garlandkat's Cancer Blog
August 31, 2010
For 8+ years prior to cancer diagnosis I had a laundry list of ailments and symptoms that were attempted by various doctors to diagnosis and treat, usually with no long term relief. During that course of time there were multiple blood workups, always including my thyroid and the numbers were always in the “normal” ranges.
Now, 15 months into taking thyroid replacement medication my lab results indicate that I am HYPER-thyroid. My body says that I am HYPO-thyroid. The majority of pre-cancer symptoms have returned, some not as severe as they were previously but they are back. The main thing to consider, when I first started taking thyroid meds all of these symptoms disappeared within 3 months! Part of this could be attributed to the change in diet because of the LID - but for the first time in years I was growing fingernails, eyebrows and my joints did not hurt. I was losing weight and I felt good.
I had this discussion with my endo last Wednesday. He agreed that I could try taking the natural version of thyroid medicine. Upon the return of my labs I received the phone call that I have every indication of being HYPER-thyroid so he is reducing my Synthroid dose!
WHAT THE HELL? I called the nurse back, said this was a mistake, that because of our conversation he was going to change the medication. She argued with me, I argued back, she finally said that she would check with him and call me back. Guess what? She didn’t! So, I did! I called back yesterday, giving her the benefit of an extra half work day. My call was answered by one of the more experienced staff members that had actually coached the nurse on Friday during the first argument. This nurse finally relented and agreed to pull my chart and have the endo review his notes from my visit.Well – I WON! He was basing my new Synthroid dose strictly from the single piece of paper in his hand – he had not referenced my chart at all when telling her what to call in. She had not double checked the chart on Friday!
As a I result – my new prescription for Amour Thyroid – which is a natural production (made from pig) was called in and I started it today. The difference is – Amour contains both T3 and T4 hormone – Synthroid only has T4 and relies on your body to produce the necessary T3. IF your body cannot produce this you can have hypo symptoms.
It is my hope – that my body is not capable of producing the T3 and what I will now receive will do the job in making me “normal”. Directly after surgery I received Cytomel which is strictly T3. After RAI I received a very high dose of Synthroid which could be the reason why I felt good for 3 months, after that first high prescription my dose has been decreased, thus not enough T3.
The reason for my extensive explanation – IF you have hypo symptoms and your blood work does not show you are hypo – don’t believe everything that you read. I very well could be wrong with all of this, and I will keep you posted.
With my first dose today I am keeping an extensive diary documenting my weight, blood pressure, pulse rate, food intake and activity, plus any symptoms good or bad that I’m feeling. This way when I go back in 2 months for my checkup I will have solid documentation for the medicine change – whether that is good or bad.
Happy Trails,
-Kathy
I am a strong woman like you and you give me the validation for every time I question and possibly “annoy” someone because I’m not as dumb as they expect me to be.
Awesome Kat!
I have a feeling everything is comin’ up diamonds and white gold for you.
I wish you love and peace.
xoxo,
Debbie
Posted on It is a shame that we have to fight for our needs when the medical team should be trained to do the fight for us. Glad you are on top of things and that you won this battle. Hopefully your medical team will kick in gear and pick up that battle for you. It can be very wearying. Job well done! Gail
Kathy – I feel weary just reading about that mini-battle. Congratulations on persevering and putting on the pressure necessary to get the right outcome . . . of course it shouldn’t be necessary but . . . hoping that this new medication sees you feeling fit and that you will be rewarded for your assertiveness with renewed health and vigour.
with love, janet
Posted on Good for you Kathy – take charge of your body and fight like a girl to beat this! There is a LOT of scary stuff on the internet and it almost makes you want to stop reading…but knowledge is POWER!
Posted on Fabulous, Kathy; really impressive. Doctors like numbers, and often take those over what patients actually tell them. Please continue to post what happens with the Armour Thyroid, how you feel, if the labs change. You have given me highly useful info for discussion with my endo after the next round of blood draws in four or five weeks. Thank you!
Be well, and feel well.
Andrea
Posted on Congrats on being a strong, fierce advocate for yourself! Hope you’re feeling better soon; this little victory should help! :-)
Del
Posted on You are a great example and reminder for the rest of us. Good job and I will be interested in hearing all about success with the new hormone. Eventually, I’m going to have to find out if my mass in the thyroid is lymphoma or a thyroid cancer – just right now it is all lymphoma all the time.
