It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Thyroid Disorders Message Board

  • newly diagnosed Cancer(+ over active, T3 toxicosis) HELP?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 10-07-2008, 05:16 AM   #1
    moonlightandjj
    Junior Member
    (female)
     
    Join Date: Jan 2005
    Posts: 14
    moonlightandjj HB User
    Question newly diagnosed Cancer(+ over active, T3 toxicosis) HELP?

    Hi
    I am so confused. Brief history last 2 years diagnosed T3 toxicosis / overactive thyroid. Treatment has been stop/block. I had a ultrasound scan and they found a 5cm nodule (2 inches in old money) on left side of thyroid towards the back. You can't feel in on examination as it is behind, from what I can gather. The joke is I dont have a frog in my throat but an an egg .
    Am on carbimazole 40mg and levothyroxine 75mg

    They are over 99.9% certain it is cancer just by going on it's size. I had an isotope scan last week, and waiting to see if it will come back all cold or hot etc.
    I was told RI is not an option only surgery. I dont know if I will just have nodule or some or all thyroid taken out yet.

    What I would like to know is this:

    My bloods have never been normal for a over 3 years ( otherwise I wouldnt of known about the thyroid problem in the first place and seen the doc lol)- they wont do surgery until my bloods are normal- why do bloods have to be normal before they do surgery? ( this rate I could be 104 and dead and buried )

    Is the reason I am not have a FNA because of the locations of the nodule?

    If my head is in a certain posistion ( asleep etc) I feel I have problems breathing and have to open my mouth to get more air in, also eating can also be a problem - could the nodule be causing this?

    How do they know what type of cancer it is? do they wait till after it is removed before finding out?

    And what if it is spread? - do they scan before surgery? - I have been having problems with lymp glands in my neck - have been on anti-botics and pencillin ( before I knew about nodule) and they still havent gone down. - I wonder if cancer has spread. ( I read they can remove gland at same time as nodule)

    And finally this sicky feeling I have been having for a while (again before I knew about the nodule)- it is getting worse -I keep expecting myself to look green, I can feel it raising through my body. Is it related? along with tiredness?

    I dont see my doc till for another 4 wks for the results and it is a long time to have these questions going around and not knowong who to ask.

    Can anyone help?

    Thank you for taking your time in reading this. Any help and advice would be gratefully recieved:-)

     
    Sponsors Lightbulb
       
    Old 10-07-2008, 05:29 AM   #2
    Reece
    Senior Veteran
    (female)
     
    Join Date: May 2005
    Location: NY
    Posts: 3,803
    Reece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB User
    Re: newly diagnosed Cancer(+ over active, T3 toxicosis) HELP?

    First, you absolutely can't be diagnosed with cancer unless you've had some sort of biopsy with cancerous cells. The larger the nodule, it's not necessarily the more likely cancer---there have been many people on this board with 5cm nodules without cancer.

    Yes, you have to have surgery to get that out, and see what it is. They should take the entire thyroid, and probably some extra lymph nodes to make sure they are benign.

    After surgery, if it's the usual types of thyroid cancer, (pappillary, follicular or hurthle) they give you RAI to irradicate the cancer in the thyroid bed and if it travelled anywhere else it will kill it too.

    Since they are definitely doing surgery, maybe they aren't worrying about the needle biopsies, although I had that, as well as an uptake scan, but surgery trumps them all anyway.

    Here's the key, you want a really great surgeon---not necessarily the one who diagnosed you---one who does many thyroids a week, preferably in a teaching hospital.

    I don't know why these people are so sure it's cancerous, size certainly doesn't determine that.

    You don't want to be hyper during surgery, because you can go into a kind of shock, and your blood pressure must be normal too.

    I think you should get other opinions to find a doctor that's not so panicky.

     
    Old 10-07-2008, 05:48 AM   #3
    mkgb
    Senior Veteran
    (female)
     
    Join Date: Aug 2006
    Location: Oak Ridge
    Posts: 6,705
    mkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB User
    Re: newly diagnosed Cancer(+ over active, T3 toxicosis) HELP?

