| Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | It was suggested I have my TSH levels checked. I logged onto my page at Johns Hopkins (why I didn't do it sooner....?) and found that my levels as of 6-7-13 were:
TSH 0.50-4.50 mcIU/mL 0.19
I also saw my red and white blood counts and hemoglobin were low as well.
RBC 4.50-5.90 M/cu mm 3.20 WBC 4.50-11.00 K/cu mm 3.14 Hemoglobin 13.9-16.3 g/dL 9.6
I've had a general lack of energy (fatigue), especially in the mornings and a feeling of cold even in the heat of the day. I have to wear a lined flannel shirt and sleep under extra blankets at night when my partner/caregiver is sweating.
I have blood work scheduled for August 9th and see my MO the about an hour afterwards. I'll address this as well as the pain med issues then as well as with my RO on August 6th.
From your experience, would this account for the side effects I'm describing?
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Feb 2013 Posts: 78 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Feb 2013 Posts: 78 | I had my TSH and free T4 checked again 21 days post treatment. My main symptom was being cold all the time and was tired. I was later told it was probably too early to check for thyroid damage but I think they indulged me anyway.
It is important to know the TSH and T4 free levels in reference to your baseline, pre treatment. TSH is the hormone that stimulates production of T4 by the thyroid. A high level of TSH can indicate hypothyroidism and vice versa. A low level of free T4 can indicate hypothyroidism as well.
My free T4 went down (1.04 to 0.81) but so did my TSH (2.63 to 0.58), when comparing pre treatment to 21 days post treatment, which is inconclusive. I haven't been tested again yet.
Do you know the pre treatment levels?
As for the blood tests, I'd think the low hemoglobin (as well as slightly low RBC count would contribute to fatigue. I had hemoglobin and RBC counts right around where you were and had some issues with fatigue, which have improved as my counts have rebounded. They told me I had (mild) anemia, caused by the chemo. It will take some time for the counts to improve. As of my last blood test (2.5 months out of treatment), hemoglobin and RBC count were still below my pre-treatment baseline and the standard range, but had improved. I was told it takes some time for the bone marrow to recover and produce RBCs and WBCs back to baseline levels.
Last edited by AndrewL; 07-28-2013 10:01 AM. Reason: typo
Andrew age 25
early 10/12 - enlarged lymph node area 01/13 SCC of L tonsil, L BOT, 2 L lymph nodes stage IVa, T2N2bM0, HPV+
2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT 4/13 TX finished 7/13 PET/CT - NED!
| | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | [quote=AndrewL]
Do you know the pre treatment levels?
[/quote]
No, but I'm sure they're on record at Johns Hopkins. I plan on asking when I go in August.
As of 6-7 my MO said my counts had improved so I would hope they're better now. However, I had/have an issue with gout which is due to my blood counts being messed up as per my MO. I'm still fairly early on in recovery so I'm sure some of these side effects I'm experiencing will improve.
Thanks for the response!
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | [quote]My main symptom was being cold all the time and was tired.[/quote]Did you get any satisfactory explanation for what caused this? From weeks 1-4 post, I was always freezing unless it was like 80 degrees+. Now, my body seems adjusted but I lost about 35 lbs and personally attributed to the loss of my permanent fat blanket. lol don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | Hey Foo,
The test results indicate I'd be more hyper than hypo concerning my thyroid. I'm definitely not hyper, that's for sure! I lost a total of 60 pounds from last Fall. I lost a lot of fat and muscle. That combined with neuropathy in my feet from the chemo and cardio vascular disease doesn't help.
I'll be running it by my team when I see them the 6th and 9th of August but I think that's what's going on from the responses I'm getting. Now where's my flannel shirt? Brrrr!
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Usually Thyroid damage from the radiation takes a few months post Tx to show up but do keep on top of it. Mine showed up (crapped out) 4 months post and I take a single pill a day. Problem is the NORMAL range for TSH testing is extremely wide and while your levels may fall within this range it may not be what's normal for you and that's why we tell everyone coming to this site pre Tx to get and record their pre Tx TSH. Certainly none of us are Endocrinologists and we don't profess to know their job so IMO they are the ones you need to consult with.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | The symptoms you describe, tiredness, being cold, can be from the anemia, low hemaglobin. I have chronic anemia, hemaglobin ranges from 7.5 to 10. I'm never over that. I wear long pants, shirt, socks all day, even to bed from being cold. It's from treatment, which destroys RBC faster then they can be replaced, plus the compromised bone marrow where they are produced, doesn't make enough. . RBC picks up oxygen, hamaglobin, in the lungs, but there are not enough being made to attach, and be distributed in the body. Same thing with WBC. RBC have a life cycle of 90-120 days, and are continuously replaced by the body. If my hemoglobin gets lower than 9, I could get a Lance Armstrong shot lol, epogen or procrit, but during treatment, with active cancer, it's not recommended or used by some institutions, and if given when hemgaglobin is high, it runs the risk of speeding up cancer, increasing the size of tumor. If it gets under 8 or 7, I've been down to 6, I would get a blood transfusion. You can really get a transfusion if its under 10, depending on symptoms, hospital policy, doctor, but they also have their own risks. One is an increase of cancer recurrences, and seen a journal article of an increased HNC recurrence risk from 30% with no transfusion to 71% with one. As such, my hemaglobin gets up to 10 from one of the therapies, and goes down every three months, and need a shot or blood transfusion, and the same cycle continues, but they do help with quality of life.
Check your creatinine levels too, which measure your kidney function. Compromised kidneys can also cause anemia, low hemaglobin, plus others ailments, conditions.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | What a mess - Cancer sucks. The potential side effects from the toxicity and bombardment of gamma rays seems a continual learning process. We all make the brutal treatments with rare exception, then face this kaleidoscope of minor to major "ailments' post treatment.
I slid through the gauntlet of treatment rather unscathed yet during the 7 weeks post I have experienced all sorts of minor conditions varying from sensitive teeth (hot and cold), ulcers and sores, hard to swallow, cold all the time (the extremes of that seem now history), aches and pains in various places, very sensitive scalp and ears and upper body surface/skin, etc. Tongue is really sensitive to toothpaste and just about any seasonings.
Mind you, I'm surely not complaining at all; the alternative was far worse but just how harsh treatment is continues to offer new surprises. Many say I look so great but inside there are many body as Paul points out that are just messed up. have a good day, don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | |
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