Posted on August 25, 2010
I had my 6 month checkup today. . . Went first for the sonogram on my neck. The tech explained that she was looking for any signs of thyroid that might be leftover from my surgery last year and also to see if I have an abnormal lymph nodes. The results were ready when I had my appointment with my endo an hour later – and everything is all clear. He said it was the best report I could get.
I asked if the sonogram will be repeated in the future and he said that it depends on my bloodwork and if I have any symptoms come up. So – this is not a regular test from now on, just as needed. YAHOO! (I typed in all of that for other newbies that might have this come up and you wonder why!)
Now for the lead in to the question.
I have had numerous, troublesome hypothyroid symptoms come back over the past several months. I made a laundry list of the ones that are back, and a shorter list of the ones that have not – and the ones that are sort of in the middle. I have read that Synthroid only provides us with T4 and that is some cases it is necessary to also provide the T3 hormone replacement – and this is done my using a natural thyroid medication.
The questions. . . Are any of you thyroid survivors on Amour or one of the other natural brand drugs? If so, did you ever take one of the synthetic drugs and this is why you changed?
Looking forward to getting some input here. I have been on Synthroid since my RAI treatment. I took really high doses, but have been on 88mcg now for nine months. I think I’m going to try Amour to see if the hypo symptoms can be taken away. I now have to wait for the bloodwork results before my endo will make the final decision to change. I’ll let you know what happens!
-Kathy
Hi Kathy,
Is Armour thyroid available again? It was taken off the market for a good couple of years. The controversy seemed to be political: FDA v. natural product.
What is the level your dr. wants your TSH? My endo wants .1 despite my advanced cancer, because I also have osteoporosis. She just decreased my Synthroid to 75 mcg. Since Dec. I’ve been on 125 mcg—> 100 mcg—> 88 mcg—75 mcg. My TSH on 88 mcg was .05. I believe that I felt better with my own, personal thyroid. She said that I can try some Cytomel (T3) with Synthroid once my TSH is where she wants it.
While Synthroid is only T4, T3 is actually produced by T4. That’s why Synthroid is only T4 and Cytomel is only T3. But I wonder if it’s really possible for drugs to take the place of an entire organ. The thyroid makes constant, minute adjustments of its hormone output throughout the day (and night). We take one pill in the morning. What do you think?
I’m really interested in the symptoms you have been experiencing. Can you fill in the details?
My endo uses the same protocol for follow-up ultrasound as your doc. She said that blood work is a better indicator for those of us who have finished treatment and have had one negative follow-up ultrasound.
Hope you feel better. This tinkering with meds can get frustrating.
Be well.
Andrea
Hi Andrea,
I was never very good in science, chemistry or math and trying to understand and comprehend exactly how all of the T3 - T4 – TSH works, along with the rest of the adrenal and hormone system is really overwhelming. . . My understanding (which may not be exactly correct) – Synthroid is T4 - When you take T4 your body is suppose to produce adequate T3.
Here comes the tricky part. For 8-9 years PRIOR to being diagnosed and treated for cancer I had so many “ailments” that I would go to the doctor for, would receive “treatments” which might cover the symptoms for a while – but whatever the problem was – it would come back. During this period of time various labs were done, including several thyroid panels – and they would always be normal – so this was never looked at. Examples: I have had constant stuffy pressure in my ears, plus fluttering and ringing – diagnosis: dysfunctional estachion tubes and tinitis. Nothing could be done to get rid of it. Carpal tunnel syndrome, with radiating pain to the elbow and shoulder. Tested, confirmed and was told surgery was the only “cure” which I declined. I wore braces, took supplements with no real relief. Then the pain spread to all of my joints. Went for arthritis screenings, docs, all labs came back normal. Referred to a pain management doc – he put me on pain meds so I could sleep, and 8 weeks of physical therapy. 5 weeks into PT I was asked by the therapist, what is your pain level? I told her 7 (out of 10). She asked if I had done my exercises over the weekend? Yes, and I had walked both days. She released me because she said PT was not doing any good, I could continue the exercises on my own. These are the main three – but I also could not lose weight, I had dark circles under my eyes, my skin was dry as was my hair, my fingernails either had ridges or were peeling – I could not grow either toenails or fingernails. The outer portion of my eyebrows had disappeared. At the time of diagnosis I was napping 1.5 to 2 hours everyday as I could not stay awake for a full normal day.