    Who are you seeing to evaluate your nodule? An ENT or ENDO or general surgeon. I have an ENT that is monitoring mine. As to there determination of cancer by size alone. That is bull hockey. You can have huge benign nodules. Singular or multinodular. The only way to be sure is to do a complete biopsy of the nodule. A good ENT familiar with thyroid procedures will be able to remove your bad thyroid tissue, spare the parathyroid glands and remove any suspicious lymph nodes in the neck as well.

    My take on the refusal to do an FNA is location AND the fact that FNAs are not 100% definitive tests for cancer. There are false negatives that result from FNAs. Your nodule is LARGE. Your nodule is obstructing your airway and interferring with speech, correct? These factors make you a candidate for a partial thyroidectomy.

    Performing a RAI Uptake scan will allow them to determine if you have Graves and or just a hot nodule. If the nodule is cold the chances of it being bad go up.

    Now you mention that you have T3 Toxicosis. Have they checked your adrenal function to make sure that you are not hypoadrenal? When hypoadrenal your body ceases to stop conversion of T4 into T3. The result of such tends to be on goes hyperT in T3 while remaining hypoT in T4. Have they run the blood antibody tests for Hashimoto's and Graves?

    My mom was operated on hyperT. Her blood had to be normal with regards to infection. Here CBC was off and that delayed her for a bit. She had a PT of a single dead lobe. They left her hyper lobe to meet her needs for as long as it could hang out. That was about 10 years. Now she has to go through the thyroid med titration regime at 61. We tease each other often. My thyroid is near gone because of Hashi's. My hypoadrenalism and insulin resistance/reactive hypoglycemia developed after my MDs forced me to hang about with out treatment of my suboptimal thyroid state.

    Access and Gravesgirl would be better suited to help you. I am not as familiar with hyperT issues. I have Graves but my Hashimoto's kicked its thyroid. Normally if the thyroid is done in Graves loses its bite. I hope that the others respond here soon. I will try and point them to your thread. In the meantime I recommend researching thyroid specialized surgeons. Check out their complication rates and putpatient success rates. Find a surgeon the others respect and that performs a multitude of neck surgeries a week. My ENT has a day dedicated to thyroid procedures. He also has an associate that specializes in thyroids. Both have LOW complication rates and a great deal of success saving parathyroids during TTs.

    Sincerely,
    MG

    P.S. Reece is solid as well. you can learn a lot from her as well.
    __________________
    If we learn by our mistakes, I am working on one hell of an education.

    Last edited by mkgb; 10-07-2008 at 05:52 AM.

     
    Old 10-07-2008, 08:37 AM   #4
    moonlightandjj
    Junior Member
    (female)
     
    Join Date: Jan 2005
    Posts: 14
    moonlightandjj HB User
    Re: newly diagnosed Cancer(+ over active, T3 toxicosis) HELP?

    Hi
    thank you for your speedy replies.
    It is a relief to hear that the doc could be wrong and the nodule may not be cancerous after all even though it is large :-).
    To answer your questions:
    I see an Endo doctor, and my bloods are as follows:
    TPO (thyroid Preoxidase) - all I know is elavated
    TSH 0.01 (range 0.35-4.94) (always below range and never seems to change)
    Free T3 6.66/7.2 (range3.6-6.5) (always above moves between these figures shown)
    Free T4 Is always in the normal range.

    In one letter to my doc the endo consultant did say "this could be graves disease or possible a hot nodule". this was written 2 years a go. So graves has been mentioned - not to me personally lol.

    What throws a spanner in the works is I also have another medical condition, and when hey ask about pins and needles, shakes etc - I wouldnt know any difference as I have them anyway. I also lost a lot of weight (over half my body weight - I went down to 70lb but I still honst believe that is due to my other medical condition and not my thyroid. Food and I just didnt like each other.

