CSN Login
Members Online: 6

Normal to not have hormone therapy after TT?

iggymurphy
Posts: 34
Joined: Sep 2011

This is all moving so fast. Saw an Endo for the first time two weeks ago, ultra sound that day, biopsy two days later, pre-surgery consult yesterday and surgery scheduled for Oct. 5th. They are going to do a total thyroidectomy. My question is....is it normal to not see an Endo until a month after surgery? What about hormone replacement? They are scheduling the RAI for 6 weeks after surgery. It seems like if they take out the thyroid they should be putting me on replacement med's?

Has anyone else had a TT and no med's immediately after? What should I expect?

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

My surgeon was the first to prescribe me Synthroid/Levothyroxine but he also was consulting with my endocrinologist. Initially, I was not given hormone replacements (cytomel or synthroid) between the TT surgery and the RAI date but I think it was not six weeks - more like 2 weeks maybe? I can't recall exactly as it's been a while.

However, in the end I had to go on Synthroid because they'd failed to note that I had been given a CT with iodine contrast just prior to my diagnosis and surgery. When I pointed that out they consulted with a radiologist and determined I had to wait three months for all of that iodine to clear my system until they could give me the RAI. You can't be off meds for three months so I went on Synthroid for a while there before going off it in the weeks leading up to RAI. Sorry, that sounds confusing, huh?

I am not an expert by any means, but I would think six weeks is too long to be without something- either a T3 (Cytomel) or T4 (Synthroid/Levothyroxine) med. T4 lingers in your system longer than T3 which also means that it takes longer for your body to get rid of it. Hence, T3 drugs are sometimes given in those inbetween periods as they dissipate faster. You're going to need an endo anyway so if it is at all possible to consult with one now, I'd recommend that.

sfl67
Posts: 55
Joined: Nov 2009

iggymurphy,

I had a total thyroidectomy (Hurthle Cell Carcinoma) July 20, 2009 followed by RAI Sept. 2 and whole body scan Sept. 17, 2009. I wasn't given replacement therapy until the day after my scan.

Wishing you well with your surgery and recovery.

amorriso
Posts: 186
Joined: Oct 2010

I had my TT last september and did not start on hormone replacement until after my RAI in November. It was partly my decision because I figured why go on it for a few weeks only to have to withdraw again.

Cant remember when I first saw my Endo - I think he dropped by after my surgery, then I had an appointment about 2 weeks later.

I was pretty tired and slow by the time I got my RAI - it also was delayed for about 2 weeks because the isolation room wasnt free.

Make sure you have all your appointments set and the RAI is scheduled within about 6 weeks of your surgery.

Good luck

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

sounds like 6 wks or more is standard. how quickly i forget! (well, it was in 2009) i guess i've had too many things happening since then.

MarinMark
Posts: 139
Joined: Aug 2011

Why wait six weeks ? Why not sooner ?

iggymurphy
Posts: 34
Joined: Sep 2011

I asked them why, and they said "that is the standard waiting period to ensure healing" and two sentences later said I should be healed and ready for work 1 week after surgery. Lol. I primarily asked for insurance purposes. I would get paid short-term disability if it was within 2 weeks of me going back to work....as it stands it will have to be leave without pay.

I plan on calling to see if I can set it up sooner. I don't want to be on the LID over thanksgiving. :)

sunnyaz
Posts: 582
Joined: Oct 2010

I went on Cytomel the day after my TT. This is standard if they plan to do RAI within 4-6 weeks after your TT. I am not sure what the heck they are thinking. Recovery time is at least two weeks. It takes that long just for the anesthesia to wear off.

Best of luck,
Julie-SunnyAZ

MarinMark
Posts: 139
Joined: Aug 2011

I heard the main reason is to measure the thyroglobulin. Why would RAI delay any healing ? Doesn't make sense if RAI goes into only or mostly thyroid and much less into salivary gland tissue.

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

The time period one is off of hormone meds after TT and before RAI is not related to thyroglobulin. The reason patients are without hormone meds is because it takes about six weeks for thyroid hormone to build up in your system - which also means it takes about the same time for it to be depleted from your system. By being off hormone, the body ends up producing high amounts of TSH which in turn helps to stimulate the remaining thyroid cells in your body to absorb the radioactive iodine. There is a good explanation here: http://www.endocrineweb.com/conditions/thyroid-cancer/radioactive-iodine-papillary-thyroid-cancer

CLRRN's picture
CLRRN
Posts: 126
Joined: Jun 2010

I saw my ENDO 3 weeks after my 2nd surgery (1st surgery was 8/16 and 2nd 8/23 for follicular carcinoma). I spoke to her on the phone after the first surgery and she started me on Cytomel after the 2nd surgery.

I stopped Cytomel on Friday in preparation for RAI on 10/13. I know everyone is different as are doctors but you may ask about Cytomel. The ENDO won't start synthyroid because it takes a while to get out of your body after you start and unless your doctor has Thyrogen, you will need to be off your meds before RAI. Cytomel is shorter acting.

It's worth a call to your ENDO and ask about Cytomel.

Hang in there!!

nasher
Posts: 507
Joined: Apr 2010

yes ask your doctor about cytomel....

it will make you only have to be off the thyroid hormones for 2 weeks (while on LID) instead of 6 weeks...

