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Thyrogen injections vs going hypo

amorriso
Posts: 186
Joined: Oct 2010

I need help! I'm scheduled to have my second round of RAI treatment in March. My doctor wants me to go off my meds next week. I had my first round in November and only then started on thyroxine. I'm just feeling normal again and am dreading the thought of having to go hypo again. I'm also afraid I won't be able to keep working...

I asked about the thyrogen injections, but everyone here (here being Muscat, Oman and also Dubai) seem against using this option.

I dont really have a doctor - its been a bit tricky figuring out what to do.

What do people recomment? Is using the thyrogen just as effective? And what hospitals agree to use this option. I'm about ready to travel anywhere to get this done.

All suggestions and advice desperately needed!

Thanks

sunnyaz
Posts: 582
Joined: Oct 2010

Hi amorriso,

My second Endocrinologist/Surgeon/Oncologist and Nuclear Medicine doctor weren't going to let me do the Thyrogen either and I pushed the subject. I explained that I am not in a position to take five or six weeks off of work to go Hypo and do the treatment. It's barbaric in this day and age with the discovery of Thyrogen. I have spoken with all three of my very smart and highly educated doctors that allowed me to do the thyrogen injections after pushing the issue. After seeing my #1 Endocrinologist, all three of my doctors finally concurred that there is no proof that Thyrogen is less effective than going hypo. I took it for my first scan and then again for my first treatment, now again for my second treatment. I took up the iodine just fine without going Hypo and without any issue.

First, get an American Endocrinologist or an Oncologist that will help you. Is there any way you can get to the states? You can go to Mayo Clinic possibly. I don't know what your financial situation is but maybe you can come here to Tucson, Arizona for treatment. I know that my doctors would take you on. I am with the University of Arizona Cancer Center and University Medical Center (where Gabby Giffords was taken after the shooting). My Endocrinologist works for the same company I work for and that is Arizona Community Physicians at Western Endocrinology. He got me in with the UMC Oncologist/Surgeon/Endocrinologist that has pretty much saved my life. I love them all including my new Nuclear Medicine doctor whom I just met this week. They are truly amazing, caring and wonderful human beings and Physicians that actually communicate with each other by personal cell phone. They know each other as well and refer to each other by first name. They treat me like a human being, not just a subject/patient. This is a very tight knit Medical community and they look out for your best interest like you are their only patient.

I will be happy to help in any way if you decide to come here. I feel your pain, it's like nobody is going to bat for you. You need people on your side. Let me know if there is anything I can do to help you.

God's Blessings,
Julie

amorriso
Posts: 186
Joined: Oct 2010

At the moment there is no way I can get to the states. I've been searching for somewhere in Europe. I doubt my insurance will cover me. I am simply going to fight to get the Thyrogen, or delay any further treatment until I'm able to find somewhere to go.

Its just so frustrating knowing options exist but being unable to convince anyone to try to use them. The hospitals I have to go to are supposed to be teaching ones - time to get them to update their treatment protocols I think. Maybe they can use me as a test case.

I will keep the names of your Cancer centers in mind, and the Mayo clinic - sometimes they set up extension clinics overseas - I may luck out. I've gotten pretty good at researching things I need to know. I could probably teach Pre Med by now!

Thanks for everything.

Thank god for this forum!

I'll let you know what transpires in the next few weeks.

Survivor73
Posts: 135
Joined: Oct 2009

Hi There. Just so you know, the reason they may be suggesting not to use thyrogen is that there is currenlty a shortage of it. I live in Canada - my dr is in Toronto & I now need another test to see if I have any natural thyroid cells left. Had total thyroidectomy in 09 and now show a nodule & cystic lymph nodes, so it's likely back...
Anyway, the Dr said to put me on the high priority list as there is a shortage of the drug in Canada - don't know if this is affecting you or not.

Best of luck.

I have never heard that going hypo is necessary...I know the drug is expensive, luckily I'm covered for it...I think it's crazy to add that to what you have to go through.

Take care.

sunnyaz
Posts: 582
Joined: Oct 2010

I had heard that there was a shortage also, but I didn't have any problem getting it here in Tucson. The University of Arizona Cancer Center may be able to tell them where to get it from. They didn't have a problem finding it for me.
Julie

nasher
Posts: 507
Joined: Apr 2010

yes my doc told me there was a shortage as well.. he also told me that they should be "back in stock" april/may time frame

remember shortage dosn't mean there are non out there so yes you can still get it its just that docs are pushing for the hypo method more right now (not to mention its cheeper for them if your hypo instead of shots)

good luck
Craig

diane2h81's picture
diane2h81
Posts: 41
Joined: May 2010

I met with my dr today and she suggested to push my whole body scan from July to as soon as possible. She started to push for the hypo for the scan just in case she found need for a treatment dose. I pushed for thyrogen, presented a different plan, and she agreed. So as soon as they get the shots in the office I'm in for a scan. And then if the scan presents reason for a treatment dose of i131 I may go hypo. One battle won for me! :) I have two half marathons to run within the next month and half, I don't want to go unnecessarily hypo if I don't have to.

skcalkins
Posts: 39
Joined: May 2010

If I could I would so get the shot! My insurance won't cover it so this is my second time having to go hypo. I wasn't working at the time they found the cancer in May of 2010 and luckly my husband makes enough to pay our bills just not on all the medical bills that are racking up. I feel you pain if you have to go hypo I am currently waiting on the results of my bodyscan that was done on Wednesday, my doc doesn't want me to go back on my meds till they know whether we are doing surgery again or dosing. Right the muscle pain is ruling over everything I'd be sleeping right now if it didn't hurt so much. Hope it goes better for you. I'll keep you in my prayers.

