[Alexmcdonald]

#1060290

I would like to know if anyone has heard of this happening, and if so, why so that way I can tell my doctors. They have no idea what is going on so I am trying to find someone else who has had this problem.

My blood work is all over the place, hyper, hypo, sometimes t3 will be hypo while t4 is hyper!!! Regardless, both times i have had the RAI uptake scan, my uptake was incredibly high. My uptake last was 58.5% when normal is 7-22%. Note: The same day I had my tsh,t3, and t4 in normal range. Despite this i have extreme hyper symptoms such as sinus tachycardia reaching 200 beats per minute, heat intolerance, ostioperosis, along with weight loss (I am 22 at 82 pounds),very swollen thyroid and have recently found out i have a kind of sudden arrhythmia death syndrom called long QT.

My question along with all of my doctors question is, what can cause RAI uptake to be so high while bloodwork being within normal range?? I really need a direction to point my doctor in because I’ve already have had 2 say they don’t know and refer me elsewhere and I have now run out of money and can’t just go to a million doctors who also don’t know and never heard of it!

If anyone has had this happen, please let me know. I am so sick.

[Kimberly]

#1181789

Hello and welcome – I don’t think I’ve run across this issue, but hopefully, you will get some additional responses here. In the meantime, here is a link from University of California San Francisco regarding the uptake test; it mentions a few drugs and other issues that can interfere with results.

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.ucsfhealth.org/tests/003689.html

I wish I had a better solution for you rather than suggesting a third (or fourth or fifth) opinion, as this is clearly affecting your quality of life – and you deserve to get some answers.

[Alexmcdonald]

#1181790

Unfortunately I am not on any of those medications. Actually, I am on medications that makes my uptake readings LOWER. I am on an antihistimine which is also a central nervous system depressant in attempts to lower my heart rate. This was recognized on my RAI scan which says that my uptake is actually higher then 58.5 due to the antihistamine! It’s all crazy. If you were me, who would you contact in hopes of answers?

[christinevilla]

#1181791

Hi Alexmcdonald, I am acutally going through the same thing as you; normal labs with a high uptake and scan. My story is long, I will try to shorten it as best I can. I had a baby in January of 2012, looking back my symptoms started about a week before he was born. After losing 57 pounds in 4 months, experiencing crazy bouts of diarrhea, increased heart rate, heat intolerance and the inability to care for my newborn and 3 year old I was diagnosed with graves disease and hashimotos. My endo left her practice this past June and I got a copy of my records to take to the new endo in October. My graves antibodies were negative, she stated so in my records, why she gave the diagnosis . . . I don’t know. My uptake was also low; 4% at 4 hours and 12% at 24. I took this info to my PCP and he said stop all PTU, there is no reason for you to be on it. At that time I had gained almost 15 pounds since April and my labs were reading hypo. Fast forward to Halloween, my appointment with my new endo. He also doesn’t think I have graves’, but he does believe I have hashimoto’s due to a high TPO-73. He told me to stop taking my propranolol which at the time was 10mg in the morning and 10mg before bed. My hyper symptoms started again around the 13th of November. I called and he kidn of wrote me off, so not happy with him. So he ordered another RAUI scan last week and this is the report:

The obtained planar images show homogeneous diffuse activity throughout the thyroid gland with no discrete hot or cold nodules identified. No pyramidal lobe uptake is seen.

Thyroid update values are 45.9% and 65.5% at 6 and 24 hours respectively, after administration of 317 microcuries of 1-123 administered via oral capsule. Normal percent uptake ranges for these time periods are 5-15% adn 15-40% respectively.

Impression:
1. Homogeneous activity throughout the thyroid gland with no discrete hot or cold nodule.
2. Elevated thyroid uptake valuse as described above.

The labs I had drawn on 12/3/2013, he did not order a FT3:
TSH – 1.24 (.35-4.01)
FT4 – .98 (.61-1.37)

I have been feeling better since I started taking my propranolol again, 20mg in the morning, 10mg mid afternoon and 10mg at bedtime. Wondering if maybe the FT3 was creeping up and causing the symptoms and now the propranolol is taking them back down again. So confused, I have an appointment with a third endo on January 3 for another opinion, hope I get some concrete answers soon. I am also wearing a 30 day heart monitor to see if there is another cause for the palpitations and increased heart rate. I believe it is thyroid related, but my endo doesn’t seem to think so. Thankful I have that appointment for a third opinion.

