Thyroid Uptake & Scan?

[starlily88]

I have been feeling awful last 4 weeks. Awful thyroid pain, temperature, sinus problems, upper respiratory.
High fever every night, deep cough feeling that only comes out at nite, one cough I loose my breath.
Pain on swallowing so only ingest broth/tea.

I visited my Internist - said I had high fever 99.9 F. .
Went to my endocrinologist - says my thyroid is inflamed.

Ordered Thyroid Uptake Scan I 123. One takes Radioactive pill at 8 AM.
Two (2) hours later get scanned (radiation).
Return next day 8 AM, another radiation scan.
This is to see if thyroid "uptakes" any of the radioactive pill.

My Endocrinologist told me 18 years ago that I have Subacute Thyroiditis/
I see him 4/times year for last 20 years - he checks manually my thyroid on every visit.
It is always inflamed according to him, and hurts me when he manually examines it.

I took the Thyroid Uptake Scan years ago. My thyroid took none of the radioactive pill up..

Why should I take this test again?
My ENDO and me already know I have subacute thyroidism, test will only show I still have it.

Physically, and mentally I don't have the energy to be at test for 2 days straight at 8 AM.
First day is long - at least 4 hours..
Return at 8 AM next morning for another radiation scan.

I do not have ability to get to sleep or stay asleep due to my ME/CFS, and this virus has me double my normal fatigued state.
I have never been to dr at 8 AM since getting sick. I am asleep then.
To do this 2 day test - I would have to stay awake for 2 days - get even sicker, for no reason.

It still hurts a lot to swallow, I still keep getting fever - and it is now 4 weeks later.
The Endo did write me script for 12 days of steroids.

I did make appt with Endocrinologist at Johns Hopkins but can't be seen until July 2018.

I am just at the point after being sick for so long - that going to drs is a huge hassle for me - because I get so exhausted, there is no cures, there is no meds.

I have to see cardiologist 2 times/year, dentist 2 times/year (last 7 months I have been in dental chair once/week for cavities, extractions root canals, other surgeries so I am exhausted). Then I see glaucoma dr 2 times/year. Just ran to Hopkins Wilmer Eye CLinic emergency with eyes once again - there 1/2 day.
Been in hospital with asthma attack, got diagnosed with shingles, and broken big toe. That was 5 months ago. All of this is just too much for me to do another test for no reason - and they refuse to do scan in PM.

This virus, and thyoid pain is making me so weak, and unhappy.
Should I just do the steroids? Then see what Hopkins doctor says?

Thanks so much for any input you can give.
Starlily88

 

[Misfit Toy]

Don't do it. Do not take a radiation pill. Thyroiditis does not require radioactive pill. I had my thyroid out...do not do it.

 

[Wishful]

The medical screening industry has a lot of incentive to maximize the number of patients getting screened, as does the followup testing and the treatment industries. I found 'Seeking Sickness, by Alan Cassels' usefully educational. I am no longer going to accept screening or diagnostic tests--especially if they involve potential harm--without doing my own research into the issues.

I'm not suggesting avoiding necessary tests, since you have a serious disorder. It's just a good idea to know more about the issues before agreeing to a potentially harmful or expensive test.

 

[starlily88]

Don't do it. Do not take a radiation pill. Thyroiditis does not require radioactive pill. I had my thyroid out...do not do it.

Thanks so much M.Toy. I had to go to Urgent Care this AM. Shocked my temperature was at 99.9 F!
Dr. did Flu A/B swab, strep swab - both negative.
Did TSH, T3, T4 bloodwork.

If you don't mind - can you tell me why your thyroid is out? I asked for an ultrasound of thyroid - no one will say yes.
The radiation pill is so strong - one can't be near any people for 3 days!

 

[starlily88]

The medical screening industry has a lot of incentive to maximize the number of patients getting screened, as does the followup testing and the treatment industries. I found 'Seeking Sickness, by Alan Cassels' usefully educational. I am no longer going to accept screening or diagnostic tests--especially if they involve potential harm--without doing my own research into the issues.

I'm not suggesting avoiding necessary tests, since you have a serious disorder. It's just a good idea to know more about the issues before agreeing to a potentially harmful or expensive test.

