Fti: 1.6 (1.1- 4.4)
    Ft4: 0.93 (0.71-1.85)
    Total t3: 1.00 ( 0.60-1.81)
    Tsh: 0.332 ( 0.350-5.500)

    He repeated labs again on 8/26/13

    T4 thyroxine: 8.2 (4.5-12.0)
    T3 uptake: 32.7 (23-36)
    Fti: 2.7 (1.1-4.4)
    Ft4: 1.19 (0.71-1.85)
    Total t3: 1.60 (0.60-1.81)
    Tsh: 0.016 (0.350-5.500)
    Ast(liver panel): 28.0 (10.0-25.0)

    I am having all sorts of symptoms: fatigue, loss of words while talking, chest pain, palpitations, shaky hands, tired but trouble sleeping, anxiety, dry eyes, poor concentration, rash on hands, face (across nose and cheeks), arms, feet, scalp, all of which are worse after shower or sun exposure, blood in urine (mild spasms on lower left abdomen), hurt all over. I was also dx with cervical disk disease c5-c6 and currently take reprexain for it. As for skin, I am using elocon. Had biopsy a few weeks ago and derm just said she believes is contact dermatitis although I am careful with soaps, what I touch, etc, but had my pcp do bloodwork for lupus on 8/30/13

    Wbc: 6.7 (5.0-11.0)
    Hgb: 15.8 (12.0-18.0)
    Hct: 45.1 (36.0-55.0)
    Platelets: 279 (140-450)
    Sed rate: 5 (0-20)

    My pcp also sent me for a thyroid ultrasound because the right side is inflamed, but nurse called this morning and sait ultrasound is normal, no further action neccessary. I have an appt scheduled for Oct. 17 with an endo but wonder what will be done. Do you think according to labs I need to get back on tapazole and inderall or have them look into the possibility of an overlap of another autoimmune disease? I am so lost and suffering tremendously. I just want to feel better Any help appreciated!

     
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    Old 09-10-2013, 05:35 PM   #2
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    Re: Graves/Hashi's/Lupus?

    First welcome to the boards. I do not think you need Tapazole again. Your levels are not hyper, even though your TSH is low. I do think another autoimmune disorder needs to be looked for, particularly lupus, because of the sun sensitivity and rashes, one across your nose and cheeks, and blood in urine. The 2nd batch of tests were not specific at all for lupus. Your ANA should be repeated, plus an anti-ds DNA and anti-Smith antibody should be done on blood. You should also have a workup for the blood in urine. A rheumatologist is your best bet for getting all that done, plus a kidney specialist. It is also curious that your hemoglobin, hematocrit and iron level are high, which is opposite what you would expect with lupus. There is an uncommon disorder called hemochromatosis that involves excess storage of iron in many tissues, including liver (your AST was a little high), joints (causing pain and arthritis) thyroid problems and eventually diabetes. You can be screened for it by a ferritin level on blood, which reflects stored iron, plus a transferrin saturation %. It can cause severe damage and death over many years if not identified and treated. It is usually hereditary, but often goes undetected for a long time. Any of your Drs can run a ferritin and transferrin saturation rate. If high, you should see a hematologist. I hope this helps. I think your thyroid is not so much a problem, but small doses of Inderal may help your palpitations as long as BP and pulse rate aren't too low.

     
    Old 09-11-2013, 08:09 AM   #3
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    Re: Graves/Hashi's/Lupus?