I hope you find some answers, and I pray that you are feeling better soon. If I find out the cause of this I will be sure to post and let you know. I would definitely look into getting a 3rd opinion, I know you said you are running out of money but maybe there is a doctor out there who will accept you as a patient and accept monthly payments for your visits.

Blessings

[Kimberly]

#1181792

@Christinevilla – Thanks for sharing your story!

@Alexmcdonald – This is a tough situation, but perhaps a practice affiliated with a university or with a local hospital would be a good next step, as they might have better access to cutting-edge information. Totally understand about $$ being an issue, but as Christinevilla noted, there are doctors out there who will accept payment plans (although it can unfortunately take a lot of patience and persistence to find the right one).

[snelsen]

#1181793

HI ALEX
It is not clear to me what treatment you have had for Graves’.
I’d like to leave the uptake results for a minute, and ask other questions, make a few comments. And, of course, I am not a professional, just another Graves’ patient. But we all do learn some things along the way, and it is good to share and think together.
Questions
1. When diagnosed, and how were you initially treated? Did you have antithyroid drugs )probably methimazole?) Were you going to an endocrinologist? What was the plan? Did you have blood work done while on ATD if you were? And, after the first step of treatment, the ATD, #2 addresses the subsequent choices.

2. Did you stay on ATDs or have RAI or thyroidectomy? What is the reason for the follow up of the RAI uptakes? What has been your treatment?

3. With the cardiac symptoms you have, I do really think you should be seeing a cardiologist, 200 BPM is dangerous. But it is not a bit typical to take antihistamines for a cardiac condition. The long QT may be related to untreated hyperthyroidism.

4. All your symptoms suggest hyperthyroidism, untreated, to me. What drugs are you taking?

5. I am not sure why they continue to do RAI uptakes. THat is not a treatment at all, just a diagnostic tool. Much better to treat YOU with the three Graves’ choices. I would want you and any doc to focus on your symptoms, and get you in a safer place than you are now, doing the appropriate labs along with ATD’s (thyroid labs, liver function and white blood cell count.

6 You are definitely sick now. If you went to any ER with a heart rate of 200, they would not treat you with an antihistamine. Everything about your health screams untreated Graves’.
I appreciate your dilemma with money. Always a problem. Do you have any insurance at all? Will it change in January? Are you exploring the Affordable Health care act not that it is working better? I am sure that some of what I wrote is the result of not knowing your Graves’ history at all, so look forward to hearing it. And..if your heart rate stays at that high rate, get to an ER, I’d think.
Shirley

[ChristinaDe]

#1181794

Hi Alex ~ I can definitely see why you’re posting this question & can imagine how sick (& frustrated) you feel. Like Shirley, I’m a little confused as to whether you’ve begun any treatment yet. ATDs? Beta blockers for the heart rate? I’m sure we’ll hear more from you on that…

The one thing I thought I’d mention now pertains to the “normal” labs w/ abnormal uptake on your scans – coupled w/ severe hyperthyroid symptoms. I have heard of this sort of thing (kind of) – in my own case. When I was diagnosed, my T3 & T4 were normal & my TSH was mildly hyper (which my primary referred to as normal since it wasn’t very far out of range & left untreated for about 5 years). After years of symptoms & cardiac workups & most every other workup you can think of, I finally self-referred myself to an endocrinologist. She said that in light of my symptoms (very similar to what you’re describing), even a slight deviation in TSH becomes significant & cannot be considered normal. Apparently this is newer thinking for some docs. Anyway, what I had is called subclinical hyperthyroidism. Many, if not most, with this condition don’t have symptoms so they’re simply watched. However, if the symptoms are severe then they usually begin additional testing & treatment. In my case that was the uptake scan like you had. Mine was 65% (w/ normal T3 & T4). They also did an ultrasound of my thyroid which confirmed that it was enlarged & also had nodules. Other labs were done (thyroid antibody tests, Vit D, etc.). Because of the severity of symptoms, because of the thyroid scan, because the TSH was mildly low…treatment began. I was started on antithyroid meds to help w/ many of the thyroid symptoms & beta blockers for the heart rate. Mine tended to run fast at rest & shoot up to 180 or so w/ exertion or stress. Awful! Beta blockers really helped w/ my heart rate issues.

Not sure if any of that helps or not. A final note…I agree 100% w/ Shirley regarding the seriousness of an undiagnosed/untreated heart rate of 200 bpm. Please be very careful about exerting yourself physically, stressing out mentally, and of stimulants such as coffee until you get this under control!

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