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cravtap
Posts: 11
Joined: Mar 2006

I need some advise and help. I am having lung surgery on Jan 5th for a nodule of unknown type as of yet. I am praying it is thyroid! Now my question is does anybody know why I feel so terrible while on my synthroid and feel so wonderful when off of it and just taking cytomil??? Please if anyone can tell me and let me know if they think i should ask my Dr to please take me off of synthroid and just put me on cytomil if that's possible. I would appreciate any feedback! Thanks
cravtap

Georgyghee88
Posts: 5
Joined: Nov 2006

Hi Pat, it's Georgy. Cytomel is hard on the heart. It is not routinely given as the only thyroid replacement hormone. I doubt that anyone with a history of congestive heart failure would be considered for that. Hugs, Georgy

cravtap
Posts: 11
Joined: Mar 2006

Hi Georgy and Rustifox
Thank you both for the feedback although I feel there must be an answer for me as far as feeling better on my suppression meds. Are there others i can try? i was told yes there are. Is this true and can I try something else? maybe Synthroid is just not right for me. I read wher most of you are doing fine on your meds and living your life pretty fully and I wonder why I poop out so quickly and easily.
Thanks again
cravtap

Rustifox's picture
Rustifox
Posts: 131
Joined: Mar 2005

Sometimes "fine tuning" your thyroid hormone levels (while checking the TSH levels every 6-8 weeks, after any 'tweaks' of dosing, of course), can help you fell better.

It is not a surprise to feel wiped out when we are hypo, but surprisingly, we can also definitely feel this way when we are more towards 'hyper' states, with a very low/suppressed TSH.

When my TSH was .04, I could barely get the energy to walk across the room, yet at .336 - not that much higher - I regained that lost energy.

BUT - this always needs to be done in consultation with your doctors, of course, with repeated checking of your TSH levels as mentioned above with every change in hormone dose. If you have 'active' thyroid cancer, they will probably be less inclined to decrease the dose of thyroid hormones, even if you are in a hyper state, as this will increase your risk factors for persistant or recurrent disease.

Some people do find that adding a very low dosage of an anti-depressant, or even just adding a beta blocker does make them feel better. It will take away alot of the 'jittery' types of feelings that sometimes come with thyroid suppression, and also help alleviate a bit of this strain on the heart, (which can also make us feel absolutely exhausted to the bone).

Please do talk - very frankly - with your doctor(s) about how you are feeling. If your endocrinologist isn't listening, talk to your family doctor - hopefully they can find something that will help you feel more stable once you are back on the hormones again.

While there are many different 'brands' of levothyroxine, each using different fillers, in general they are very similar - but some have different bioavailability than others, which can make a difference, too. If your doctor does decide to change brands, we do still need to have our TSH checked again in about 6-8 weeks, as it can change quite dramatically, even though we are technically on the same dose. There is more info about this topic here:
http://www.aace.com/pub/pdf/guidelines/AACE-TES-ATA-ThyroxineProducts.pdf

But I think you may be referring to those who 'talk' on general thyroid boards - ie hypo or hyperthyroidism patients - who can 'afford' to have their TSH out of balance/suppression, that use products like Armour thyroid, or compounded T3/T4 preparations... and with our cancer status, we generally don't risk doing that - or the very few that do use them have also recognized they stand at a higher risk of having their cancer persist or return.

It's hard - but do consider asking your doctor whether an anti-anxiety/depressant type of medication, or perhaps a beta blocker might help you feel better... it's surprising how sometimes these can make a big difference in very low doses, and many thyroid cancer patients do find help with them. They 'block' some of the receptors that our hormones work on. Will be sending you good thoughts for your surgery! Merry Christmas to you and yours, and may 2007 bring your better health in the long run. Take care, and be kind to yourself, ok?

Rustifox's picture
Rustifox
Posts: 131
Joined: Mar 2005

Sorry to hear about this lung surgery, and I wish you the very best results from this.

Georgyghee is absolutely right, Cravtap.

Cytomel is also known as "T3". This is a very short acting form of a secondary thyroid hormone - and it acts like 'speed' or amphetamines on us. It works very much like a roller coaster, with highs and lows that 'spike' our thyroid hormones up and down, roughly every 4-6 hours, depending on how the doses are taken.

So on any given day with Cytomel, your TSH may be temporarily very low for awhile, making us hyperthyroid-like, then temporarily very high for awhile, making us more hypothyroid-like. This is not a stable situation for thyroid cancer, which can use those higher 'spike' levels of TSH as a 'growth factor'.

Synthroid is "T4". One of the most important things for our thyroid cancer treatment is to have as steady and stable of a supply of long acting hormones as we can, so the TSH doesn't 'feed' the cancer. This is why it is critically important to take a dose every day, and never even miss a day of hormones unless we are off them for scans, etc.

We need to have our TSH levels suppressed, almost into the 'hyperthyroid' state - generally between a TSH of .10 and .50 recommended in those without secondary risk factors, even lower in those who have active cancer being treated, or higher-as a heart cautionary measure-for those with cardiac conditions.

Even T4/synthroid can be hard on the heart - but definitely not as cardiac reactive as T3/cytomel - it is still a cardio stimulant.

When I took cytomel, I called myself the "Cytomel cyclone". I would race around the house cleaning like mad, get more done than at any time, and have energy to burn... but a few hours later, my body would 'crash', as those T3 hormones just don't maintain a steady state.

Sorry there aren't easier answers for you on this. For those who don't have thyroid cancer, sometimes they can 'play' a bit with these issues, and we see them experimenting with cytomel compounds, or even combined products like Armour Thyroid, derived from pig thyroids - but with our thyroid cancer status, it does not make it safe for us to use cytomel in the long run. All the best to you, and I hope your tests come back as clean as possible. Good luck with the surgery, Cravtap.

cravtap
Posts: 11
Joined: Mar 2006

Thank you Rustifox for all of that information and for the good wishes regarding my upcoming surgery. Although I am a bit frightened by this new surgery I know I have to face it and be strong enough to deal with whatever comes out of the situation and I am going to speak with my Doc tomorrow.
Thanks Again
cravtap

cravtap
Posts: 11
Joined: Mar 2006

Hi Rustifox,
Just a short message to say thanks and to let you know my lung nodule was made up of a cluster of blood vessels and muscle tissue. No cancer. I feel blessed! Also I am on a beta- blocker and an anti- depressant and have been for a while now and unfortunately it doesn't help at all. But again thanks for your advise!
Pat C
cravtap

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