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ESikon Offline OP
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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


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
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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.


Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
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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.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: May 2002
Posts: 2,152
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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


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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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


Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
Joined: Jun 2009
Posts: 440
ESikon Offline OP
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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



Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: May 2002
Posts: 2,152
Good question. Why can't your GP prescribe the meds? Mine does.

Take care,
Eileen



----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: Jun 2009
Posts: 440
ESikon Offline OP
Platinum Member (300+ posts)
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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


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
Joined: Mar 2008
Posts: 3,082
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Mar 2008
Posts: 3,082
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

Last edited by Charm2017; 06-11-2010 04:41 PM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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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.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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