I was able to get my labs from my visit with MDA last week. I just emailed my dr about this, it's still within MDA's normal range but explains alot of my symptoms.

Normal Ranges for MDA (TSH 0.50-5.50)/(T4 0.9-1.8)

Date TSH/T4
4/13/09--1.87/1.1 (at diagnosis)
7/30/09--0.82/0.8 (prior to radiation)
2/21/10--2.06/1.0
6/2/10--5.34/0.9

They have been checking my husbands thyroid every 3 months. They are finally getting the levels to normal, but it took them some time to get there.

My understanding is that a lower TSH is better. Not that familiar with the T4 test.

I've been on synthroid for a few years. The highest my TSH was 5.28 -- now it is below 2.0. I started with 25 mcg, then 50 mcg, and have been at 75 mcg for a while.

I go every 3 to 6 months for a blood test. I was having some other issues with my thyroid so I went to an endocrinologist for a while.

That's within the normal range but it isn't YOUR normal. If you are having symptoms, I'd get the doc to put you on synthroid. When I hit 4.+, I start falling asleep at the wheel and freezing to death and my normal is around 2.5. Now you know why that baseline TSH is so important.

Take care,
Eileen

My husband started out with 8.6, the last time we went it was down to 4.0 and he thought that was a good number. Maybe we need to talk to him a little further.
Pat

I just heard back from my oncologists nurse, she said she would be happy to see me and draw labs again. She has been noticing my tsh level going up but attributes alot of my fatigue to the treatment and the fact that I keep losing weight, what??? So I will be back into Houston in July so I gonna swing by and have them redrawn, I hate to wait another 3 months.

Oh and she also said that the dr stated I eventually will probably need medicine for my thyroid, so why am I waiting???LOL

Good question. Why can't your GP prescribe the meds? Mine does.

Take care,
Eileen

I have only seen my GP once before diagnosis, I never got sick or I was having babies. They rather I'd be seen by the doctors at MDA until they release me to my primary again. They could see me but then it would be a hassle since they don't really know me other than by paper. Makes it easier for them and me!LOL

ESikon
I held off posting since I didn't want to start a THYROID WARS or trigger a recurrence like I keep doing with the PEG WARS. I'm just back from a vacation that even though it had major challenges, left me mellow enough to refrain from my usual bombastic rant about otherwise GREAT Cancer Centers like MDA or the one I used, Georgetown U's Lombardi Cancer Center are still stuck back in the 20th Century about oral cancer patients and thyroid issues. Instead, I will just share my personal experience.
Before the Cancer, I had a TSH level of 1.68 with boundless engergy and NEVER feeling cold ever. While my CCC doctors were top notch on Cancer, for related issues like Thyroid - "not so much". I was not only extremely tired but also froze for two years, even in summer, and kept a winter coat on in air conditioned places yet I was constantly told: "Your TSH levels are normal" and I did not ask for the actual numbers or test results. Turns out however there is MAJOR controversy over what is the right TSH level with labs having a 5.5, a 4.5 even though endocrinologists who went to Medical school in the 21st Century consider 3.0 as the highest acceptable level.
I couldn't get the CCC doctors to understand that if before TX, I had a TSH of 1.6 and after TX it shot up to 4.3, it was not NORMAL for me (as Eileen advised you also) Now that I am "on the pill", I am finally warm again. Plus my energy is back.
My MO finally admitted that he had no independent basis to support or believe the 20th Century Labratory values and encouraged me to find an endocrinologist who had gone to medical school in the 21st century. She immediately started me on 25 mg of Levoxyl which brought my TSH down to 3.04 and my T4 to 1.1 . A month later she upped it to 50 mg and my TSH went down to 2.17 and my T4 to 0.9. Now I am on 75 mg and finally feel like I did before the Cancer.
I know the RO's all try and avoid the thryoid with radiation but my new endocrinologist's approach has worked wonders. I guess a non medical analogy would be if Lance Armstrong's doctors had told him that it was "within normal ranges" for him never to bike competitively. Don't believe it. Just get Thryoid pills as soon as possible. Plus it helps MAJOR with depression which is a classic hallmark of too high TSH (too high for you, not some old 20th century outdated cohort)
Review the posts of many others here to see how thyroid medication has made a major difference in their recovery.
The lab ranges are as meaningless to you individually as the survival rates IMO

Charm

Elizabeth,

I see you are the mother of three -- perhaps your OBGYN did a TSH on you. Mine did and that is how I found out my pre-treatment normal level.

Thanks everyone!

Charm- definately don't want to start any post wars.lol thanks for the info though.

Susan- I know my ob/gyn checked my tsh because I had complained to him I was tired all the time after baby #3 and he chalked it up to me just having to care for 3 small kiddos when the lab came back normal. I will have to give him a call and see if he could get me all my old tsh levels...thanks!

I'm so exhausted today and its only 8:30 in the morning, we have my husbands company picnic at sea world so I know I'm gonna be beat tonight, but I must do this for my kiddos!

Charm,
Thanks for your informative post on the thyroid - TSH / T4 issue.

I was told by one of my RO's that issues like this will not normally show up until a year or more after RT. I don't know what my baseline was, but I seem to randomly get cold spells.

