???'s from a NEWBIE

Paideia

I posted in another group (military) but think I'll have better luck with this more frequented site. I have deleted the VA/MIL specific questions, but if someone is mil. and can go to that post, I had quite a few specific questions.

Following are more generalized questions pertinent to my Papillary Cancer and subsequent thyroidectomy:

-How long after RAI will one feel "different?" At what point can Cytomel be resumed?

-Speaking of Cytomel. It seems as if most people say they take Synthroid (or other t4 med). Am I on cytomel just because I am pending RAI June 4? Will I then be switched to something else? I take 50 MCG tablets daily? Is this enough? Is it not enough? What is considered an "average" dose?


- I worry I'll barely be able to do my job due to fatigue and brain mush post surgery. Will return at the 2 week mark. Anyone found difficulty working at this point? How about your ability to work during the 2 weeks prior to RAI, while on the low-iodine diet and no hormone pills??

-Any body have experience with weight gain after surgery and before getting the hormones evened out (surgery was 26 April/RAI in June)? I eat constantly, till my belly hurts. It is gross. Even had a dream about eating and I RARELY remember my dreams. This is out of control and I can't find many thoughts on this in the various groups I've perused.

Any and all replies would be very much appreciated.

Paideia

Rustifox

Hi, Paideia - sorry you have had to join us.

There is also another group - Thyca.org - that is very, very busy, and may also be of value to you. Here are the respective websites, for the Association, the local support groups, and the website for the online support group, too:
http://www.thyca.org
http://www.thyca.org/support.htm
The online group is located on yahoo forums - free to join - but be aware that it is a very, very busy group, with participants from all over the world, so I chose the 'no emails' option (sometimes there were over 100 posts to the group a day, so the email inbox could be overwhelming):
http://health.groups.yahoo.com/group/Thyca/

After our RAI treatments, it takes anywhere from 3-4 weeks to 3-6 months, depending on how long it takes to get your hormone doses right, to feel totally normal...each time our hormone doses are changed, it takes approximately 6-8 weeks for the new dose to take full effect.

But most people start to feel a little more human again and less "hypo" by the 3-4 week mark after starting your hormones.

We don't go back on the cytomel after our treatments - normally, we are placed on T4/levothyroxine only.

Cytomel is not a 'stable' drug - you've probably noticed large variations in how you feel through the day/into the evenings while taking this short acting product. It provides short acting energy - but that is not a good thing to keep us healthy in the long run.

Cytomel allows our body to have wide fluctuations in our hormone levels on a daily basis, so while many people dealing with strictly hypothyroidism, instead of thyroid cancer, will debate it's merits, for us the 'stable' TSH levels is critically important.

Synthroid, or similar "LT4" - levo-T4, or synthetic T4 products, provide more stable and long acting levels of both T4 and T3 in our bodies. (T3 is synthesized in our tissues - our body makes it's own T3 in the cells after taking our hormones.)

It is recommended that we take a 'brand name' of levothyroxine - ie synthroid, levoxyl, etc - rather than generics, due to bioavailability issues, so if your pharmacist and/or drug plan suggests otherwise, stick to the 'brand names'.

'Suppression' - keeping our TSH very low, so we don't 'feed' or allow any remaining cancer cells to grow - is an important part of our ongoing cancer treatment.

There is more info on the 'generic vs brand name' levothyroxine issue here:
http://www.thyroid.org/professionals/advocacy/06_10_04_bioequivalence.html

Because of this 'need for stable TSH levels', most endocrinologists will not permit thyroid cancer patients to take cytomel on a long term basis.

We take this only when preparing for RAI treatments and/or I-131 scans, to keep us more comfortable while the long acting hormones are 'drained' from our bodies.

So, yes - you are only on cytomel because you are preparing for treatment, and will likely be prescribed synthroid, levoxyl, or unithroid after your treatment is over.

The 'average' dose of cytomel varies - 50mcgs is quite a large dose. Personally, I took 1/2 of a 25mcg tablet, and felt 'speedy' even taking that much cytomel - but everyone is different.

Many doctors will prescribe 25mcgs, and even then, recommend that you do not take any of it after about 4-5 pm - it can definitely interfere with sleep cycles.

