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Is withdrawal from thyroid pills more effective than thyrogen when treating papillary cancer ?

Posts: 145
Joined: Aug 2011

I read on some website that stopping thyroids meds then getting radio-active iodine is better than staying on thyroid pills and getting a thyrogen shot or two. The reasoning was that your own tsh is higher and higher longer when you withdraw.

Anyone know if this is true ?

Posts: 507
Joined: Apr 2010

I have done both ways

both times my TSH was over 100 (they want it at least 30 for testing)

so I do not see eithor way being better than the other for that reason

right now with the shortage of thyrogen though it is probaly quicker treatment if you go the off meds hypo-hell route but honestly if posible after doing both ways I would recomend shots cause "HYPO HELL" sucks

-- From Drugs.com--- http://www.drugs.com/pro/thyrogen.html
Even when Thyrogen-stimulated Tg testing is performed in combination with radioiodine imaging, there remains a meaningful risk of missing a diagnosis of thyroid cancer or of underestimating the extent of disease. Therefore, thyroid hormone withdrawal Tg testing with radioiodine imaging remains the standard diagnostic modality to assess the presence, location and extent of thyroid cancer.
Although Thyrogen appeared noninferior to thyroid hormone withholding in a study of postsurgical thyroid remnant ablation, long-term clinical outcome data are limited. Due to the relatively small clinical experience with Thyrogen in remnant ablation, it is not possible to conclude whether long-term thyroid cancer outcomes would be equivalent after use of Thyrogen or use of thyroid hormone withholding for TSH elevation prior to remnant ablation.
thyrogen has been avalible since 11/30/1998 before that point the only way to check was the Hypo-hell withrdraw way. to be honest there is not enough data for them to determine if thyrogen or Thyroid withdrawl is the best path.

"Somewhere I read that not everyone gets all those symptoms. So has anyone ever tolerated being off thyroid for two weeks and still felt pretty good ?"

no not everyone gets every symptom of that when i went through my RAI treatment i was off my meds for two+ weeks so with a little cut and paste i will list what symptoms I remember haveing

Poor muscle tone )really hard to say for those 2 weeks i didnt have energy to work out)
Fatigue (DEFINATLY i would call it more of exhaustion)
Elevated serum cholesterol (didnt get a test for this till right after RAI and it was higher)
Cold intolerance, increased sensitivity to cold (did this in may and definatly noticed cold)
Constipation (minot nothing major)
Depression (DEFINATLY)
Muscle cramps and joint pain (hard to say here I have had issues with cramps and joint pain for years)
Coarse hair (dont have much didnt notice)
Paleness (dont do much time in sun so dont know)
Decreased sweating (pretty sure not positive)
Dry, itchy skin (definatly
Weight gain and water retention (yes i had water retention and weight gain)

Impaired memory (definatly)
Impaired cognitive function (brain fog) and inattentiveness (definatly)
Sluggish reflexes (definatly)
Increased need for sleep (definatly)
Irritability and mood instability (&@*%(@% Definatly)
--- I deleted the ones that were no's---

Posts: 582
Joined: Oct 2010

I had the thyrogen both times. Both Nuclear Medicine doctors said that there was no difference. They say "the jury is still out on it" but I prefer thyrogen. I really don't want to experience Hypo hell.

Posts: 507
Joined: Apr 2010

You helped me learn a lot julie... a lot of other people who are no longer posting also taught me a lot

basically if you can get thyrogen go that route... in most cases if you have to wait a few months it is still probably a good idea to wait.

if thyrogen is not available or your insurance wont cover it you may be stuck doing hypo-hell.

either way the best way to get the best uptake is to follow the Low Iodine Diet. You need to deplete your iodine down as low as possible so more of the dose will be absorbed.

Some people in the past have gotten thyrogen or gone hypo-hell and NOT stuck to the LID... then years later when they learn of why the LID is important... you see them incredibly nervous about there next scan and if the cancer had come back before but was not detected because of there diet.