    Quote:
    Originally Posted by ladybud View Post
    First welcome to the boards. I do not think you need Tapazole again. Your levels are not hyper, even though your TSH is low. I do think another autoimmune disorder needs to be looked for, particularly lupus, because of the sun sensitivity and rashes, one across your nose and cheeks, and blood in urine. The 2nd batch of tests were not specific at all for lupus. Your ANA should be repeated, plus an anti-ds DNA and anti-Smith antibody should be done on blood. You should also have a workup for the blood in urine. A rheumatologist is your best bet for getting all that done, plus a kidney specialist. It is also curious that your hemoglobin, hematocrit and iron level are high, which is opposite what you would expect with lupus. There is an uncommon disorder called hemochromatosis that involves excess storage of iron in many tissues, including liver (your AST was a little high), joints (causing pain and arthritis) thyroid problems and eventually diabetes. You can be screened for it by a ferritin level on blood, which reflects stored iron, plus a transferrin saturation %. It can cause severe damage and death over many years if not identified and treated. It is usually hereditary, but often goes undetected for a long time. Any of your Drs can run a ferritin and transferrin saturation rate. If high, you should see a hematologist. I hope this helps. I think your thyroid is not so much a problem, but small doses of Inderal may help your palpitations as long as BP and pulse rate aren't too low.
    Thank you for responding. As far as the blood in urine, that has been occuring on and off for a year. Last time that happened I went to a urologist who did a cytoscopy and results were normal. That was end of 2012 I believe. Nothing further done about it other than antibiotics when it comes back. Then one time I had blood in stool and had a colonoscopy done which was also normal. Still don't have answers. My hgb and hct are normal now, do you know the abbreviation for ferritin? I may have that on my labs, not sure what it would be labled as. My Dr's office called yesrerday saying thyroid ultrasound was normal but called again this morning setting up an rai uptake scan? Why would they do this if u.s. normal? My dermatologist was the one who requested I be tested for lupus, and my pcp thinks she tested me for it by labs previously posted. I don't know anything about lupus or its testing. My derm also did a biopsy of my hand and just said she believes it is some sort of contact dermatitis, which I don't believe because none of the creams ever help and I only use soaps and shampoo she reccommended, plus it's on my face, arms, hands. Will have a patch test done in two weeks.
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    Old 09-11-2013, 08:49 AM   #4
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    Re: Graves/Hashi's/Lupus?

    I think the blood in urine needs workup by a nephrologist. That is a common sign in lupus. The derm should do another biopsy with immunofluorescent studies to look for a lupus band, a layer of immune debris that gets deposited between the layers of skin. Without the immuno. tests on biopsy, it won't tell you anything. The scan reveals function of the thyroid rather than anatomy. So the ultrasound and scan measure 2 different things. You really need a rheumatologist. I would take a picture of the rashes you get on your cell phone, and show them to rheum in case they are not present when you have app't. I would also research lupus, as you have several symptoms suggestive of it. Early recognition is important, especially when the kidneys are involved.

    Last edited by ladybud; 09-14-2013 at 12:27 AM. Reason: typo

     
    Old 09-11-2013, 01:47 PM   #5
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    Re: Graves/Hashi's/Lupus?

    I just got home from my obgyn, I got my implanon removed because dr wants me to try the pill to ease spasms on lower left side. Not sure if this will help. BUT, they did discuss my symptoms and want to set me up to see and endo and a rheumatologist. They agreed the labs ran by my pcp were not specific enough. Should have an appt in the next few weeks, fingers crossed! Maybe they can check urine there? My daughter was diagnosed with juvenile arthritis right before her 4th birthday (she will be 5 soon). She sees a pediatric rheumatologist at Vanderbilt. My son is 3 and he has to take iron supplements. I never even considered it could have started with me. I have only ever dealt with thyroid issues. Maybe soon I will get some answers, although I know it can take forever for a diagnosis. I will talk to my derm in a few weeks and ask if she did the immuno, I never got a copy of the report, will ask for that too.
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    Old 09-12-2013, 01:08 PM   #6
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    Re: Graves/Hashi's/Lupus?

    Ok, this morning I when I woke up I sat up in bed and immediately my mid upper back on left side was killing me. It felt like a catch and stabbing all at the same time. So I went to my pcp and they did a chest xray and told me there was a shadow where I am hurting. I asked if it was pleurasy and she said it could be a cracked rib. Seriously!?! A crqcked rib from sitting up in bed? So she sent me to the I'maging center to have a more un depth xray of my ribs. Should hear back tomorrow, I got a steroid injection, muscle relaxants, and anti inflammatory meds.
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    Old 09-12-2013, 01:47 PM   #7
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    Re: Graves/Hashi's/Lupus?

