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#1 KeepOnGoing

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Posted 30 August 2014 - 04:57 PM

It's 2 years since I had TT due to thyroid cancer.

 

In that time I have put on 10kg, lost most of my fitness (I used to run half marathons, now I can scarcely walk 3 miles) and struggled through the day.

 

Now it is time to fight back.

 

I've given up waiting to feel like my old self. If this is my new self, I'm just going to have to get used to it and get on with it. My levels are "fine" (though I'm still fighting that one...)

 

Which is all very well, but has anyone got any suggestions / ideas as to how to go about this without ending up feeling even worse? I've been having a riding lesson each week and I want to be able to do more than 5 (tiny!) jumps before needing a lie down! I've been doing a bit of gentle swimming and walking but that is all. I have no strength - and a spare tyre!

 

All ideas / suggestions for doing this without a thyroid would be gratefully received.

 

Many thanks

 

 



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#2 joplin1975

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Posted 30 August 2014 - 07:05 PM

Aw, dang, I'm sorry you still feel bad!

What do your labs look like?

There's no reason you should feel this bad. When my labs were off, I couldn't do more than four or five jumps either. Three weeks ago, I was at a show and rode four different horses so there is hope...I just suspect your doctors aren't properly medicating you.
Papillary cancer with lymph node involvement
Total Thyroidectomy 8/29/11
TSH 71.17 on 9/14/11
RAI 100mci 9/23/11
Starting point for replacement meds: 50 mcgs of Synthroid, TSH 121.88 on 11/8/11; 100 mcgs of Synthroid, TSH 43.21 on 12/9/11; 137 mcgs of Synthroid, TSH 7.88 on 1/11/12; TSH 8.38 on 2/9/12, 150 mcgs of Synthroid, TSH 2.81 on 3/27/12, TSH 0.54 on 5/8/12, TSH 0.78 on 8/8/12, TSH 0.39 on 12/20/12, TSH 0.24 on 3/5/13, TSH 0.33 on 4/15/14, TSH .12 on 3/10/15, TSH 0.21 on 9/15/2016, TSH .12 on 2/17/17.

#3 Andros

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Posted 30 August 2014 - 07:39 PM

Understanding the Thyroid: Why You Should Check Your Free T3
http://breakingmuscle.com/health-medicine/understanding-thyroid-why-you-should-check-your-free-t3
(Copy and paste into your browser) 

Dr. Mercola (FREES)
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm
(Copy and paste into your browser) 

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.

Have you had a FREE T3 test?


The above is opinion only, not medical advice. No doctor degrees here. Please seek the advice of a qualified physician........ Andros :D

Graves' Disease, Lupus (Systemic & Discoid), Sjogren's and old age. ;) Armour........3 1/2 grains per day.

Welcome all members! Thank you everyone for participating on this board, for helping other posters and for sharing your experiences and wisdom!

"We Rock" 004-1-1.jpg


#4 KeepOnGoing

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Posted 30 August 2014 - 08:01 PM

Latest labs:

TSH: 0.02 (0.3 - 5)

Free T4: 25.5 (11-24)

Free T3: 4.6 (3.9 - 6.8)

 

Currently alternating 150mcg and 175mcg levo, plus 10mcg liothyronine. Oncologist insists TSH is below 0.1.

 

Dr won't increase T3 medication any further (it's very very unusual to get T3 prescribed in the UK, so I suppose I ought to be thanking my lucky stars to get it at all)

 

I'm not so much complaining about still feeling rough (although all ideas most welcome!) as trying to do what I can with what I've got! I know I'm not going to get any more T3, and NDT is out completely as far as I can tell, so it looks like I'm going to have to make the best of where I've got to... I don't feel as bad as I did before the T3 was added. At first, I felt tonnes better, but that feeling has worn off.

 

Thanks for the encouragement, Joplin - I think there's a lack of skill on my part as well as a lack of fitness.  Apparently, you're supposed to have your eyes open when you jump!!!

