Thyroid Cancer Survivors - Are we really that different???
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ButterflyBites
Posts: 36 Member
I went to a rather depressing doctors appointment on Monday - went to get my depression/anxiety under control and left wanting to cry.
It's amazing the things I find out or am told after almost 5 years - My doctor basically told me that I/we (those who have had thyroid cancer) cannot be treated the same as those who are hypo/hyper or have hashi's. He basically said our main purpose for being medicated is to make sure we do not have a recurrence, our levels NEED to be lower and that means that we won't feel as good as others because their levels need to be higher than ours, he said I will not be able to lose weight like people being treated for hypo/hashi - he basically told me I/we are in the 2% and that our main/only focus is to keep our thyroid cells inactive....he was saying that if our thyroid cells are active that is like opening the door for the cancer to revisit. I'm SO confused. Am I really at the mercy of thyroid cancer (which I thought was gone)? I guess I never understood that recurrence is the only thing I am trying to fight, not the hypo symptoms.
I welcome any insight anyone has on this........
It's amazing the things I find out or am told after almost 5 years - My doctor basically told me that I/we (those who have had thyroid cancer) cannot be treated the same as those who are hypo/hyper or have hashi's. He basically said our main purpose for being medicated is to make sure we do not have a recurrence, our levels NEED to be lower and that means that we won't feel as good as others because their levels need to be higher than ours, he said I will not be able to lose weight like people being treated for hypo/hashi - he basically told me I/we are in the 2% and that our main/only focus is to keep our thyroid cells inactive....he was saying that if our thyroid cells are active that is like opening the door for the cancer to revisit. I'm SO confused. Am I really at the mercy of thyroid cancer (which I thought was gone)? I guess I never understood that recurrence is the only thing I am trying to fight, not the hypo symptoms.
I welcome any insight anyone has on this........
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No we really are not, especially for those of us with a total thyroidectomy. The goal is keep TSH as low as possible and closer to a 'hyper' state regardless.
How big was the mass when you were detected and what were the biopsy results if you care to share? Mine was a fantastic early detection with 2mm focus on the isthmus, so minimal chance of metastasis and lymph comes back looking clear on every scan.
Your doc is operating in the most conservative manner, which is good, but sounds like you guys need to communicate better on your wants/needs/concerns.0 -
I was hoping you would weigh in
Mine also an early detection - I would need to read my biopsy results again as I do not want to state in the size incorrectly and I have had so many numbers running through my head. Luckily my tumor markets and scans have been coming back clean - I don't know if they feel their is more risk because I still have thyroid tissue that was left after my second surgery.
You are right, I need to commute more with my doctors and make sure I am fully understanding everything that is said. I think my problem is I tend to block out what to me sounds negative when really that is the most important information for me to retain.0 -
Hooray for early detection!!!
If your scans are coming back clean then your chances of recurrence are basically zero.
What your doc is doing is risk mitigation and eliminating cancer as top priority. However you need to stress how difficult it is to function with depression/anxiety. Doctors are typically not subjective, so you need some objective data for him to work with. A diary is a good start, document your mood and potential triggers and try to identify any commonalities.
I have friend going through much of the same and she read "Happiness Is a Serious Problem: A Human Nature Repair Manual" - I have not read it yet, but looks very interesting (I'm a fan of behaviorist philosophy) and cheap. Picked up a used copy for $2.0 -
The first part is correct, we are kept at zero to try to prevent re-occurrence. And re-occurrence depends on how effective the RAI was. I had my TT three years ago and a re-occurrence early last year. It's amazing how much changed in just three years, let alone five.