Then comes the cancer diagnosis, surgery, Cytomel, LID, treatment and Synthroid. My initial dose was 125mcg which I took for six weeks, then it was decreased to 100mcg, then to 88mcg which is where I am now, and I have taken this dosage for nine months. When I first started the thyroid meds and after recovery from surgery and treatment all of the above symptoms disappeared and I felt really good. I had a conversation with my endo, “Is it possible to be hypothyroid and have labs come back normal. Can a normal panel not be “normal” for some individuals?” His answer was yes. So, full of energy, growing nails and eyebrows, losing weight and not in ANY pain – it was all good.
I noticed with the first 90 script of 88mcg my energy level started to fall, I gained back a couple of pounds. Now 9 months into this doseage I have the following: Constant headache, itchy inner ears with the fluttering and ringing, temperature sensitivity – I get cold very easy, my hands, feet and butt are cold to the touch. BUT since I’m 50ish I also have the hot flashes mixed in. Low energy, feel lethargic and can nap again at any time, my eyebrows are once again disappearing and my hair is thinning. I’m moody to the crying end. . . I cry at everything! Tightness and hoarseness of my throat. Once in a while I have the carpal tunnel symptoms, but not on a regular daily basis.
Symptoms that are gone since treatment and have not returned: Dark circles under my eyes, dry skin, peeling fingernails, but the toenails aren’t so good now, and thank goodness, no joint pain.
This is the laundry list that I presented to the endo today. He said, “Those symptoms could be from a number of different things.” My reply – “Yes, but I had them all before cancer then they were gone with Cytomel & higher doses of Synthroid and now they are back.”
So, the thinking – from him and what I have read, I may not be generating the T3 to make me feel good and aleviate the hypo symptoms. In his words, it won’t hurt anything to try, you can always go back to the Synthroid. Then the next option would be to combine the Synthroid and Cytomel together.
Whew! With all of that said, I have read that Amour is now available again, but it is formulated different than it was before the FDA stepped in. Most recommendations are to go with one of other natural thyroid meds – but they are hard to obtain in the U.S.
Now I wait for the labs to come back – as he wants to see where all of the levels are before he makes the final decision to let me try the Armour – I will let you know how that all comes out.
I’m not frustrated with the tinkering of meds – I just wanna feel like I did 10-11 months ago.
Thanks, Kathy
Posted on Hi Kathy,
Wow—you have really been through the wringer. From what I have read, all the symptoms you’re talking about indicate hypo. I am not a scientist either. I do fine at the “what” but not the “how.” In other words, I know that T3 is produced by T4, but how that actually happens—the physiological process—is more technical than I know. I’ve asked a few questions of the anatomy & physiology teacher at my school and he has been helpful.
Seems to me you should be able to feel like you did 10-11 months ago. You gave me some important info, too—that normal labs might not be normal for everyone. As my Synthroid dose has been cut, and then cut more, I am having problems with constipation,which I didn’t when I was still the owner of a thyroid. That was also my worst problem when I was hypo prior to RAI. I had a discussion with my endo, and she said that if I am constipated, it is due to another cause; I am taking too much Synthroid for constipation.
She was more amenable when I said that I am also having more trouble concentrating and controlling my weight. That’s why she agreed to a trial of Cytomel added to Synthroid once my TSH is a little higher. I really am wondering if I will ever be able to feel the way I did before surgery.
I’m glad to know that Armour thyroid is back. I hadn’t followed the issue.
Do let me know what happens with your blood work and the next decisions about meds. Thanks. I get the best info from this blog. There are too many wacky people on the bulletin boards. I gave up on those.
Later :)
Andrea
Congratulations on getting the all clear! That’s fantastic news. Here’s to many, many more all clears in the future!
:)
Jill
Posted on Am so happy to hear about your sonogram results. With having a different type of cancer, I can’t help you with your question, but am so glad you have the friends on here that can provide the info you seek.
Prayers and puches continue to come your way and appreciate your friendship!
Thanks for your support - 