 

Many thanks for both your replies



#5 jenny v

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Posted 31 August 2014 - 12:09 AM

Ugh, that stinks about the T3 medication, because you definitely need more. Your FT3 isn't even at the mid-point of the range and it looks like you're a poor converter, which means you need the T3 meds even more. There's no way you could talk your doctor into a slight increase?


Thyroid problems since 2002
Diagnosed with Graves Disease 2002 and Hashimoto's Disease April 2012
TT on October 10, 2013
Currently on 90mg Westhroid and 50mcg Cytomel


Information exchanged on these boards should not be construed as medical advice. We ARE NOT doctors. Please seek a qualified physician to answer your questions before acting on any information found here.

#6 joplin1975

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Posted 31 August 2014 - 03:06 AM

Oh man...not only is your t3 way too low, but your free t4 is way too high.

What happens if you stick with 150 everday?
  • Lovlkn likes this
Papillary cancer with lymph node involvement
Total Thyroidectomy 8/29/11
TSH 71.17 on 9/14/11
RAI 100mci 9/23/11
Starting point for replacement meds: 50 mcgs of Synthroid, TSH 121.88 on 11/8/11; 100 mcgs of Synthroid, TSH 43.21 on 12/9/11; 137 mcgs of Synthroid, TSH 7.88 on 1/11/12; TSH 8.38 on 2/9/12, 150 mcgs of Synthroid, TSH 2.81 on 3/27/12, TSH 0.54 on 5/8/12, TSH 0.78 on 8/8/12, TSH 0.39 on 12/20/12, TSH 0.24 on 3/5/13, TSH 0.33 on 4/15/14, TSH .12 on 3/10/15, TSH 0.21 on 9/15/2016, TSH .12 on 2/17/17.

#7 Lovlkn

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Posted 31 August 2014 - 05:47 AM

I agree with Joplin - your labs need to be adjusted and that is the exact reason you feel poorly.

 

If you are unable to get more T-3 hormone...

 

Other items to consider having testing on - Vit D and Ferritin levels.

 

I had a hard time getting myself back after my TT and until I addressed my low D and low Ferritin, I had no energy.


Free T-4 and Free T-3 are absolutely necessary to properly dose yourself.
My experience is that 1/2 - 3/4 of range is your goal for optimal treatment

My Journey... 7 years to receive a diagnosis. TT 2004 after 4.5 years on Tapazole that had to be adjusted monthly - endo ran labs every 4 weeks. Remission was never going to happen for me so I opted for surgery to remove. Final DX by surgeon was Hashitoxicosis, TPO antibodies over 2000 and TSI 316% within the year prior to surgery. I never had a ultrasound or any lab testing to rule out cancer - pathology was negative. Post surgery I was kept hypo for many years - until I figured out how to dose my self, relying on where I fell in the FT-4 and FT-3 labs. I run TSH below range due to positive TBII antibodies. Horrible time adjusting to addition of Cytomel = patience pays off when adding this drug to the mix.

The happy ending ---> Stable dose since 1/10 Unithroid 125mcg, Cytomel 12.5mcg - labs I can live with.

None of the information on ThyroidBoards.com is intended to diagnose, treat, cure or prevent any disease. Information shared is based on my personal experiences and should not be considered medical advice. Please consult a physician before adjusting any medication.

#8 KeepOnGoing

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Posted 31 August 2014 - 08:07 AM

OK, so I might feel better if I decreased my T4 to 150mcg every day and increased my T3 to, say, 15mcgs? Would that be enough to keep the TSH suppressed?

 

It feels completely mad to be self medicating, when there's an oncologist out there whose job it is to prevent the cancer from returning. Then again, that's very different from trying to make me feel well, I know. But I do have spare T3 (you can only get 20mcg tablets in the UK) and I'm getting to the point where I'm willing to give it a go.

 

Would the small increase in T3 be enough? I've got a few months before I see the oncologist again, so can probably get away with a trial for 6 weeks, a sneaky set of labs and going back to what I'm supposed to be on in time for my next appointment!