    People with autoimmune disease get osteoporosis and fractures more easily. If it is a fractured rib, I would ask to get a bone density test done to check for it. If it is pleurisy, that would support the diagnosis of an autoimmune disorder like lupus, as pleuritis (inflammation) is one of the major symptoms, and having it show up on an xray is good objective evidence, as it often causes considerable pain but shows up on nothing, leaving Drs confused and doubting that there is anything wrong.

    Last edited by ladybud; 09-12-2013 at 01:48 PM. Reason: added

     
    Old 09-13-2013, 10:55 AM   #8
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    Red face Re: Graves/Hashi's/Lupus?

    Dr just called and said I do not have a cracked rib but the imaging center also saw a suspicious area on my left lung and want to come have a ct scan with contrast next Wednesday. I was supposed to have the radioactive iodine uptake scan Mk day and Tuesday, so she is going to call and see if I can go 3 days in a row with contrast. I asked if she hadany idea what it could be and she said not until asfter ct. Ugh!
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    Old 09-13-2013, 02:24 PM   #9
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    Re: Graves/Hashi's/Lupus?

    I went to Dr yesterday with chest pain in back, after their xray they sent me to the imaging center for more in depth xray of ribs. They called this morning and confirmed there is a suspicious shadow on left lung where I am having pain. I am having the RAI Uptake Monday and Tuesday and then a CT with contrast on my lung Wednesday. I really hope it's nothing.
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    Old 09-13-2013, 02:31 PM   #10
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    Re: Graves/Hashi's/Lupus?

    Also, they said it is not a cracked rib. I am only 28, and too young for all of this.
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    Last edited by CrownJewel84; 09-13-2013 at 02:33 PM.

     
    Old 09-14-2013, 12:22 AM   #11
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    Re: Graves/Hashi's/Lupus?

    You are right that at 28 you should feel well not sick. Consider the chest problem may be a blessing in disguise. If the CT scan shows a pleural inflammation or effusion, a collection of fluid where it hurts, it would provide additional evidence to support an autoimmune disease. Granted, you don't want to have one, but your symptoms certainly are adding up to that, and the sooner it is identified, the sooner you get treated and feel better. As for the ferritin, there is no abbreviation, and I sincerely doubt that one was run. The other common cause for high hemoglobin and HCT is low oxygen levels, so I would suggest they check your oxygen saturations with finger probe when you go to Dr, and perhaps get a 24 hr pulse oximetry done to screen for sleep apnea, common in lupus. The CT will rule out any underlying lung pathology. I would start asking for written copies of all your labs, xrays, CT scan, etc for your records and to take with you when you see specialists. I also would try to find out high your ANA level was. A skin biopsy should be repeated if the immunoflourescent studies weren't done, as that is essential for picking up lupus. You have a complex situation going on, which is very overwhelming for a young mother of 2 kids. Autoimmune disorders are among the most complex illnesses. The more you learn about this (in all your spare time-ha!) the better off you will be. I developed lupus when I was about 30, had 2 small children, one with ADHD and quite a handful, so I understand how discouraging and exhausting this is. I would have a serious discussion with your husband and family and ask for their help in the way of support, time, babysitting to give you a break, and be honest about what you are going through and how difficult it is. Once you get diagnosed and treated, things will get better, but may be a slow process. I would start keeping a timeline of events to make your health history accurate chronologically and concise. I hope you get a good rheum. who is knowlegable, listens, and takes a stand on what is wrong. You will need to be your own advocate, so muster up all your strength, get help from others, and you'll get through this. You are certainly not alone in your struggles.

    Last edited by ladybud; 09-14-2013 at 12:24 AM. Reason: corrected age

     
    Old 09-18-2013, 10:08 PM   #12
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    Re: Graves/Hashi's/Lupus?

