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Energy Levels and swallowing problems HELP Me Please..

LMedlin
Posts: 21
Joined: May 2003

I have a question and am hoping someone can help. In 2003 I was diagnosed with thyroid cancer. I had complete removal of my thyroid as well as several lymph nodes and neck muscles due to the size of the growth. Also my parathyroid was taken out cut up and put back into my neck in the hopes that it may decide to work again. I nearly died due to my body needing calcium after the surgery. I have been on high dosages of calcium since the surgery. I was doing ok... So much so that two year I actually started losing weight something that I had not done in many years. I remarried last year and thought all was going to be ok. At the beginning of last year I began having problems swallowing. No one could explain it but the problem is there. My cancer doctor sent me to another doctor saying that my blood work was fine and he did not think the cancer was back. I had my esophagus stretched hoping to ease the problem in October of last year. It has not helped. Now the swallowing is an issue and I am having problems with energy levels. My biggest fear is the energy levels. They have dropped to the point I am sleeping more and taking naps during the day. I had blood work done this week and am still waiting on results. I am just scared something more serious is going on. Has anyone had any similar experiences? The losing of energy like this, I am just so tired all the time it is like I just had my surgery for the cancer again. Please help. I am just so afraid of recurrence. I am so afraid of going through this again. My husband doesn’t know how bad the energy levels have gotten. I can’t tell him. He works so hard and travels all the time due to his job. We just got married last year and I don’t want to have to tell him that he married a person that he has to take care of instead of someone that will take care of him. I know it is suppose to be a partnership. I just don’t want to be a burden to him. Please advise.. Thank you for your time. Lisa

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

Hi, Lisa - I'm sorry you are going through this. I haven't experienced the things that are happening to you, but would like to help, if I can.

Dysphagia is a concern, and that's the medical name for these types of swallowing difficulties - there is more information on this here:
http://www.nidcd.nih.gov/health/voice/dysph.asp

What type of follow up has your 'cancer doctor' done for your thyroid cancer?

Are you seeing an endocrinologist? You should be - if your cancer doctor is not an endo, please ask to be referred to one - even if it means being sent out of town to a different city.... and please also be aware that some endo's specialize in diabetes, or growth hormone issues - there are others that specialize in thyroid cancer - and you definitely want to see one of thyroid cancer specialists. You could try searching on this website:
http://www.thyroid-cancer.net/resources/findaspec.php3

As far as the follow up question, has your doctor done hypo - off your hormones - (or thyrogen stimulated) thyrogloblulin levels and I-131 scans?

Have they done a very, very thorough ultrasound on your neck every year? This ultrasound needs to scan all areas between your collar bone and your ears.

All three of these tests are important to watch for recurrence - but the most important sometimes is the ultrasound... if thyroid cancer 'de-differentiates', or the cells type change to a more aggressive form of thyroid cancer, sometimes it will not show an increase in thyroglobulin levels, and will not show up on the radioactive iodine scans anymore.

This happens because as the tissue changes, it becomes less like 'normal' thyroid tissues - so it doesn't 'suck up' the radioactive iodine like well differentiated cells will.

It is good that you have had your blood work done, because having a very low TSH can cause this exhausted feeling you speak of - or having too high of a TSH can also cause it. Weight loss can also be caused by a very low TSH level.

"Suppression" - meaning taking enough thyroid hormones to keep your TSH low - is a very important part of your ongoing cancer treatment, too.

Your TSH should be no higher than .50 (that's point 50, so half of 1.0), and with the extent of the cancer at your first surgery, most specialists would want to see your TSH even lower - some may want it as low as .01, and no higher than .10 - this article is one of many that outlines the importance of keeping your TSH low, to help prevent a recurrence:
http://www.springerlink.com/content/g513874h7257t1m7/

Please ask your doctor to tell you your TSH levels, and if you don't understand what they mean, post a new message here, and we'll help you with them.

Again, either a very low, or a high TSH can cause energy level problems, and a very low TSH can cause weight loss - but to prevent your cancer from returning, it does need to be low... there are drugs (ie beta blockers) that can help with some of of the symptoms of having a very low TSH, though, if that is what they find.

I do know that 'exhausted' feeling from having a very low TSH - when mine was at .04 it felt like I could barely walk across the room without taking a rest.

Lisa, I know this is all very hard, and very upsetting to you - but you do need to talk to your husband about all these things.

He would likely be very, very upset and hurt if he felt you were keeping important things from him, particularly worries as serious as these... marriage is about sharing our good times, and our bad times, too.

It is likely he suspects there is something wrong, too, and may think there is an emotional problem with your marriage rather than you not feeling well... please try to be honest with him.

It will help you both in the long run - in the meantime, he is likely guessing at what is going on with you. You do need to share your feelings and physical symptoms, as well as your concerns.

I know you don't want to 'scare' him - we've all felt like that at one point or another, but marriage is all about sharing those feelings with your partner. Again, if you leave it too long, he will likely feel hurt that you didn't confide in him already.

There is a possibility that you are dealing with something like post surgical scar tissue, that may be causing this swallowing problem, but it does definitely need to be thoroughly investigated; if it is not at all related to your thyroid cancer, then they STILL need to find out what is causing this and help you with it. Please don't take 'oh, it will be fine' as an answer from anyone - insist that the doctors follow up and find out what is going on here... or find a doctor who will. All the best to you.

LMedlin
Posts: 21
Joined: May 2003

Rustifox,
Thank you for replying. Sorry it has taken me so long to get back on. My husband has been out of work so I am working more hours and trying to make sure all stays well with the family. I do see and Endocrinologist. He is usually very good. I will call tomorrow and as for my TSH levels. Thank you for the advice.

He has not done the off hormones test. It is usually throgen stiulated. I have not had one in over a year and there has not been an ultrasound in about that long also.

For the swallowing. I went and saw a surgeon in October of last year and he stretched my esophagus thinking that maybe that was the problem. But is has not seemed to work. I will have to give him a call and see if he can see me again to figure this out. If it is just scar tissue there is no way I can go through the surgery to have it fixed. I cant take a chance on being out of work for an extended period of time. I am the only income right now and no idea how long that is going to go on.

I did try to explain to my husband that I was tired but I am not sure he understands that it could be very serious. We were not married until last year and he was not around when I got sick the first time. He did not see how bad it got. How my energy levels dropped or any of that.

But you are correct I really dont want to scare him or have him worried about me when he is on the job. His job is very dangerous and if he is worrying about me he might get hurt. Since he is here I will try again to talk to him. Maybe he will see it. I dont know. Thanks so much for being here. It is good to have someone to talk to. I really appreciate it. Thanks for the website. I will check them out. Have a great night. Lisa

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