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New with Tha cancer and very confused about treatment.

margaretta
Posts: 1
Joined: Aug 2005

Hi everybody,
I'll try to explain the best I can in English what's my problem.
I'm 32 female Polish,6 years ago I came to live in US and decidet to stay here, so forgive me please for my language mistakes:)
I've been diagnozed that I have depression(pannic attack, etc.) about 10 years ago when my mother died for cancer(no thyroid).
I've been diagnozed that I probably had a thy cancer in Feb'05(ultrasound, needle biopsy), but doc wasn't sure about that(biopsy"atypical cells").
I don't have insurance, so I went to county hospital. First surgery July'05 removed right side of thy, biopsy result:
"...follicular carcinoma,oncocytic type, with multifocal capsular and vascular invasion, surgical margins free of tumor, T2 Nx Mx... ... round nodule measuring 2.7x 2.5x 2.2 cm..."
Second surgery- 3 weeks after August'05 to total remove thyroid. Docs didn't inform me how would I feel with a hormonal therapy and gave me Cytomel 25 mcg daily. In a couple days i felt like one big mess:stomach, could't sleep, weight gain very fast, tired, etc plus imidiately huge depression came back to my life. I really was going crazy, I found this web site, read and tryed to calm down myself. I followed the doctor's appointment and told them how I feel- they inform me it's mostly from depression(nobody even mension about hormon levels, blood test). I deel with my depression since '94, so I knew imidiately something is wrong, I know my depression symptoms. So here's what the docs did; They put me on Cytomel 50mcg(25 twice a day) and scheduled my Iodine Therapy on November'05. Two weeks before iodine therapy I have to complitely stop Cytomel.
I have had my blood test diagnozed in this hospital only 4 times: before and after each surgery. They never inform me what is my calcium level or nothing. One young doc just told me to take couple Tums a day if I'll fell not good with my stomach.
I want to go to out of hospital doctor to have a second opinnion about my treatment, but becouse I don't have insurance i want to bring him as many documents and tests as possible to a visit. So I have a lot questions, please help me:
- should I take a Cytomel till the 2 weeks before Iodine therapy or maybe they supposed to give me something else. Now, when I have a bigger dozage of Cytomel I fell better(2 days now), but I'm affraid that I'll start feel symptoms from the high thy level in a couple of days- already have headaches, musce pain
- what kind of blood test I should do before I'll go to doctor- I mean calcium level and something else?
-what about the scan and when they should do it- now or before/after RAI; should it be full body scan or head/ neck only?
-I find out my dozage of RAI it will be 200 mci-isn't it too much?
- low iodine diet-when? How about my diet now?
- how shuld I know what stage is my cancer; docs inform me 3 times: first time after first surgery they told me it's I-st stage, afterbiopsy it's II-nd stage and now they told me it's III-rd...
Well, I'm sorry that I asked so many questions, but I really fell lonely now and each time I ask them(county hospital) docks don't give me any details.Last time I heard that everything will be fine and everything is from depression-no sens to me. They make my depression bigger because I'm not informed enough.
Waiting for help from people who've been through this, thanks.
Malgorzata.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

You may want to contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day to assist you with your questions. They can be reached at 1-800-227-2345 or by clicking on the "Contact ACS" link at the top of the page.

Take care and be well,

Dana
CSN Dana

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

Hi, Margaretta
Don't worry about your english at all, Margaretta - I understand you very well, and am sorry you are going through this.

Keep in mind that I am not a medical professional, just another patient like you, but I can give you some answers to a few of your questions.

Yes, we do often take the cytomel until 2 weeks (14 days) before the radioactive iodine treatment. This is normal.

We aren't permitted to take our 'real' hormones again until after our RAI (radioactive iodine) treatment - then the doctors will prescribe Synthroid, or a similar 'main' replacement for you.

The reason we can't have this before our treatment is that the treatment works best when we are very 'hypothyroid'. If we had the 'regular' hormones in our tissues, then they will not be hungry for the radioactive iodine - and the treatment would not work as well that way.

Cytomel is very powerful - and it may be that 25mcgs, twice a day, may be too strong for you. For me, I only took 1/2 of 25mcgs in the mornings - and none at all in the evenings.

If you take it too late in the afternoon, it will keep you up all night. Because it is short acting, you may feel a bit like you are on a roller coaster - loads of energy for the first few hours that you take it, and then very tired when it 'wears off'.