 

Ferritin has been tested and was right at the bottom of the range, so I supplement with iron. I supplement Vit D on principle, cos I live in the UK and there's not much chance of sunshine here.

 

Meanwhile, is there anything I can do which will help with the fitness and strength? I'm fed up of being the victim - time to strike back!

 

Thanks, everyone. It makes me feel better just knowing it's not just me being a wimp.



#9 joplin1975

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Posted 31 August 2014 - 01:20 PM

Going with 150 of levo and 15 of Cytomel makes a lot of sense to me. It IS crazy that you have to self-medicate, but I really do think the small adjustments will help tremendously.
Papillary cancer with lymph node involvement
Total Thyroidectomy 8/29/11
TSH 71.17 on 9/14/11
RAI 100mci 9/23/11
Starting point for replacement meds: 50 mcgs of Synthroid, TSH 121.88 on 11/8/11; 100 mcgs of Synthroid, TSH 43.21 on 12/9/11; 137 mcgs of Synthroid, TSH 7.88 on 1/11/12; TSH 8.38 on 2/9/12, 150 mcgs of Synthroid, TSH 2.81 on 3/27/12, TSH 0.54 on 5/8/12, TSH 0.78 on 8/8/12, TSH 0.39 on 12/20/12, TSH 0.24 on 3/5/13, TSH 0.33 on 4/15/14, TSH .12 on 3/10/15, TSH 0.21 on 9/15/2016, TSH .12 on 2/17/17.

#10 Octavia

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Posted 31 August 2014 - 04:29 PM

As far as fitness and strength are concerned, my advice would be to start slow and small, then very gradually ease your way back into fitness. Perhaps start with 10 minutes of exercise on day 1, then increase by 1 minute every day...baby steps. Push yourself a little, but not too much. As you increase your exercise time and intensity, it is very likely that your labwork will reflect the additional energy expended, and you may end up needing a small increase in one or both of your thyroid meds.


- Pug lover, saxophone player
- 3.2 cm nodule, inconclusive FNA January 2011
- Partial thyroidectomy February 2011; Papillary cancer; completion thyroidectomy March 2011
- RAI May 2011
- 1-year scan in April 2012 was clear

Information exchanged on these boards should not be construed as medical advice. We ARE NOT doctors. Please seek a qualified physician to answer your questions before acting on any information found here.

#11 KeepOnGoing

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Posted 01 September 2014 - 08:16 AM

Yes, I'm wondering if that's what has happened - I felt much better when I first started T3, so I started  a little swimming and walking and within 6 weeks or so, I started to slide back into lethargy!

 

Ok, little and often. I'm off for a swim. Not a marathon...

 

Thanks, Octavia



#12 KeepOnGoing

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Posted 13 October 2014 - 05:17 PM

Quick update: after 5 weeks on 150mcg T4 + 15mcg T3 (you take your blood tests when they are offered, here in the UK!) these were the results:

 

TSH (0.3 - 5):  0.03

Free T4 (11-24) : 23.5

Free T3 (3.9 - 6.8): 5.0

 

It's the first time I've ever managed such a suppressed TSH and Frees both within ranges. I know I should have waited a few more weeks, but, as I say, I was offered the blood tests and didn't want to lose the opportunity... Just wondering if the TSH is on the rise (I know, 1/100th!) cos I know that lags behind the others...

 

I feel ok - not brilliant, but on the whole I can get through the day. I've had a few migraines, which is unusual, and some anxiety, which could easily be attributed to other stresses in my life, but generally doing ok.

 

So thanks to everyone who helped me adjust my own dose. I'm going to leave it like this until I see the oncologist in November, and see what he says then.



#13 joplin1975

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Posted 13 October 2014 - 05:21 PM

Glad you are hanging in there. :) In November, you might want to discuss a *slight* reduction to your t4 meds. That free t4 is creeping up there and if it gets too high, you can have lots of unpleasant symptoms. 