Posts: 145
Joined: Aug 2011

Does going hypo-Hell always raise a person's TSH equal to or higher than thyrogen ? Nasher--- did you have symptoms from the thyrogen or the radio iodine ?

Posts: 507
Joined: Apr 2010

all of those symptoms were hypo-hell

both thyrogen and hypo-hell route got me over 100 TSH

if you do good on the LID hypo-hell will defiantly raise you as high or higher... but if you have enough thyroid tissue left and you don't do the LID your TSH will not go up as much.

the only good thing i can say about hypo-hell for the first round after surgery... the docs will know if you stuck to the LID or not.

Posts: 47
Joined: Aug 2009

Hi, I chose meds withdrawl before my endo said he prefers the 'natural way'. Plus, I'm deathly afraid of shots. I'll do the meds withdrawl again.

I was off of my meds for 3 weeks (this was for my year after test). I was fortunate that I didn't have to undergo the WBS. I had an ultrasound in Oct. '10. Most everyone was amazed how well I was while off the medication. I was able to participate in a 2 mile walk for the Kidney foundation, drive myself to work and exercise. And of course, I had an extra hectic work schedule at the time.

Yes, I did feel more tired than usual, got the itchy dry skin and retained a lot of water. During the first two weeks that I went back on my meds, hypo hell was raised. I did manage to make an unplanned trip to NY and did pretty well (it was there I saw how bloated I became).

My downside, it took 6 months for my body to re-adjust to its post cancer/TT normal and then battle an insane salivary gland infection. Learned the hard way 18 months after the RAI, that after eating sour and or spicy foods, water intake should be increased exponentially because my salivary glands were nuked.

Upside, I'm cancer free and happy to be alive.

Posts: 9
Joined: Jan 2011

Acording to what my doctors have said, and what I have read, Hypo-hell is preferred with the more agressive variants (tall cell, spreading etc). It is not only the high TSH that matters. When you go hypo, all body functions slow down, and the uptake time for the RAI will be longer and better. When taking the shots, the body functions are still normal, and the RAI is secreated more quickly.

I dont know if this is true or not. but when I conpare my isolation time in the hospital whith others, this seem to make sense. I was hypo and had to stay isolated for two days, but others with Thyrogen only stayed one night before the gamme radiation was below the isolation limit. This in spite of me drinking a lot of water to get the RAI out quickly.

TT and RAI in 2010

Posts: 186
Joined: Oct 2010

When I used the shots, I was still kept in isolation for 3 days. They let me out only because I lived alone and could keep well away from anyone. When I went for my scan my levels were still fairly high. It was a week before they gave me the ok to be near people.

My first round of RAI was without shots (ie - natural), I was out in 2 days.

So I dont know if it shots or natural affect how the RAI leaves the body. I'll still do shots if i can get it!


alapah's picture
Posts: 287
Joined: Oct 2009

interesting take on the idea of going off levothyroxine vs using thyrogen for patients with aggressive variants. my papillary thyca is considered aggressive and it is for that very reason that my docs did not want me to go off levo. they tell me that when you are off meds and hypo for that long it give the cancer a much better chance to grow - my understanding being that the cells are more active due to the lack of suppression one gets on levo. my 100 mci of RAI was done off meds but subsequent tracer doses were given on thyrogen. i seem to be RAI resistant now so it's no longer an option.

Posts: 582
Joined: Oct 2010

This is the same reason my doc's gave me thyrogen. When I asked about which was better, the answer was, that there was no difference ("jury is still out on that opinion") except that for people with more aggressive cancer or the B-RAF mutation gene, taking the thyrogen was better because of the limit of time for the cancer to take hold again. I am like alapah now, won't do anything for me now. The more RAI you have the less likely it will help when you really need it.

Posts: 145
Joined: Aug 2011

A doc told me that there's evidence that thyrogen is better because prolonged TSH levels of withdrawal actually allows the rai to come back out of the cells. The work was done in ?Germany. Anyone know about this ?

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