If the dose were too high for you, you would likely experience some insomnia, strange/active dreams, possibly palpitations - and the hunger with this dose of cytomel is not unusual, either. It essentially stimulates a 'hyperthyroidism' type of state in your body - and raging hunger is pretty common with that.

The weight gain is very common in hypothyroid states, too, and most likely to disappear once your TSH is stabilized with hormones in a few months. There is a good list of some of the more common 'hypo' symptoms on page 4 of this document:
http://www.thyroid.org/patients/brochures/Hypothyroidism _web_booklet.pdf

If your work requires a sharp mind and decisive actions, you must take some time off for the 2 weeks prior to, and at least 2 weeks after your RAI treatment.

Once you stop the cytomel, you are/will be both medically and legally impaired - by acute and severe hypothyroidism - and definitely should not be driving, either. Most doctors recommend putting away the car keys for that 2 weeks prior/2 weeks after, with good reason - our reflexes are significantly slowed, and our judgement is altered, too... so if at all possible, you do need to take medical leave during this 4 week time period as a minimum, and wait until you have been cleared to return to active duty.

Even if your job just entails minor clerical issues, accuracy and function can become quite a problem when we are off all hormones. Carpal tunnel is common, as are arthralgia and myalgia types of symptoms.

In addition, you will have about a week after your treatment where you are, technically, radioactive - detectable by most radiation detectors, and this can potentially harm other people's thyroids, so isolation from others is normally expected for at least 1 week following high dose treatments.

It is also very, very important to stay away from pregnant women and/or children for at least 10 days - some radiologists recommend 2 weeks - after your treatment dose, even trying to avoid incidental contact.

There are some good guidelines here for RAI treatment doses:
http://www.mythyroid.com/radioactiveiodinecancer.html
And here is another set:
http://www.radiologyinfo.org/en/pdf/radioiodine.pdf

I personally could not, physically or mentally/emotionally, have worked - even at a very menial job - during the 2 weeks after my treatment. While you will be very, very 'hypo' going into the treatment, your body will briefly get even MORE hypo after it - the intention of the treatment is to wipe out thyroid tissues of any kind in your body... so until the time passes, permitting hormones to be absorbed back in the cells of the body, your judgement, reflexes, and even emotional state will likely be quite impaired.

After treatment, it is a time to be very kind to yourself, while rebuilding your energy. Frequent naps will likely be needed during that last 2 weeks and the 2 weeks following the treatment dose... so do try to take the time. Most doctors would insist you remain off of active duty, Paideia.

Hope some of this helps. I have a personal web page done up here on CSN that has lots of links that may be of interest to you - things like guidelines for treatments, the importance of suppression therapy, etc. All the best to you.

Paideia

Rustifox said:

Hi, Paideia - sorry you have had to join us.

There is also another group - Thyca.org - that is very, very busy, and may also be of value to you. Here are the respective websites, for the Association, the local support groups, and the website for the online support group, too:
http://www.thyca.org
http://www.thyca.org/support.htm
The online group is located on yahoo forums - free to join - but be aware that it is a very, very busy group, with participants from all over the world, so I chose the 'no emails' option (sometimes there were over 100 posts to the group a day, so the email inbox could be overwhelming):
http://health.groups.yahoo.com/group/Thyca/

After our RAI treatments, it takes anywhere from 3-4 weeks to 3-6 months, depending on how long it takes to get your hormone doses right, to feel totally normal...each time our hormone doses are changed, it takes approximately 6-8 weeks for the new dose to take full effect.

But most people start to feel a little more human again and less "hypo" by the 3-4 week mark after starting your hormones.

We don't go back on the cytomel after our treatments - normally, we are placed on T4/levothyroxine only.

Cytomel is not a 'stable' drug - you've probably noticed large variations in how you feel through the day/into the evenings while taking this short acting product. It provides short acting energy - but that is not a good thing to keep us healthy in the long run.

Cytomel allows our body to have wide fluctuations in our hormone levels on a daily basis, so while many people dealing with strictly hypothyroidism, instead of thyroid cancer, will debate it's merits, for us the 'stable' TSH levels is critically important.

Synthroid, or similar "LT4" - levo-T4, or synthetic T4 products, provide more stable and long acting levels of both T4 and T3 in our bodies. (T3 is synthesized in our tissues - our body makes it's own T3 in the cells after taking our hormones.)