I need to get up-to-speed on this since my thyroid test is now part of my physical so it is being monitored by my PCP. I am scheduled for the physical next month (lab a week before).

My pre physical PET/CT came back clean (about two years now since DX), but with some notation of tissue fibrosis?? (thickening or something?)in my throat near the thyroid. I was told my ENT has reviewed it and will explain it to me at our next scheduled appointment (also next month).

Also at my last RO visit, I was told this may be my last PET/CT... She said if it looks OK she would have the scan center set the archive up for future MRI overlays (does that mean I won't glow in the dark and set off the airport nuclear detectors anymore? ).

I'll join the fray. I finally got tired of being tired and cold with a "normal" TSH of 4.8 (2.0 pre-rads) so I got an appointment with an endocrinologist, who adjusted my synthroid dosage from 75 to 88 and eventually to 100mcg, which brought my TSH down to 2.2.

The difference in quality of life has been remarkable.
My grandchildren and my wife no longer recoil from my touch (no more hands of ice), I'm comfortable, not freezing all of the time, and my energy level has improved.

I would encourage you to see someone who deals with this issue professionally, an endocrinologist, and get it straightened out.

I owe my life to the Oncologists and staff, but this just isn't in their sweet spot. The attitude almost seems to be "We saved your life, what else do you want? We have sick people to see here". I want to feel good, is what I want!!

See a professional.

Chuck

ESikon

That's great that you will have a baseline TSH pre-cancer. I'm glad that Chuck added his testimonial

Fortunately, your pre cancer test will tell you what is the correct TSH level for you. You will probably have to go to an endocrinologist as most GPs and even CCC docs blindly adhere to the lab limits, but any decent endo will know that you want to be back where you were and help you.

Just last night, my wife added her version of Chuck's story as she commented that for the first time in three years, she could snuggle up to me and get warmed instead of chilled. It's a big deal for us and one reason I am going to focus on TSH levels more here on OCF.

Good luck
Charm
Charm

Don

You are always so informed and convincing that I hope you can set your CCC on the right road. I just got frustrated and took their advice to go to a newly minted endocrinologist who literally had gone to Medical school in the 21st century. My MO felt that the new grads were in tune with my belief that your TSH level should be the same before and after cancer, while the old 20th century CCC dictum was that even a 300% increase did not warrant any medicine as long as it was within "normal" range. Again, since even endocronologists cannot aqree whether the upper limit is 3.0 or 5.5, IMO that is not good medicine.

Charm

Don,

My thyroid crapped out 4 months post.

my husb is 5 weeks post and battling the chills also. Is it too soon to consult an endo doc?

Johnswife - time varies for people when the thyroid, starts to lose function, it has a lot to do with where the radiation was delivered, and for how long. While this is a simple blood test to evaluate the levels or hormones being produced, just food for thought, if he is still non strong pain meds or coming off them, they can produce some significant chills.

Johnswife - time varies for people when the thyroid, starts to lose function, it has a lot to do with where the radiation was delivered, and for how long. While this is a simple blood test to evaluate the levels or hormones being produced, just food for thought, if he is still non strong pain meds or coming off them, they can produce some significant chills.

Charm,
I did have a baseline pre-tx thyroid test and a follow-up about seven months post-tx, and I will have another in a few weeks, but I have never questioned these since I never had any cold spells until recently and they seem to come and go

Is there a normal variation in these TSH levels? Should I ask about a significant increase such as 2 to 4 from pre-tx, or what would you suggest?

My CCC Docs raised my Thyriod meds to 50mgs 6 months ago and that lowered my to a pre TX level of 2.2. MY thyroid started going bad about 1 year post Tx, my MO does throid blood tests every visit to see how it is doing and the tests started 2 months post Tx. Semper-Fi Bob

Don

One of the first axioms we learned in law school was in Torts
[quote]It never hurts to ask[/quote] The opinion of my endocrinologist is that a wide variation in pre and post cancer TSH level is a clear sign that you would benefit from treatment. She also thinks the lab ranges are outdated and wrong as does the American Association of Clinical Endocrinologists (AACE)and the National Academy of Clinical Biochemistry, part of the Academy of the American Association for Clinical Chemistry (AACC), and presented in their Laboratory Medicine Practice Guidelines for the Diagnosis and Monitoring of Thyroid Disease.
On the other hand, my CCC MO was equally adamant that as long as the post TX TSH level was within "normal" lab ranges, no treatment was necessary. As I mentioned, he is exceptionally dedicated and fair and he admitted upon cross examination that he had no way to judge who was right in this ongoing, eight-year dispute among thyroid experts. Since 2002, many endocrinologists believe that the range should be narrowed significantly, to 0.3 to 3.0 instead of the 20th century lab ranges still being used of the normal reference range is approximately 0.5 to 5.0. All my CCC doctors and my ENT agreed that they had no way to know which position on the lab ranges was right as this was just not their specialty.
All I know is that taking the thryoid medicine has made a world of difference for me. Another thanks I owe DavidCPA for his posting years ago about checking TSH levels and how the thyroid pills helped him
Charm