Thanks Wishful. I totally agree. there seems to be no merit to this Radioactive test. Yes, when I first did it I was much younger, and it did show my thyroid did not work. well, I assume it does not work now either.
I am distressed that my Internist ignored my throat, my thyroid (said it was muscular pain), and only paid attention to my high fever.
Endo - no blood tests - just jumped on Radioactive test - said an ultrasound of thyroid would show nothing.

My cousin is MD PhD at Harvard and MIT. I texted him - but he is overseas for his job.
I only listen to him - I assume he will find this totally unnecessary, and tell me who to see.

Thanks - book sounds great - I will look at Amazon. Thanks for the support.
Starlily88

 

[Misfit Toy]

I had my thyroid out because I did have hyperthyroidism and then became hypo and had thyroiditis along with several nodules. I could not swallow and it was hot to touch. IT came back suspicious of cancer.

Once you have a radiation pill, it will destroy the thyroid. Go to a TCM doctor instead. Traditional Chinese medicine. They can calm down the thyroid.

 

[starlily88]

I had my thyroid out because I did have hyperthyroidism and then became hypo and had thyroiditis along with several nodules. I could not swallow and it was hot to touch. IT came back suspicious of cancer.
Once you have a radiation pill, it will destroy the thyroid. Go to a TCM doctor instead. Traditional Chinese medicine. They can calm down the thyroid.

Thanks M Toy. So when I had radiation pill 16 years ago - did this destroy my thyroid, because I had no symptoms?
I am going to an ENT this week who does swallowing problems, thyroid gland, voice box problems. IF finds nothing well out of options.
Starlily88

 

[Misfit Toy]

Thanks M Toy. So when I had radiation pill 16 years ago - did this destroy my thyroid, because I had no symptoms?
I am going to an ENT this week who does swallowing problems, thyroid gland, voice box problems. IF finds nothing well out of options.
Starlily88

Are you on synthroid? IF you are not on synthroid, it did not destroy your thyroid gland, but eventually too much of the radiation will destroy it.

 

[starlily88]

Are you on synthroid? IF you are not on synthroid, it did not destroy your thyroid gland, but eventually too much of the radiation will destroy it.

Thanks M.Toy. I am not on synthroid. No meds ever given to me for thyroid my whole life.

Getting any dr to run a Complete thyroid test panel seems impossible - they are all resistant. Do you know why?
Went to an Urgent Care- she only ran T4 and TSH, refused to run antibodies.
I want the TPOab antibodies, TGab antibodies (Hashimotos screen), Free T4, Free T3, T3U, etc.

I have anemia and low TSH - which tells me nothing without the panel test.
I might just pay this lab to run the tests - don't need a script but you have to pay up front.
Starlily88

 

[Misfit Toy]

I have paid for tests for thyroid online. it's worth it.

I hate endos. you need a functional medicine doctor and if you are in Baltimore, you are near some really good ones. Do not use endos.

You need a full thyroid panel, yes.

Why are they resistant? Because they suck and give the thyroid no credence.

Anemia screws with the thyroid so work on that. take liver pills for iron. That must be addressed.

 

[starlily88]

I have paid for tests for thyroid online. it's worth it.

I hate endos. you need a functional medicine doctor and if you are in Baltimore, you are near some really good ones. Do not use endos.

You need a full thyroid panel, yes.

Why are they resistant? Because they suck and give the thyroid no credence.

Anemia screws with the thyroid so work on that. take liver pills for iron. That must be addressed.

Thanks M Toy. I did see my ENT today, thorough scoping of throat, nasal passages, voice box/larynx, etc.
So happy all look good. He wants me to continue the steroids, stop the anti-biotic (not bacterial, but viral).
Then if not better, get Endoscopy with GI.

I asked him why all the resistance on full thyroid panel - he said that it is true, but that most drs can't ask for them due to what kind of dr they are. Which made me say " well, my Endo certainly can order one" I faxed my Endo a request for script for this thyroid panel - 2 days later not heard a peep.
Yes I will order it online if I have to.

I need an iron infusion - so going back to my Hematologist for that.
Going to new Internist next week - I want to ask him to run thyroid panel - but being we have never met, I am not sure how to approach this.............
Out of 4 drs - they all said different things - so realize this will be in the bucket of finding out by asking my breast cancer surgeon - he knows what everything is!