It is recommended that we take a 'brand name' of levothyroxine - ie synthroid, levoxyl, etc - rather than generics, due to bioavailability issues, so if your pharmacist and/or drug plan suggests otherwise, stick to the 'brand names'.

'Suppression' - keeping our TSH very low, so we don't 'feed' or allow any remaining cancer cells to grow - is an important part of our ongoing cancer treatment.

There is more info on the 'generic vs brand name' levothyroxine issue here:
http://www.thyroid.org/professionals/advocacy/06_10_04_bioequivalence.html

Because of this 'need for stable TSH levels', most endocrinologists will not permit thyroid cancer patients to take cytomel on a long term basis.

We take this only when preparing for RAI treatments and/or I-131 scans, to keep us more comfortable while the long acting hormones are 'drained' from our bodies.

So, yes - you are only on cytomel because you are preparing for treatment, and will likely be prescribed synthroid, levoxyl, or unithroid after your treatment is over.

The 'average' dose of cytomel varies - 50mcgs is quite a large dose. Personally, I took 1/2 of a 25mcg tablet, and felt 'speedy' even taking that much cytomel - but everyone is different.

Many doctors will prescribe 25mcgs, and even then, recommend that you do not take any of it after about 4-5 pm - it can definitely interfere with sleep cycles.

If the dose were too high for you, you would likely experience some insomnia, strange/active dreams, possibly palpitations - and the hunger with this dose of cytomel is not unusual, either. It essentially stimulates a 'hyperthyroidism' type of state in your body - and raging hunger is pretty common with that.

The weight gain is very common in hypothyroid states, too, and most likely to disappear once your TSH is stabilized with hormones in a few months. There is a good list of some of the more common 'hypo' symptoms on page 4 of this document:
http://www.thyroid.org/patients/brochures/Hypothyroidism _web_booklet.pdf

If your work requires a sharp mind and decisive actions, you must take some time off for the 2 weeks prior to, and at least 2 weeks after your RAI treatment.

Once you stop the cytomel, you are/will be both medically and legally impaired - by acute and severe hypothyroidism - and definitely should not be driving, either. Most doctors recommend putting away the car keys for that 2 weeks prior/2 weeks after, with good reason - our reflexes are significantly slowed, and our judgement is altered, too... so if at all possible, you do need to take medical leave during this 4 week time period as a minimum, and wait until you have been cleared to return to active duty.

Even if your job just entails minor clerical issues, accuracy and function can become quite a problem when we are off all hormones. Carpal tunnel is common, as are arthralgia and myalgia types of symptoms.

In addition, you will have about a week after your treatment where you are, technically, radioactive - detectable by most radiation detectors, and this can potentially harm other people's thyroids, so isolation from others is normally expected for at least 1 week following high dose treatments.

It is also very, very important to stay away from pregnant women and/or children for at least 10 days - some radiologists recommend 2 weeks - after your treatment dose, even trying to avoid incidental contact.

There are some good guidelines here for RAI treatment doses:
http://www.mythyroid.com/radioactiveiodinecancer.html
And here is another set:
http://www.radiologyinfo.org/en/pdf/radioiodine.pdf

I personally could not, physically or mentally/emotionally, have worked - even at a very menial job - during the 2 weeks after my treatment. While you will be very, very 'hypo' going into the treatment, your body will briefly get even MORE hypo after it - the intention of the treatment is to wipe out thyroid tissues of any kind in your body... so until the time passes, permitting hormones to be absorbed back in the cells of the body, your judgement, reflexes, and even emotional state will likely be quite impaired.

After treatment, it is a time to be very kind to yourself, while rebuilding your energy. Frequent naps will likely be needed during that last 2 weeks and the 2 weeks following the treatment dose... so do try to take the time. Most doctors would insist you remain off of active duty, Paideia.

Hope some of this helps. I have a personal web page done up here on CSN that has lots of links that may be of interest to you - things like guidelines for treatments, the importance of suppression therapy, etc. All the best to you.

Rustifox,

I just wanted to say thanks so VERY MUCH for your many answers which helped me so much in understanding all of this. I've read your reply many, many times and love all the references you provided.

You are the best,
Paideia

Rustifox

Paideia said:

Rustifox,

I just wanted to say thanks so VERY MUCH for your many answers which helped me so much in understanding all of this. I've read your reply many, many times and love all the references you provided.

