Question for anyone out there that has Hashimoto’s along with PD. My neurologist wants me to have the scan but I have not had one at all because of the dye that they use even though they could give me something to protect my thyroid I’m still very hesitant.
Additionally, he wants me to have one because my signs and symptoms are not typical PD symptoms as I only have a tremor and he’s very confused by all of it. Additionally,I have seen another doctor for a second opinion and he is saying the same thing. They both said after almost 6 1/2 years of a tremor I should be far more along in terms of other symptoms which I have not been. Mind you I am not complaining! But it has affected my Gastro system and they are leaning towards another diagnosis but they don’t want to just yet because I have not had the scan. If anyone has any feedback that would be great. Thanks.
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MissRita
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No expertise here. I did find this article about using a lugol's solution to reduce the thyroid radiation burden when getting a DAT Scan with Hashimoto's: jnm.snmjournals.org/content...
i have hashimoto and an 'untypical parkinsonism' just like you. i'd be interested to know what other diagnosis your docs considering. i had two DAT scans, no-one mentioned hashimoto as a problem for it. i have no lasting effects of the dat scan.
Well something that they are considering is something to do with my fructosamine levels. They’re very high and way out of range and can signify a diabetic type two diagnosis but we’re not there yet. Additionally something else that’s called idiopathic postprandial syndrome. That’s a type of syndrome that has all of the telltale signs of PD but and yet when you go to test for it my A-1 C is completely fine but my Fructosamine levels again are very high. Additionally my gut is always in pain first thing in the morning is if I starved myself for many many days and I wake up extremely hungry and even when I take any kind of medication for PD it makes my tremors worse. Mind you, I don’t have any other classic signs or symptoms except tremor. I work 50 to 60 hours a week, I drive my car fine, I sleep like a rock, and I have no slips trips and falls. Just a tremor. I am now in the middle of getting an appointment with a doctor at Massachusetts general because I have to get someone that’s a Neurogastroenterologist motility specialist which is very difficult to find and I think I have found someone that I’m trying to get an appointment with. Digestively anytime I eat anything or swallow anything or anything that requires my digestive track to move that’s when I start to tremor. Both of my neurologists in Syracuse and Rochester have all said that basically the same thing that after six years I should be much more further along in terms of signs and symptoms and I’m not and that’s why they are reconsidering the diagnosis. Very frustrating!
I know this is an old post but I will reply anyway.
Have you checked your cervical spine?
I have a brain stem and spinal cord injury. It affects my swallowing, peristalsis, arms, and the compression caused tremor. These symptoms could all be coming from your cervical spine. You May want to get checked for Chiari malformation and/or any other thing affecting your cervical spine. Consulting with a good cervical cranial Neurosurgeon could rule this out . There is a specialized CT scan with rotation that can be looked at to see if Skull To C2 is the cause. The majority of neurosurgeons do not know about this problem or Scan to diagnose, so you must go to one of the few neurosurgeon’s who specialize in these types of problems. Fraser Henderson in Maryland is top notch.
Dear MissRita,I have recently had the DATscan and I’m being weaned off of the Carbidopa levodopa. I know that I have noticed a lessening of my
old symptoms. I’ve always (last 4yrs from Parkinson’s diagnosis) had symptoms of Parkinson’s.
I am being weaned very slowly off the C/L and have stopped the nighttime dosage altogether of CR.
My neurologist mentioned Parkinsonism. The first results will be in on 12/3/21 when I meet with my cardiologist. I Don’t know the difference between Parkinson’s disease and Parkinsonism.
I have unilateral tremor which started in 2018 but hasn't got much worse. I have some slowness and one or two minor abnormalities but a DAT scan at the time was normal. I had no ill effects from the scan. The tremor didn't respond to any meds no matter how high a dose or loathsome the side effects. Last week I had a second DATscan in an attempt to get a PD diagnosis to qualify for DBS which is more risky than being irradiated. Good luck!
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