    I just dont know where to go from here so to speak. Obviously get results from scan, and get the nodule out. IF it is cancerous get that sorted.
    If it wasnt cancerous, and again even if it is, what will happen afterwards.

    And more importantly - what if I also have another problem with my thyroid and they just take the nodule out?

    I am so confused, so say that is not nothing new lol. Problem is I want to know everything, even the operation, complication the lot ( the last operation I had for carpel tunnel put me in a wheelchair, so now I want to be totally imformed!)

    Thanks again

     
    Old 10-07-2008, 09:30 AM   #5
    Reece
    Senior Veteran
    (female)
     
    Join Date: May 2005
    Location: NY
    Posts: 3,803
    Reece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB UserReece HB User
    Re: newly diagnosed Cancer(+ over active, T3 toxicosis) HELP?

    My surgery went easy breezy....but I also had a top thyroid specialist surgeon in NY.

    There is a 1% risk of vocal chord injury (pretty rare, although some are left with a soft voice for months and temporary vocal chord paralysis and then get better), and there's also a risk of parathyroid injury which would mean you would need to take calcium, that's often temporary as well.

    I was up and about within a couple of hours of surgery. Get a top surgeon, and increase your chances of coming through great.

    You might have lost weight from the hyper situation, and the nodule is likely hot, spilling out extra hormone. This can also cause neuropathy, pins and needles type of stuff too.

    Keep in mind, they don't remove just the nodule (the whole area is pretty teeny to begin with) they usually remove it by lobe---one or both. But your nodule is the size of some thyroids, so it might be wise to get rid of the whole thing, because in the rare case it is cancer or precancer, you'd have to have another surgery to get rid of the whole thing.

     
    Old 10-07-2008, 09:31 AM   #6
    mkgb
    Senior Veteran
    (female)
     
    Join Date: Aug 2006
    Location: Oak Ridge
    Posts: 6,705
    mkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB Usermkgb HB User
    Re: newly diagnosed Cancer(+ over active, T3 toxicosis) HELP?

    Alright you need some blood work done at least. TSI and TRAB show Graves in 70% of Graves patients. TPOAb and TGAB are the positive identifiers of Hashimoto's. You need both Hashimoto's and Graves testing. The RAI uptake will determine or rule out Graves so you can skip the TSI and TRAb, unless you want a complete data set. However given the discrepancy of your T4 and T3, I would suspect Hashimoto's and a stressed adrenal system over Graves and think you definitely need the TPOAb and TGAb run. Now this is if you are not going with surgery. A good thyroid surgeon will be able to take one look at you thyroid and determine whether or not Hashimoto's is destroying the tissue. My Hashimoto's started out with my Ft3 levels running high and my TSH and Ft4 levels being normal. Then my FT3 levels jacked, my Ft4 levels plummeted and my TSH was in the out house.. but normal. All the Endos just looked at the TSH and didn't look at the rest of my issues. I have given 3 Endos their walking papers. It can take a WHILE to find a competent thyroid MD. I have went through 6 MDon'ts with regard to thyroid treatment. Now I have a decent set of MDo's.

    I think you need to request that your Endo run a COMPLETE adrenal function test on you.

    ACTH, DHEA, Cortisol, and Aldosterone - 8 am fasting blood serum tests
    24 hour saliva cortisol rhythm test
    ACTH stim test with associated horomes - a competent Endo will no what to do with this.

    If your adrenals are fatigued or dead then you need cortisol supplimentation to check your over conversion of T4 toT3 in the liver. This may be all you need. Too many MDs over look the fact that the adrenals are tightly linked to the liver and thyroid conversion cycle. The endocrine system as a whole must be carefully maintained and in balance.

    If your adrenals are at fault. removal of the mass is not going to change your issue of over conversion.

    If you have thyroid surgery.. which given your nodule size.. I suspect you are.. then you will have scarring that will ccomplicate any additional thyroid surgeries in the future. If you have Hashimoto's, you thyroid will die off completely eventually and it is better to have a TT than a PT performed. Hashimoto's itself causes scarring and complicates surgery and biopsies. A good ENT familiar with thyroids would be the best person to consult and discuss the thyroid surgery complications and procedures.