Cytomel leaves the body very quickly, which is why you only have to stop taking it at 2 weeks before the RAI treatment. With Synthoid/levothyroxine - our main hormone - it takes 6-8 weeks for it to slowly go out of our system. That is why you can't take this now, if you are having a treatment.

200mCi's of radioactive iodine is 'normal' for someone who has had a bigger tumor, with any possible spread to the lymph nodes, or vascular invasion, etc, or a more aggressive type of cancer.

Follicular. and an onoclytic variant is a bit more aggressive, Margaretta, so it is a good thing that you are having a higher dose of RAI. Some people even get doses higher than that, so don't worry - I have heard of some folks having 300 or more mCi's with very aggressive thyroid cancer.

Hypothyroidism - which happens while your body is running out of the hormones, does affect us. It does sometimes cause depression, or increases existing health issues.

Copy this link into your browser - it will tell you all about hypothyroidism - there is a list of some of the symptoms on page 4, I think:
http://www.thyroid.org/patients/brochures/Hypothyroidism%20_web_booklet.pdf

Here is a good list of information for the newly diagnosed:
http://www.thyca.org/newly_diagnosed.htm

If you are feeling very rough already, ask the doctors to 'check your TSH level'. Normally, this needs to be at least 30, and some doctors prefer it to be above 50 to have radioactive iodine treatments done.

The reason we start to feel so rough/different is that acute hypothyroidism is normally anything above 25. The thyroid operates your metabolism - it controls the speed of your breathing, temperature, heart rate, etc. So, it isn't unusual to feel rough as we go hypo...

If you feel tingling around your mouth, fingers, etc, it is possible your calcium is low. BUT - they would need to check 'ionized calcium' - this blood test is a very special one, that shows if your body is handling the calcium correctly. About a week before your treatment dose, the doctors should also test your 'thyroglobulin and thyroglobulin antibodies'. This blood test sometimes will give information as a cancer marker - and it is most accurate when we are very hypo, off of our main hormones.

It is pretty normal to gain some water weight as we get hypo, too - this weight should come off once you are back on the hormones, after your treatment.

Headaches are fairly normal with cytomel - some people don't take it at all, Margaretta, and just go hypo 'naturally'. It might be that you are taking too much for you - or, you might want to try cutting the tablets in half, and taking 1/2 first thing in the morning, then 1/2 again around noon or 1pm or so. I wouldn't take it any later than 4 pm in the afternoon, tho, as that could keep you up all night! It is kind of like 'speed' for our metabolism while we go hypo.

Unfortunately, muscle pains are fairly normal for us when we go hypo, too; some of us get muscle cramps and pains, in both our legs and arms. Try not to strain yourself too much while you are getting ready for treatment - be kind to Margaretta!

The best scan is normally done about 4-10 days after your treatment dose, and it should be a WBS - whole body scan.

You need to start the low iodine diet 2 weeks (14 days) before your treatment dose - so it is best to start the same day as you stop the cytomel. Here is some good info on the low iodine diet:
http://www.thyca.org/ThyCa%20Cookbook%20011804.pdf

Your diet now doesn't matter, Margaretta. The only thing to be careful of is that you never want to take calcium at the same time as your hormones - and avoid soy or milk products for an hour or so afterwards, too. We normally take our hormones on an empty stomach, and wait an hour before eating, so that the food doesn't interfere with absorbing the hormones in our stomach.

Don't worry about the 'stage' with your cancer for now, Margaretta. As long as your cells will absorb the radioactive iodine, it doesn't really matter if it is stage 1, or stage 3 for us. The radioactive iodine normally will 'get' any of those three stages... the radiation in the iodine will keep killing bad thyroid cells for many months - 3-6 months at least - after the treatment.

Maybe join this group, too, Margaretta - but check the 'no email' option, because some days there are 200 or more posts there!
http://health.groups.yahoo.com/group/Thyca/

They also have meetings in many communities - or can maybe try to match you with a polish speaking volunteer, if that might help, too:
http://www.thyca.org/support.htm

I hope this helps a bit. Waiting until November for the treatment is a long time - it should be about 6 weeks between your last surgery and your treatment, if at all possible, and no more than 8 weeks... if it is going to be longer, insist that they test your TSH levels - perhaps they can get you in sooner than that.

All the best to you - I hope this makes sense, as I'm just heading for bed, so may have made a few mistakes ... big hugs sent your way.

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