    Update: RAI Uptake Scan was consistent with hyperthyroidism. Have not had labs repeated yet. The Chest CT with Contrast revealed a 7.5 x 7 mm tumor. However, they do not believe it is causing the pain in the same area as the tumor. Radiologist said he compared the CT to to an old xray from 2010 and that the tumor had not grown therefor is believed to be benign. However, I called the last known place where I had chest xrays and got copies ranging from 2011-2013 all of which are unremarkable. I ended up at the emergency room tonight due to my still experiencing pain in back, chest, and new arm weakness and chills. Ekg normal, bloodwork normal, and urinalysis normal even though there is pink on tissue when I wipe. The er doc said he consulted radiologist who wrote my CT report, he said the tumor may have been origianlly missed on the xray from 2010 that he was comparing, explaining why I was never informed of such an issue. I can't get in to see my primary dr until a week from now. I am so confused, and in pain, I feel like all my drs think I'm crazy. Ugh! Still taking anti inflammatories and pain meds, nothing helping.
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    Old 10-24-2013, 02:54 PM   #13
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    Re: Graves/Hashi's/Lupus?

    Ok my primary dr says we are going to recheck lung tumor in Dec. Endo gave me a choice of RAI or Methimazole, I chose methimazole. Currently taking 10mg tablet twice a day. Will be rechecked in 6 weeks. Rheumy says all labs were fine except anti tpo was high 163.3 (<=12.0). He mentioned that since my thyroid is out of balance it can have an effect on other labs amd said other antibodys may be hiding in bone marrow. Not sure what this means. He said come back in 6 weeks when hopefully my thyroid will be leveled out and he will retest. Other labs he did as follows.

    Anti HCV 0.21 (<=0.80)

    Anti CCP <0.50 (<=5.00)

    Anti TG 6.7 (<=34.0)

    Anti TPO 163.3 (<=12.0)

    RNP Antibodies 0.3 (0.0-0.9)

    Smith Antibodies <0.2 (0.0-0.9)

    Sjogren's Anti-SS-A <0.2 (0.0-0.9)

    Sjogren's Anti-SS-B <0.2 (0.0-0.9)

    HLA-B27-negative

    ACE 66 (12-68)

    Antiscleroderma-70 Antibodies <0.2 (0.0-0.9)

    Anti-DNA (DS) Ab Qn <1 (0-9) (negative <5)

    ANA IFA negative (has been positive back in 2005)

    He says I don't have enough proof in labs to confirm a diagnosis and slap me with a label of lupus. Will check again when thyroid labs return to normal. I am so frustrated!
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    Old 10-24-2013, 03:43 PM   #14
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    Angry Re: Graves/Hashi's/Lupus?

    Ok my primary dr says we are going to recheck lung tumor in Dec. Endo gave me a choice of RAI or Methimazole, I chose methimazole. Currently taking 10mg tablet twice a day. Will be rechecked in 6 weeks. Rheumy says all labs were fine except anti tpo was high 163.3 (<=12.0). He mentioned that since my thyroid is out of balance it can have an effect on other labs amd said other antibodys may be hiding in bone marrow. Not sure what this means. He said come back in 6 weeks when hopefully my thyroid will be leveled out and he will retest. Other labs he did as follows.

    Anti HCV 0.21 (<=0.80)

    Anti CCP <0.50 (<=5.00)

    Anti TG 6.7 (<=34.0)

    Anti TPO 163.3 (<=12.0)

    RNP Antibodies 0.3 (0.0-0.9)

    Smith Antibodies <0.2 (0.0-0.9)

    Sjogren's Anti-SS-A <0.2 (0.0-0.9)

    Sjogren's Anti-SS-B <0.2 (0.0-0.9)

    HLA-B27-negative

    ACE 66 (12-68)

    Antiscleroderma-70 Antibodies <0.2 (0.0-0.9)

    Anti-DNA (DS) Ab Qn <1 (0-9) (negative <5)

    ANA IFA negative (has been positive back in 2005)

    He says I don't have enough proof in labs to confirm a diagnosis and slap me with a label of lupus. Will check again when thyroid labs return to normal. I am so frustrated!
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    Old 10-25-2013, 06:27 PM   #15
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    Re: Graves/Hashi's/Lupus?

    Since you are having chills, I would take your temp about 1-2 hrs after the chill and see if you are running a fever at all. The ANA can e positive in Hashimoto's, but that doesn't explain your chest pain, arm weakness, chills, etc. When your thyroid calms down, some of this may improve, and if not, I would ask to have a sed rate, CRP, and complement levels checked for evidence of inflammation and immune reactions.

     
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