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Old 02-10-2005, 01:12 PM   #1
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My Dr. wants me to stay hyperthyroid...Is this dangerous?

I was dx'd with thyroid cancer in 03 and I'm currently taking 125mcg synthroid for TSH suppression. My Endo feels I'm at high risk for recurrence and wants to keep my TSH as low as possible. My last tsh was 0.08. I have several hyper symptoms including: anxiety, feeling jittery, shortness of breath, and a fast heart rate. I've also started to lose weight(5 lbs). My Dr. wants me to start taking a beta blocker again for my heart rate, but he says I need to stay on this dose of synthroid to keep my TSH suppressed. My Radiation Oncologist seems to agree with him.

My question is....Isn't it dangerous to be hyperthyroid over a long period of time. I can deal with my symptoms, but I'm worried about the long term effects this might have. I don't really trust what my Dr. is telling me.

I would appreciate any input.
Thanks, Hilery

Last edited by hilery79; 02-10-2005 at 01:12 PM.

 
Old 02-10-2005, 01:57 PM   #2
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

That's a tough call. How long are you supposed to stay hyper? I've never heard of such a thing. If he was that concerned, wouldnt you normally get an ablating dose of RAI to wipe out any remaining cells? I don't know about that. Where's the quality of life being hyper all the time?

 
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Old 02-10-2005, 02:11 PM   #3
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

Thanks for your reply.

Yes, I've had 2 RAI treatments to kill the residual thyroid tissue in my neck. One of the reasons my Endo is concerned is because my thyroglobulin # is up. My family thinks it's time to get some other opinions. I'm just not sure what to do at this point.

Also, my Endo has said that he feels my symptoms are due to an anxiety disorder...not my thyroid hormone levels. Yes, my symptoms are problably caused by anxiety, but I believe that my anxiety problems are due to being hyperthyroid.

Last edited by hilery79; 02-10-2005 at 02:16 PM.

 
Old 02-10-2005, 03:03 PM   #4
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

By no means do I have experience in this and I am sure someone else will be around. But for cancer patients it's best to keep thyroid supressed.

We need to see your free t3 and free t4 to see where you are REALLY at.

April

 
Old 02-10-2005, 03:16 PM   #5
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

I can't tell you how many times I have requested my Endo to check my free T3 and T4. He simply says it isn't necessary...he says the goal of my treatment is to suppress my tsh. My TSH was too high on 112mcg(synthroid) and alternating between 112 and 125...so I'm stuck with 125mcg. He could care less about how I feel. This guy is supposed to be one of the best Endo's in my area.

 
Old 02-10-2005, 03:47 PM   #6
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

From my own experience, my endocrinologist and radiation oncologist have the same goal... to keep me hyperthyroid. I had thyroid cancer in 2001 (with total thyroidectomy and radioactive iodine), had a recurrence in 2003 (treated again with radioactive iodine), another one in 2004 (radioactive iodine again) and my thyroglobulin is elevated AGAIN!!

The more they suppress the TSH, the less likely the thyroid tissue (cancerous or not) is to grow. Fortunately, I don't have many hyper symptoms except for some anxiety and unfortunately, I have some tissue that is still growing.

Good luck. It is frustrating. From what I understand, you will probably be kept close to hyperactive forever. That is what my doctor has indicated to me. You wouldn't ever want that tissue growing in case it does have those nasty cancer cells attached to it.

Good luck!

Dianne

 
Old 02-10-2005, 04:03 PM   #7
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

Hi Dianne,

Thanks for your reply. I'm sorry you're going through this, too.

If you don't mind me asking...were your recurrences confined to your neck area? My Radiation Onc. isn't sure why my thyroglobulin is elevated. I just had a 2nd RAI treatment in August(due to my scan showing tissue in my neck) and he assured me that this would take care of the remaining tissue. It doesn't make sense to me that my thyroglobulin has gone up.

Best wishes,
Hilery

Last edited by hilery79; 02-10-2005 at 04:04 PM.