  • Octavia likes this
Papillary cancer with lymph node involvement
Total Thyroidectomy 8/29/11
TSH 71.17 on 9/14/11
RAI 100mci 9/23/11
Starting point for replacement meds: 50 mcgs of Synthroid, TSH 121.88 on 11/8/11; 100 mcgs of Synthroid, TSH 43.21 on 12/9/11; 137 mcgs of Synthroid, TSH 7.88 on 1/11/12; TSH 8.38 on 2/9/12, 150 mcgs of Synthroid, TSH 2.81 on 3/27/12, TSH 0.54 on 5/8/12, TSH 0.78 on 8/8/12, TSH 0.39 on 12/20/12, TSH 0.24 on 3/5/13, TSH 0.33 on 4/15/14, TSH .12 on 3/10/15, TSH 0.21 on 9/15/2016, TSH .12 on 2/17/17.

#14 Octavia

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Posted 13 October 2014 - 05:28 PM

Glad you are hanging in there. :) In November, you might want to discuss a *slight* reduction to your t4 meds. That free t4 is creeping up there and if it gets too high, you can have lots of unpleasant symptoms. 

 

Agreed. It's not safe to have your Free T4 high out of range...and it very likely makes you feel bad. But this is definite progress...and I wouldn't lose sleep over that very tiny increase in TSH. The tests are not THAT accurate (to the hundredth)--there's a slight margin of error, and it's very likely that there's no real difference at all.


  • Andros likes this
- Pug lover, saxophone player
- 3.2 cm nodule, inconclusive FNA January 2011
- Partial thyroidectomy February 2011; Papillary cancer; completion thyroidectomy March 2011
- RAI May 2011
- 1-year scan in April 2012 was clear

Information exchanged on these boards should not be construed as medical advice. We ARE NOT doctors. Please seek a qualified physician to answer your questions before acting on any information found here.

#15 KeepOnGoing

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Posted 13 October 2014 - 05:34 PM

I agree, if I could get that T4 down a bit more, I'd very much like to, as it doesn't make me feel good. But I'm pleased that, finally, I'm going in the right direction!

 

Just wasn't sure if the TSH was going to sweep upwards when I wasn't looking - the oncologist is very fixated on suppressed TSH and I don't want to give him any excuse to put me back on T4 only... He keeps telling me how T3 isn't as good at suppressing TSH as T4, but it seems to be working fine for me.



#16 joplin1975

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Posted 13 October 2014 - 05:47 PM

Did the oncologist give you a target range for the TSH? I know some just go with the "the lower the better" approach. 

 

There are a lot of doctors who appreciate that a patient's quality of life often suffers significantly when the TSH is that low and doesn't really have a impact of recurrence rates. http://www.medpageto...erage/ATA/42381

 

I'm sure I've posted this before (and I apologize for the repetition...I also acknowledge that this comes from the American Thyroid Association, which your doctor might not subscribe to...): 

http://www.thyca.org...sh-suppression/

 

The American Thyroid Association's Guidelines (2009) make several recommendations regarding TSH.

For initial TSH suppression, for high-risk and intermediate-risk patients, the guidelines recommend initial TSH below 0.1 mU/L, and, for low-risk patients TSH at or slightly below the lower limit of normal (0.1–0.5 mU/L). (Recommendation 40).

For long-term management, the guidelines recommend (Recommendation 49):

  • In patients with persistent disease, the serum TSH should be maintained below 0.1mU=L indefinitely in the absence of specific contraindications.
  • In patients who are clinically and biochemically free of disease but who presented with high risk disease, consideration should be given to maintaining TSH suppressive therapy to achieve serum TSH levels of 0.1–0.5mU=L for 5–10 years.
  • In patients free of disease, especially those at low risk for recurrence, the serum TSH may be kept within the low normal range (0.3–2mU=L).
  • In patients who have not undergone remnant ablation who are clinically free of disease and have undetectable suppressed serum Tg and normal neck ultrasound, the serum TSH may be allowed to rise to the low normal range (0.3–2mU=L).

About 85% of postoperative patients are low-risk, according to the guidelines.