MarinMark
Posts: 139
Joined: Aug 2011

I heard that one doesn't feel as well on Cytomel as they do on Synthroid

veronica57
Posts: 98
Joined: May 2010

I was put on hormone replacement while I was still in the hospital;the next day to be exact. I started out on cytomel. But they eventualy changed me to synthroid. I didn't get my RAI until four months later, which was not normal I was told. I had a mestastasis to my lungs and lymph glands. Even though they removed my thyroid and lymph glands in my neck, I'm just recently finding out from my PCP that the metstastasis went the lymph gland in my entire body. The onco and endo are so evasive and are not always honest with you. Now, my onco has totally given up on me. I also saw a new onco some weeks ago, and he's telling me also that there's nothing else to be done for me. But I'm not accepting that. I'm going back to my surgeon in October. I'm also going to see if my medical insurance will pay for transportation to a physician outside of my area.

Be persistant. Don't let them tell you that you can live with this stuff for years with no problem. That's what they kept telling me. But I enventually had a thoracic surgueon confirm the fact that thyroid cancer was still growing in my lungs.

Best of luck to you.

Veronica

iggymurphy
Posts: 34
Joined: Sep 2011

Had my TT early....last Wednesday and they did put me on cytomel. Thanks for the advise. They took out three lymphnoids...all came back as cancerous. What tests did they perform to find out that it has spread to lungs? Have you had any luck with a second opinion? Sitting here scared and wide awake.

MarinMark
Posts: 139
Joined: Aug 2011

Iggy:

What was the name of your tumor ? And when you had your TT did they take out lymph nodes which had tumor ? Were the nodes in the front of your neck below your thyroid, or were they on the sides of your neck ?

iggymurphy
Posts: 34
Joined: Sep 2011

They took out three lymph nodes that appeared normal on the ultrasound before surgery and appeared normal during surgery (surgeon stated right after surgery). They took them out because of the close proximity to the thyroid.

Fortunately and unfortunately the hospital I go to posts everything on-line so I found out the results before the surgeons office opens on Monday. The test results are below.

Final Pathologic Diagnosis:
A: Thyroid, total thyroidectomy:
- Papillary thyroid carcinoma (PTC), involving the right lobe, with
conventional features
- 1.2 cm in greatest dimension, well-circumscribed
- Angiolymphatic invasion is identified
- Tumor extends to cauterized deep margin (see slide A16), additional
margins negative for tumor
- Please see tumor synopsis

B: Paratracheal lymph node, right, biopsy:
- Metastatic papillary thyroid carcinoma involving one lymph node
(1/1)

C: Pretracheal lymph node, dissection:
- Metastatic papillary thyroid carcinoma involving two lymph nodes
(2/2)
Tumor Focality: Unifocal
Dominant Tumor
Tumor Laterality: Right lobe
Tumor Size: Greatest dimension: 1.2cm
Histologic Type: Papillary carcinoma
Variant: Classical (usual)
Architecture: Classical (papillary)
Cytomorphology: Classical
Histologic Grade: G1
Margins: Positive for carcinoma
Site(s) of involvement: Deep, black inked margin with cauterized tumor
(slide A16)
Tumor Capsule: None
Tumor Capsular Invasion: Cannot be assessed
Angiolymphatic Invasion: Present
Extent: Focal (less than 4 vessels)
Perineural Invasion: Absent
Extrathyroidal Extension: Not identified
AJCC Stage (7th Edition) (pTNM)
Primary Tumor (pT): pT1
Regional Lymph Nodes (pN): pN1a
Number of regional lymph nodes involved: 3
Number of regional lymph nodes examined: 3
Lymph Node, Extranodal Extension: Not identified
Distant Metastasis (pM): Not applicable

brahmamama
Posts: 4
Joined: Oct 2011

My TT was 3/29/11, RAI 5/20/11 and my WHI 5/27/11. My Endo had not given me an RX for the synthroid. I took what I had before the surgery on 5/28/11 which was too low. Then my PCP doubled it overnight. NIGHTMARE! Make sure the ENDO gives you and RX and instructions on when to start taking them. Then you see him in about one month. If you have problems in the mean time, do not go to your PCP, as I did. Call your ENDO and let them know about your issues.

brahmamama
Posts: 4
Joined: Oct 2011

error

brahmamama
Posts: 4
Joined: Oct 2011

My TT was 3/29/11, RAI 5/20/11 and my WBI 5/27/11. My Endo had not given me an RX for the synthroid. I took what I had before the surgery on 5/28/11 which was too low. Then my PCP doubled it overnight. NIGHTMARE! Make sure the ENDO gives you and RX and instructions on when to start taking them. Then you see him in about one month. If you have problems in the mean time, do not go to your PCP, as I did. Call your ENDO and let them know about your issues.

iggymurphy
Posts: 34
Joined: Sep 2011

I met with my Endo last week and they are hoping to do the RAI next week or early the week after (depending on TSH levels). He did mention synthroid. He said first to take cytomel for a few days then switch over to synthroid since synthroid takes so long to get into your system.

Thanks everyone. This process is so overwhelming and I have no idea whats going on. It seems like for everything I read there is something else out there that counters the advise. I am definitely Hypo now...super depressed and weepy all the time. My memory stinks too. I almost burned the kids mac n cheese!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network