 
Old 02-10-2005, 04:27 PM   #8
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

Well that's just rediculous. You need to know your numbers. There's no question about that. I would certainly find another doctor for a second opinion. And yes, keeping you hyper on top of worrying about cancer, can certainly cause your anxiety problems. Hyper does not just include physical symptoms...its a state of mind...confused, jumbling thoughts, panick under otherwise normal situations, unlogical reactions to otherwise normal stimulus.....its all hyper.

Look up doctor ken woliner, Boca, FL on the net. He'll get you the tests you need and figure out what's going on.

 
Old 02-10-2005, 05:41 PM   #9
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

This kinda thing makes me so mad. I'm sorry you are going through this. I too had the same line fed to me because I had CA. What you need to do is get those frees done. Despite what the conventions are...I don't believe you are getting the best care. I would suggest a complete change of doc, testing, and protocol.

Good luck...I know how confusing this all is. I don't believe you need to be hyper for the rest of your life.

 
Old 02-10-2005, 07:43 PM   #10
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

I to had cancer in 02 ,My dr. keeps my TSH at 0.01 I feel fine ( but I am also taking wonderful nutrition daily) and that keeps me feeling good..I know its a long road. One I wish I didn't have to travel... Good Luck and hope you feel well soon...

 
Old 02-11-2005, 06:19 AM   #11
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

Just a small question here.
Have you tried adding some T3? I know that a small amount of T3 supresses TSH very much without making you hyperthyroid.
Actually I have wondered why docs don't subscribe it to patients with thyroid cancer, any clues?

 
Old 02-11-2005, 07:37 AM   #12
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

Hi Hil, It is VERY important that you keep your TSH supressed below .10 or you will be more apt to have a reoccurance of the cancer. You need to have your T4 level checked though and maybe the Endo could lower your synthroid and add some armour. Please call and ask him/her today. I am a thyroid cancer patient also, and my PCP ignored the fact that my TSH needed to be that low, and now am waiting for a Whole Body Scan for a probable reoccurance. I have read and heard though that lowering the synthroid and adding armour gets rid of the pesky hyper symptoms. If he will not go for the armour try this, it works for me. Cut your synthroid in half (they break easily) take half in the morning and half about 2:00pm ( not any later, as it may keep you awake) I did this for one week the hyper symptoms went away and then I was able to take them whole again. When ever the hyper symptoms reappear I just go back to cutting them in half again for a while. You also need to be monitered to see just what the TSH and Free T3 and Free T4 levels are at least every 3 months. Educate yourself on the symptoms and causes of Thyroid Storm, (look up in a search engine) Fever is a big symptom so keep a eye on your temperature. Thyroid Storm is very rare but take it from someone who has had one. You don't want to have one. This can be brought on by illness, as in the flu, diabetes, and a couple of other diseases. Hope they figure out the Tg levels for you. Did they check antibodies? This can and will effect Tg. and make the readings WRONG and useless. Be sure also that you DO NOT take your thyroid meds with vitamins, iron or estrogen. To be safe I do not take mine with any other drugs. If you have any other questions I have a good source of information at my disposal and would be glad to help. I will need to know however: What kind of thyroid cancer you had. You also might try this: Call your Endo's office and tell them you need all hard copies of all of your labs (for your records) since he/she has been seeing you. You need not speak with the Endo about this just his/her office or records people. Fill out the approriate forms and send them back. They are REQUIRED by law to send them to you (most states they can charge you) Also while you are at it get copies of any post op reports from the hospital who did your surgery (you will need biopsy results and labs or better yet an abstract of care). I have found that a patient who is pro-active and informed will get the best treatment and tests available. These are YOUR RECORDS, they belong to YOU. You will need them later especially if you move or change doctors. My advice is not to wait to get them either, things happen and they can get lost or eventually thrown away. Every time you go to Endo and they do new tests GET A COPY.

Last edited by Benzi; 02-11-2005 at 08:07 AM. Reason: add

 
Old 02-11-2005, 12:52 PM   #13
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Wink Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

Unn:

A a CA patient I ran into the same problem. I had doctor hopped post-surgery. Some folks in other thyroid pages...were all freaking out over my taking Armour. I investigated it...but none of them could provide a clinical basis, or data for their EXTREME rigidness against it. I bent over backwards to help them come up with a good logical medically sound explaination...believe me. All I got were the same non-answers.

