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Headed to rheumy to diagnose me.

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Old 02-07-2013, 08:57 PM   #1
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Join Date: Sep 2007
Location: Florida, USA
Posts: 36
Sweetie31 HB User
Unhappy Headed to rheumy to diagnose me.

Hi all,

I am new to the board & was told I had FM that I was able to manage years ago until I got diagnosed with thyroid cancer & had my thyroid removed and had rai therapy. Since 9/2011 my body has gone's my issues..Gerd,Ibs, muscle pain, weakness, chronic fatigue, sleep disturbances either hard to fall asleep & stay asleep or not feeling rested upon waking. Frequent headaches, memory loss, forgetfulnessb& fogginess, terrible periods, anxiety, aches & pains over all kinds of areas with frequent episodes of chest pains (costeochondritis) new diagnosis of anemia...legs fall asleep easy, stiffness in the morning ..I am sure I am missing something?..thyroid doc says my thyroid labs are witching ranges & yet I still feel this bad since! I have a 2 yr old & I'm sick of being ca complainer or sick.

Please tell me your thoughts on my symptoms....what do u think? Yes? Currently taking lexapro 15 mg daily, Xanax as needed for sleep & panic attacks. Tylenol #3- 2 or 3 a day for daily pain. On this I have been able to function pretty well except when I overdue with muscle use but my PCP thinks we' re putting a bandaid on something?

What can I expect at my first rheumatologist appt.? I do not wish to be a guinea pig trying lots of drugs because I have a little 2 yr old girl at home. In the past I was tried on Wellbutrin, neurontin, cymbalta, Celebrex ...I can't handle the neurontin & had worse anxiety on the other 2 and allergy to celebrex.
I kinda felt comfortable with my meds now except occasional flare ups but not sure what this doc does?
Any advice or tips for my first visit? What should I expect? What are your treatment methods?
Thanks in advance !

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Old 02-08-2013, 06:16 AM   #2
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Re: Headed to rheumy to diagnose me..

hi and welcome,
on the road today so no time to fill you in. be back sunday, till then breath and relax. you will be stuck trying different meds till you find your balance and what works for you. each of us is different.
must run, so sorry.
each rheumy is different. if you don't like him fire him and get another. be sure you trust the doc. it matters alot.
when faced with something you cannot control peace lies in self education and adaptation to the situation.

Old 02-08-2013, 07:25 AM   #3
Join Date: Jan 2013
Location: Greeley, CO, United States
Posts: 20
Stufftie HB User
Re: Headed to rheumy to diagnose me.

Hey Sweetie31!
I recently returned from a rheumy for fibromyalgia testing, which I utterly failed! Even though my thyroid numbers are within range, I believe that I am being under treated. The rheumy prescribed a different medication for hypothyroidism, something I could NEVER get my primary to do. I will slowly increase it as time goes on and find a new primary that is thyroid savvy.

Unless I missed it I didn't see any thyroid medication listed? If your thyroid is removed this is EXTREMELY important.

I suffered from exhaustion, light headed days (my flu days as I referred to them) severe muscle cramps from legs, arms, to shoulders. Each month I would have 2 - 3 days of severe stabbing pains that would last 2 - 3 seconds, some bringing me to tears. Each month everything would worsen, add new symptoms, and I ended up with no pain free days. The "good" days it would feel like something pinching my muscle all over my body, with the tight muscle cramping. My bones would ache and throb, worse in the evening.

I have only been on the increased/different thyroid medication for two days but my legs and arms are 90% better already. But, could just be the cycle of my pain, it is always worse a week and a half before my monthly is due. Patiently waiting!

At the rheumy he went over all my symptoms. He had me change my pants to some awesome paper shorts Reflex test on arms, legs, feet. Felt all my joints. Pressed (not hard, but not soft) in tons of locations on arms, legs, neck, back, hips etc...I would either say painful, uncomfortable, or no pain.
I have already had a ton of blood work done, so there was nothing left for him to test for. If they don't have a electronic copy of your blood test bring a paper copy! I was surprised that my primary's office didn't send everything! Thank goodness I pack a folder with all my bloodwork, etc.

I am happy that I failed and am excited to find a primary that is thyroid savvy. I am angry that my primary completely dismissed my requests to up my thyroid meds! If undertreated thyroid was the problem I have spent a lot of time, worry, and money for nothing.
Trust your instincts! Good luck at your appointment!

Edit: Post your thyroid tests on the thyroid board. They are so helpful in figuring out where our "normal" ranges should be. It might be a surprise, it was for me!
TSH Before T4 replacement TSH was 5.1
After levothyroxine TSH 1.03 Free T4 .82

I would like the full thyroid panel.

But, with the help of the thyroid board I found that my Free T4 is only 8% and should be 50% - 70%! To bad that I haven't found a doctor that took everything into consideration. I would like to thank the specialist and primary for scaring me by testing for fibromyalgia, MS, nerve disorders, etc!! Each appointment and test was another 2 - 3 week wait & bill.
Chalk it up to learning, I suppose.

Last edited by Stufftie; 02-08-2013 at 08:03 AM. Reason: Add thyoid board info.

Old 02-08-2013, 09:28 AM   #4
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Join Date: Sep 2007
Location: Florida, USA
Posts: 36
Sweetie31 HB User
Unhappy Re: Headed to rheumy to diagnose me.

Thank you so much for your response. I am on synthroid .175 mcg ( switched from generic to see if my symptoms improved) and 5 mcg cytomel generic. They say my labs are in a state to suppress cancer regrowth but that I am not hypo. My endocronologist said this is good & doesn't know why I still feel badly with all my symptoms. I had a neurology evaluation for foggy brain & memory loss, had a brain mri, to show no cancer in my brain but coincidental cyst found in my brain...not large but watching it..I take magnesium, b12, iron (just started for anemia) vitamin d ( had low levels prior to starting) chromium, melatonin at night. Now...I use to take tons of ibuprofen (800mg 3times daily) and had stomached have Gerd & IBS and was told to stop any NSAIDs cuz I have an inflamed area in my stomach that was biopsied. Benign thank god but taking constant NSAIDs is not a good idea. So now, I have a referral to rheumy to figure this all out & how to treat. I feel I have been thru the ringer with tests etc. since having thyroid cancer and can't stand it anymore! Oh to feel great everyday would be awesome as I am chasing a little one now!
There has got to be a way...I feel I AM managing now, but need to know for certain fm is all this is! I fear what I have read from others? Of being tried on these meds and having strokes etc! I would rather not go there!
Ok, vent is over! Thank you so much!

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Stufftie (02-08-2013)
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