I did mention the weight-loss problem to my endo and I was told no, I could not blame weight on the medication or my levels. That appointment is what brought me to MFP in the first place and sure enough, I had a lot of changes to make. The first being how I took the medication. I learned through this group and the Thyroid Cancer group that I was actually taking it wrong. Then I discovered through calorie logging that I really was making some terrible choices with food. These steps didn't solve all the problems, but they helped a lot.0 -
I'm confused, as I understood it TSH levels in thyroid cancer need to be suppressed right (please tell me if I'm wrong)? Doesn't that mean that you would be on a high dose of levo/synthroid? That would mean theoretically that it should be easier to lose weight. Does your doctor know how the thyroid works??? Unfortunately regardless of all of this you still need to put in the effort to lose the weight no amount of thyroid replacement will do that for you but the good news is it can most definitely be done. Although 'normal hypo' I have lost 63lbs and if I can do it anyone can!0
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I'm confused, as I understood it TSH levels in thyroid cancer need to be suppressed right (please tell me if I'm wrong)? Doesn't that mean that you would be on a high dose of levo/synthroid? That would mean theoretically that it should be easier to lose weight. Does your doctor know how the thyroid works??? Unfortunately regardless of all of this you still need to put in the effort to lose the weight no amount of thyroid replacement will do that for you but the good news is it can most definitely be done. Although 'normal hypo' I have lost 63lbs and if I can do it anyone can!
The concern here is not weight loss, but anxiety brought on from an induced hyperthyroid state.
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Is there a thyroid cancer group??????0
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Beg pardon, I've seen others on here have benefited from different doses of medication on different days so the total dose averages out to a better level for them than the standard 25, 50 and 100 etc t4 scripts permit.
I wondered if Butterfly could benefit, if something like this could allow her hyper symptoms to lessen. Naturally this would need discussing with the doctor to obtain a parallel prescription. (It may help to take a friend with you to an appointment to hear what you do and be someone to discus anything your not sure of later on). The idea may need some selling to the doctor because a degree of trial and error not to mention trust, will be needed to discover her best level. Cutting pills is never a good idea, it is so inaccurate, and generally not encouraged by the companies for that reason. If it were possible to try a dose say 25 fewer one day and normal the next the difference being 12.5, were this to be too little or much of a reduction over time, then more or fewer normal days could go with one lesser one.0 -
I'm confused, as I understood it TSH levels in thyroid cancer need to be suppressed right (please tell me if I'm wrong)? Doesn't that mean that you would be on a high dose of levo/synthroid? That would mean theoretically that it should be easier to lose weight. Does your doctor know how the thyroid works??? Unfortunately regardless of all of this you still need to put in the effort to lose the weight no amount of thyroid replacement will do that for you but the good news is it can most definitely be done. Although 'normal hypo' I have lost 63lbs and if I can do it anyone can!
The concern here is not weight loss, but anxiety brought on from an induced hyperthyroid state.
Apologies must have read the post wrong i should really pay better attention. @butterflybites I'm so sorry to hear you struggle with anxiety/depression it's not a pleasant state to be in, I hope there is something the doctor can do for you to help mitigate that nasty side effect. Maybe alternative to the generics may help aid this, some people just do better on branded T4 or even combination therapy (T4 with T3) or 'naturals' like armour. Do you think he/she will be open for you to try this, may be worth asking about.0 -
I appreciate all of the insight - I have been lacking when it comes to MFP so I apologize for not answering.
Fuzzipeg - I have been doing just that, on my own and it seems to help some......my levels came back great so I am continuing to do so.
My endo refuses to try a different medication for whatever reason so I am doing the best I can with what I am given.0 -
I'm so pleased you've found your own way to ease things a little, while keeping yourself safe. Thank you for being able to share, things take time. I'm sure many of us will be pleased for you. All any of us want is for more of us to become well.
I really wish someone could tell us all, with thyroid and related issues, why many/most in the medical profession seem to have a vested interest in keeping so many of us unwell? and sometimes out of the workforce. Doing the best we can with what we are given is often all many of us can do. Its as if we're being told this is the required treatment for you and anyone else in your position, get on and comply.............. even if it makes you more ill or differently ill, and your reactions are on the "contra indications" list.
No one actually wants, chooses to have a thyroid complaint, do they?0 -
There is a Thyroid Cancer group. We're at http://community.myfitnesspal.com/en/group/11825-thyroid-cancer-thyroid-problems0