You are the best,
Paideia

I'm so glad they have helped, and thank you so much for your kind words!

When I was first going through the stages you are now, I didn't find these groups (and didn't know how an 'email' group operated).

I ran into some pretty serious troubles, even to the point of hallucinations and heart issues from being too hypo.

I was left too hypo for far too long by the distant cancer agency that was handling my case, which was further complicated by a major infection on top of it - and ended up a very, very sick gal. My TSH was 64 by 4 weeks after the completion thyroidectomy, and through the roof by the time they finally started the hormones four weeks later, at almost 9 weeks after the 2nd surgery and about 17 weeks after the first surgery - all with no hormones of any kind, not even cytomel, etc... argh. It was truly awful.

After all that was over, I vowed that I would try to make sure I knew as much as I could about what we go through in future, and make sure that no one else ever went through that, if I could help it.

These two links are excellent resources to check suggested guidelines for our treatment plans; they are clinical (ie made for doctors), but have lots of 'plain language' detail that we can use, too:
http://www.nccn.org/professionals/physician_gls/PDF/thyroid.pdf
http://www.liebertonline.com/doi/pdf/10.1089/thy.2006.16.ft-1
(if the 2nd one says 'no access', just click on 'home' at that site, then try the link again -it will set a cookie, and then you'll be able to access the document).

I know you must be ready for your treatment dose pretty soon; here are some 'tips' that can help with some of the side effects you may encounter - again, everyone is different; some will have very few symptoms, and others will have a 'laundry list' of hypo symptoms... hopefully you will experience the least possible!

Metallic taste in mouth: swish, rinse mouth and gargle a few times a day with a tablespoon of baking soda in a glass of water; also, try using baking soda toothpaste instead of the ones heavy on the flouride - the flouride can seem to make the metallic taste worse.

Dry skin/hair: Try to use as natural of products as you can while you are going through this - ie goat's milk or a very, very mild soap; baby shampoo's, etc - your skin becomes very absorbant when really hypo.

The dry hair can take awhile to grow out; I have not yet found a product that prevented it from going wonky from hypo. - I got my hair cut short, then cut it again at 3 months and at 6 months, to cut off the dryest parts of the hair. My hairdresser said she could 'feel' the damaged areas of it - it was quite noticable for me. It's important to be very cautious about using a chemical process when your hair is like that - ie perms or coloring it -as it can damage the hair more, and also give 'odd' results - ie different color than normal, or perms turn way too strong for it.

Dry eyes, dry mouth: consider using replacement tears, and replacement saliva products - as natural of ones as you can.

Constipation: This can be quite troublesome after our treatment dose, and you do need to 'get things moving', to make sure your body eliminates the radioactive materials... it can also interfere with the intestine/abdominal portion of your scans after the treatment. Milk of Magnesia works fairly well to 'get things moving', along with natural stuff like eating prunes, etc.

Some of us will get temporary things like restless legs syndrome, and muscle/nerve reactions to the hypo state. It can be quite uncomfortable - for me, the restless legs thing was brutal, and reoccurs every time I have 'gone hypo' for scans, treatments, etc.

Insomnia can be a real problem after treatment doses, and restarting the hormones. Don't let it go... if you end up going a few days without sleeping, or things like restless legs are disrupting your sleep, it's important to treat those symptoms, even though the symptoms are temporary. I 'left it' for far too long - my legs started doing spontaneous 'myoclonic' types of jerking, and went about 4 days with literally zero sleep... not a good thing while trying to recuperate, trust me... ;-)

Ask your family doctor for prescriptions to help with symptoms... for example, with the restless legs, I found a very, very low dose of clonazepam made a huge difference; my doctor also prescribed a very, very low dose of ativan for the anxiety and insomnia. Be aware that your 'normal' dose of any of these types of medications, if you take them, can be WAAAYYY too much when you are hypo - the body will often respond completely to very low doses; almost like a child's dose often works just fine.

Again -don't let any of this email scare you at all - it is quite possible you will suffer none of these symptoms... but nice to know that they are relatively 'normal' if you do, too.

Thanks again for the kind words, and I hope that the treatment dose goes as smooth as silk for you.

Trying to take it 'One day at a time, one step at a time, one treatment at a time' worked well for me. As my Dad used to say, "The best way to eat an elephant is one bite at a time...". Take care, and be kind to yourself.