Shawna Calkins

amorriso
Posts: 186
Joined: Oct 2010

Thanks for the help everyone. I was able to sort things out over here and the doctor will let me do the shots. It's mainly a money issue with getting them - my insurance might go good for it , if not my school will pay - its easier than having to have me on leave and hiring a sub!

Will let you all know how things go.

Andree

LBlackman
Posts: 113
Joined: Mar 2011

My endocrinologist in South Carolina is planning a week long series of thyrogen injections and bloodwork then the scan on Friday. One nurse told me I did NOT have to stop my synthroid for this, and the other one told me that I did. They have me so confused. I am glad there are other like you all to talk to about this, I feel so alone with this type of cancer. Thyroid cancer is very prevelant, but I haven't ever met or talked with anyone else who has Hurthle cell.

sfl67
Posts: 55
Joined: Nov 2009

Hi LBlackman,

I also have Hurthle Cell and had the week long tests in September 2010; this was my one year follow-up after my surgery, radioiodine and full body scan. I did the low iodine diet two weeks before the week of testing and stopped my Synthroid on Sunday before my first Thyrogen injection on Monday, the week of testing, and resumed on Friday after my labs were drawn. I also had to do the low iodine diet the week of tests.

Wishing you well,
Shelia

LBlackman
Posts: 113
Joined: Mar 2011

Hi Shelia,
I get so confused and obviously the nurses do to at my Dr. office. My cousin had to do a low iodine diet as well. I am going to call my endocrinologist again today and ask about a low iodine diet. Thank you for resoponding and I wish you the best of luck with your treatment.
Lynne

nasher
Posts: 507
Joined: Apr 2010

from what i have been told the reason for the shots is so you do not need to stop takeing synthroid.. but you still should be on the low iodine diet.

definatly call and talk to your endocrinologist

good luck

Craig

LBlackman
Posts: 113
Joined: Mar 2011

I just hung up with my endocrinologist and she confirmed that I do not need a low iodine diet prior to my scan and I do need to stop the synthroid and stay off of it for a week during the injections and the scan. I have only been seeing an endocrinologist, should I be seeing an oncologist as well? My endocrinologist seems to think my weight gain, panic attacks, lethargic moments and brain fog are due to stress, but it's funny I didn't have these problems before having my thyroid removed.

diane2h81's picture
diane2h81
Posts: 41
Joined: May 2010

My endocrinologist office told me the same about no need for the low iodine diet and that I should continue on my synthroid. I go in for my thyrogen injections and scan sometime this month, as soon as the thyrogen arrives at the dr office.
I'm not sure about the other (weight gain, panic attacks, lethargic moments). Doctors like to place the blame on a lot of things on stress. And maybe it is playing a small factor in it. I also think that not having a thyroid plays a bigger factor. I think someone else mentioned checking the dosage on synthroid.
Hope all is goes well with the thyrogen and scan. Keep us updated.

nasher
Posts: 507
Joined: Apr 2010

Well my (weight gain, panic attacks, lethargic moments) are caused by my thyroid going bad and continued after removal..

I am sure stress plays a part in all of this after all you cant tell me the C word dosn't cause stress.

if your cancer has not spread you probaly dont need an oncologyst... if you have questions about if you may need one or not talk to your endochrinologist and see what they say about it.

there are lots of reasons people get (weight gain, panic attacks, lethargic moments) and stress is an easy one to target as one of the MANY causes cause everyone has stress of one type or another

good luck

please keep us updated

sunnyaz
Posts: 582
Joined: Oct 2010

Nasher is right, however maybe Hurthle cell is different. I took Thyrogen so that I didn't have to stop medications and go hypo. EVERONE must do the LID. This is to starve your thyroid cells of iodine so that they will absorb the RAI.
Julie-SunnyAZ

sfl67
Posts: 55
Joined: Nov 2009

Hi Lynne,

I have the same symptoms as you except for panic attacks. You are dealing with a great deal and stress has to be a part of it, but not all I think. I no longer work and I don't think I could work an eight hour day if I had to, my energy level is too low. When I sit for more than ten minutes, I fall asleep.

I wish you well with your upcoming tests. You will be in my thoughts. Please let us know how everything goes.

Thank you for your good wishes,
Shelia

LBlackman
Posts: 113
Joined: Mar 2011

Thank you so much. I am going to do the LID diet as I really don't think my Dr. is as knowledgeable about it as everyone I have known has had to do the diet the week prior to scans. It has been six years, but I am still very nervous about the scan. What if they didn't show anything because I wasn't doing the LID diet? I will look on the internet to be sure I am doing the right diet. Thank you for the well wishes and the response. It's so lonely at times dealing with this.
Lynne

sfl67
Posts: 55
Joined: Nov 2009

Hi Lynne,

In case you don't know, thyca.org has a printable low iodine diet that was very helpful when I did this last fall.

I wish you the best with all you have going on; you will continue to be in my thoughts.
Shelia

Diana1227
Posts: 1
Joined: Mar 2011

I also wanted to get the throgen injections instead of go hypo and I had to literally beg my insurance to cover it and apparently they do if you push hard enough. Mine covers 90% which as you might know is $900/injection yeah! I told the nurse at my endo office to expect a call for them to receive the injections in a couple of weeks and told her that most insurance companies will cover the shots or in the least a % of it. I can afford the copay but most people cannot so she suggests anyone that has insurance and they have a copay which they cannot afford that there is a website that may be able to help - www.panfoundation.org if you qualify they will cover your copay. Hope this helps! :) and is not too late for you to try it.
If not pass it on -

skcalkins
Posts: 39
Joined: May 2010

Thanks for the info Diana! It won't help me at this time because my insurance has a pre-existing condition clause and won't pay for anything to do with my Thyroid cancer till my year with them is up which will be August but even they don't pay much so it may come in handy then:)

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