So, I went on digging for the real story:

The only thing I was able to unconver is that the big synthetic company that helped design the dignostic tests we all take, have us all chasing our tails. They get doctors to become overly dependant on them...to confirm the basis for us taking that synthetic med. Thats just good business in their world.

They say....Armour cannot keep the TSH stable....and that since its full of impurities, it can't provide suitable protection against cancer reccurence. Part of the reason why pure t4 suppresses the TSH so well is that it also hits on the pituitary. That means you (many folks) are left clinically hypo/hypo, even though your bloods indicate otherwise. When doctors don't know why folks were still complaining of an array of symptoms, they pull out the latest made-up diseases. We have all heard them: Chronic Fatigue Syndrome, and Fibromyalgia. Oh...and my all time favorite, perfectly executed against women..."Its all in your head."

That is part of the reason why patients like me...have to fight tooth and nail to even get the T3Free blood test taken. Doctors have been told by those big Synthetic companies that t3, in its direct form is useless to the cells in the body. Pretty bold considering they don't have a shred of evidence to support that. In fact...the latest nuero-science evidence is screaming just the opposite.

Unn, you are correct. Armour and or t3 does a great job suppressing TSH and does it within a few days compared to a few months for t4. Armour really should be the drug of choice for the cancer patient for that reason alone. But, what makes it especially attractive is that it contains many vital hormones and some minerals the body ABSOLUTELY needs in order to feel and ACTUALLY be healthy. To deprive a thryoidless patient of those hormones is sooooooo against the hypocratic oath in my opinion.

Yes...the TSH can be suppressed...very much so while taking Armour, without feeling AT all hyper. My TSH is non existent...and I'm not hyper at all (I don't believe).....and I guarantee you this...my t3 and t4 are well up in the range.

Regardless if whatever protocol you decide on...its best to feel a bit in control of the decision making. I would find a doc..you can explore these things with.

Sorry...I got carried away again. I'm feeling good today


~S

PS: Just so you know, where I'm coing from I take a combo of synthroid and armour.

Last edited by softcrush; 02-12-2005 at 02:13 PM. Reason: typos

 
Old 02-11-2005, 06:50 PM   #14
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

Thank you ALL so much for all of the great information.

I have asked 3 different Dr.'s about Armour and all of them were against it. My Radiation Onc. told me that they couldn't accurately monitor my tsh if I were to take Armour?? I tried adding Cytomel several months ago and it really made my heart rate sky rocket. I'm leaning towards finding both a new Endo and Radiation Onc. I talked to my Rad Onc's nurse today to let her know my symptoms are getting worse. She told me she would talk to the Dr. and get back to me on Monday, but she didn't think he would want me to change my dose. Then, she wanted to set up my next scan in August and told me to "be prepared" for another full treatment. She said he had written in my records that I would likely need a 3rd round of RAI. What!??? The day I had my 2nd treatment he told me he was sure this would take care of it.

Benzi-
I had Follicular Carcinoma. The exact dx was minimally invasive follicular carcinoma...2.2cm...with capsular and vascular invasion. I do have my records from my surgeries and the final path report from Mayo's, but I need to get copies of all of my labs, scans and treatments since then. I will try your suggestion and take half of my synthroid in the morning and half in the afternoon. Anything to lessen these hyper symptoms! Yesterday I started having more palps and fluttering sensations in my chest. Any strange heart sensations always make me nervous.

Thanks again to all of you! You guys are always so helpful!!
Have a good weekend,
Hilery

 
Old 02-12-2005, 06:05 AM   #15
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Re: My Dr. wants me to stay hyperthyroid...Is this dangerous?

Softcrush,
thanks for a very thorough explanation, it's nice when someone gets carried away here

Thankfully I'm "only" suffering from Hashimoto's so I do not have to worry that much about my TSH creeping up .1 or not, but with my dosage of 60 mg Armour and 50 mcrgr Levaxin (Synthetic T4) my TSH has remained stable at 0.03 for the last couple of months. That was why I was wondering if T3 might help in suppressing TSH.

Hilery, did you cut down on the Synthroid when you added the Cytomel?

 
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