Papillary cancer with lymph node involvement
Total Thyroidectomy 8/29/11
TSH 71.17 on 9/14/11
RAI 100mci 9/23/11
Starting point for replacement meds: 50 mcgs of Synthroid, TSH 121.88 on 11/8/11; 100 mcgs of Synthroid, TSH 43.21 on 12/9/11; 137 mcgs of Synthroid, TSH 7.88 on 1/11/12; TSH 8.38 on 2/9/12, 150 mcgs of Synthroid, TSH 2.81 on 3/27/12, TSH 0.54 on 5/8/12, TSH 0.78 on 8/8/12, TSH 0.39 on 12/20/12, TSH 0.24 on 3/5/13, TSH 0.33 on 4/15/14, TSH .12 on 3/10/15, TSH 0.21 on 9/15/2016, TSH .12 on 2/17/17.

#17 KeepOnGoing

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Posted 13 October 2014 - 05:57 PM

Thanks for the info, Joplin - as you say, I expect we're a few years behind you over here in the UK.

 

He started out by saying that I was at low risk of recurrence (follicular variant papillary carcinoma, encapsulated, no spread to lymph nodes etc) - but he wants my TSH to be below 0.2. I'm not sure how long this will be necessary - perhaps we will be able to lighten up a bit in a few years?

 

I don't really want to rock the boat too much, as he might just take the T3 away if I suggest TSH could be higher - leaving me feeling like "death-not-particularly-warmed-up" again!

 

But if I could sneak it up to the 0.19 mark, that might help...



#18 Andros

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Posted 15 October 2014 - 08:04 PM

You definitely need an increase in your exogenous T3.  Most definitely.  TSH is no longer the dosing criteria.  Your FREE T3 is very very low.  Most of us like our FREE T3 to be in the upper half of the range provided by your lab for that test.

 

Your TSH will stay suppressed; have no fear about that.

 

Hugs,


The above is opinion only, not medical advice. No doctor degrees here. Please seek the advice of a qualified physician........ Andros :D

Graves' Disease, Lupus (Systemic & Discoid), Sjogren's and old age. ;) Armour........3 1/2 grains per day.

Welcome all members! Thank you everyone for participating on this board, for helping other posters and for sharing your experiences and wisdom!

"We Rock" 004-1-1.jpg


#19 Andros

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Posted 16 October 2014 - 11:14 AM

What happens is usually the T4 builds up and converts to rT3 (reverse T3) and that makes a person feel really really bad.

 

So, it is good that you lowered the T4.

 

The proper balance is 38 mcg. (T4) to every 9 mcg. (T3.)  So you can see why you may be in trouble here.  I require 3 1/2 grains of Armour daily.  That is 31 mcgs. of T3 for me.  I am 71, female, proper weight and very active.


The above is opinion only, not medical advice. No doctor degrees here. Please seek the advice of a qualified physician........ Andros :D

Graves' Disease, Lupus (Systemic & Discoid), Sjogren's and old age. ;) Armour........3 1/2 grains per day.

Welcome all members! Thank you everyone for participating on this board, for helping other posters and for sharing your experiences and wisdom!

"We Rock" 004-1-1.jpg


#20 KeepOnGoing

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Posted 16 October 2014 - 05:44 PM

So does that mean that, instead of 150mcg (T4) and 15mcg (T3), I'm more likely to need 130mcg T4 and about 30mcg of T3?  Heavens, I can see why I'm struggling if that is the case.

 

I will try and talk to my oncologist about this. At least when he refuses to increase my T3 any more, because it "doesn't suppress TSH as well as T4", I can point out that I've already done so and it has been jolly effective at TSH suppression!

 

I've never had Reverse T3 measured. Are there any members in the UK who've managed to get this test? It does sound that it's likely that this is indeed the problem - all that T4 has got to go somewhere.

 

I suppose the next step is to reduce the T4 again to alternating 125 and 150, and increase the T3 to 20mcg (or perhaps 25mcg?)

 

I wish we had access to Armour.

 

Thanks, Andros, for all your help. If it wasn't for you and this forum, I'd still be stuck dragging myself through the day, more than 2 years after the event.






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