    Many have done it. My mom and two aunts have. Two of the three were hyperT during surgery. My mom only had a PT my aunts had TTs. My mom had issues with medication regulation with half of her thyroid remaining. My Aunts were able to quickly (6 months) regulate their thyroid meds. Toxicosis is a side effect that can occure when surgically removing a hyperT thyroid. You can counter it with anti-thyroid drugs in most cases. What you need is a competent MD. From what you say, I am not sure that you are working with competent MDS at this time. They are too willing to jump to conclusions with out looking at all possibilities. The biggest over sight is the lack of investigation into your adrenal function IMO.

    MG
    __________________
    If we learn by our mistakes, I am working on one hell of an education.

     
    Old 10-07-2008, 10:17 AM   #7
    accessn12
    Senior Veteran
    (female)
     
    Join Date: Oct 2006
    Location: greasy rock, tn
    Posts: 3,338
    accessn12 HB Useraccessn12 HB Useraccessn12 HB User
    Re: newly diagnosed Cancer(+ over active, T3 toxicosis) HELP?

    Hi, I was asked to pipe in. Reece is one of our top experts around here on thyroid cancer. I'm just a long term hyper. I agree with her that thyroid cancer is not a certainty in this case but a nodule that large can very easily be causing all kinds of problems.

    If you are the impatient type, such as I am, I've found that calling the doctor's office and telling them I will be by to pick up a copy of my whatever result gets me a copy in hand to study long before I see the doctor. They cannot deny the request. If they give you any flack, just mention the word HIPAA. That's the law that says you can have it. But since you mention carbimazole, I've got a feeling that you may be in britain??? Your laws say you can have it too. I just don't know which one.

    As to the symptoms, the sickly feeling is real. It's probably related to the thyroid. Two tricks I found very helpful are to never allow the stomach to be empty by continuous munching and ginger. I like the crystallized form of ginger that can be got in the spice isle of the grocery or online by the pound. I nibble on that and it settles the tummy real nicely. It's hard to overcome the tired. Your body is in overdrive and it gets worn out, then you lay down and can't sleep and you get tireder. I find Vistaril helps with that some. Helps settle me down so I can sleep and it also is an anti-nausea med. Non-addicting and doesn't hang you over like a sleeper can.

    I get really bad pins and needles when I'm hyper. Can't help you there. The only thing you can do about that is get rid of the hyper. But don't go hypo cause you get them then too.

    The T3 is suppressing your TSH. I'm no doctor but I've played with my own thyroid for years. Was on block and replace for a while. If my labs looked like that, I'd request an adjustment in meds. I'd ask for 30mg carb cause that's a high enough suppressive dose for most people, and being as small as I am, maybe half to 2/3's of the thyroxine and the addition of about 80-120mg of propranolol to suppress some of the conversion of t4 to t3 and to help with some of the obnoxious symptoms. In the alternative, perhaps a switch to PTU instead of carb which also would suppress the conversion and a reduction in thyroxine might accomplish the same goal. If your labs have looked like that for years, it's obvious you aren't on either the proper medication or proper dose.

    It's pretty important that you be as close to euthryoid prior to surgery as you can be. The risk of thyroid storm is what they're trying to avoid. It's not something you want to have to experience.

    Now if it is cancer, the lucky thing is you don't have to rush. You have time to research and to think and to make a rational decision as to how you want to handle it. I don't blame you for being cautious. It's a good way to be.

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Newly diagnosed~HELP! sadies mom Multiple Sclerosis 14 04-02-2008 10:02 PM
    Newly Diagnosed...Help momfirst Autism Spectrum 9 10-19-2006 12:41 PM
    Could this be ovarian cancer! HELP! I am scared to death llcoolbeans1 Cancer: Cervical & Ovarian 7 01-15-2005 12:32 AM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 01:12 AM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!