# Papillary Carcinoma Survivor but feeling like...



## bgalbraith (Jan 19, 2015)

...I'm JUST surviving.

Long story short, 46 year old male, thyroid was diagnosed with tons of nodules 2.5 years ago, had to come out, biopsy during surgery showed papillary carcinoma. Did the RAI thing after, months later, numbers still high, tracked down a tumor right below the thyroid, took it out 1 year later, numbers fell to undetectable with 2 follow up tests so far and a Thyrogen test in process right now. Done the full RAI 4 times. Oncologist is fairly renowned and feels very confident it's all gone. We shall see.

My last blood tests in September:

Type Result Range

T4, FREE 1.9 0.8-1.8 NG/DL

TSH 0.72 0.40-4.50 MIU/L

T3, FREE 3.1 2.3-4.2 PG/ML

However, my Endo had to put me on beta blockers as my heart was about to beat out of my chest and BP was high at times 165/110 ranges. The days after my second surgery my BP (on the machine in the hospital) would be 100-110/70ish with a rate of 60-65, nurse would come in and give me my 200mcg of Synthroid and I could just watch the BP/Rate climb. The beta blocker stopped that.

The problem?

Massive weight gain, joints hurt, bad tinitus (ear ringing) head itches, moody, terrible memory, terribly short on energy especially around mid afternoon I'm toast, if I push it all week then I'm resting all weekend. My BP is usually 120ish over 80ish which isn't bad considering the weight I've gained. I'm 6'1" and was 250 and solid before all of this.... now I'm over 300 a bit and a tub of lard. Just no energy to exercise, barely enough at times to do the basics and handle my business.

Basically, I feel like I have the flu every day.

Obviously, to me, my adrenals are out of whack and without the blockers I'm a heart attack waiting to happen, if I keep up the weight gain then diabetes (don't have it yet) could kill me first. Yet, I think the blockers are partially responsible for my weight gain.

I need:

1. My energy back, I've always been high speed, low drag...now just all drag.

2. Lose weight... 50-80lbs.

3. Reduce or get rid of the other symptoms, especially the tinitus and joint/muscle soreness. I feel like an old man....look like one too.

I've read and read but there's too much out there and too many variables/situations.... we are all different.

Gotta start somewhere... thoughts?

Brad


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## joplin1975 (Jul 21, 2011)

Your free t4 is waaaaaaaaaaaaaaaaaaaaaaaaaaaay too high and you will continue to feel like roasted doggie doo-doo (sorry for the visual  ) if it stays that high. Your free t3 is just under mid-range. The two results account for they awful mix of hyper and hypo symptoms.

Is your doctor open to prescribing Cytomel? I would ask to have the Synthroid dropped and add in Cytomel. I don't use Cytomel so I can't advise how much and how often, but others here use it frequently and will be along shortly to help.


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## bgalbraith (Jan 19, 2015)

You bring up a good point and one I have been thinking about. When preparing for RAI I would go on Cytomel at one point since Synthroid is 3-4 weeks in your system but Cytomel is something like 12 hours. Then after RAI she would put me on both to get me back up quickly...which works.

My next conversation is doing exactly what you suggest... maybe go to 150-175 on Synthroid and add some Cytomel.

Any other thoughts?


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## jenny v (May 6, 2012)

I second the Cytomel and if that doesn't work, switching to something like Armour. You look to be a poor converter (as evidenced by your high FT4 and low-ish FT3) and with your FT4 that high, it's no wonder you need the beta blockers.


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## webster2 (May 19, 2011)

I was also going to suggest cytomel. I tried just levo, nature-throid and found the best combo was levo & cytomel. I felt like I rejoined the human race again. It might be worth a try for you. Good luck!


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## Octavia (Aug 1, 2011)

Nothing new to add here, but I just wanted to support what the other posters have said. You've gotta get that Free T4 down. My heart goes crazy when I'm at the very upper end of the Free T4 range, and when I'm out of range, well, that's just no good at all. Cytomel would be a great addition for you...but be sure to lower your Synthroid dose.

Best of luck that you find a solution that works for you.


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## Lovlkn (Dec 20, 2009)

Cytomel it is! I also have to agree that is the most logical choice for your situation.



> My last blood tests in September:
> 
> Type Result Range
> 
> ...


I for one have experienced high FT-4 and feel awful - Reduce your levothyroxine and add 5mcg of Cytomel. Retest in 6 weeks - I would imagine your TSH will completely suppress when you get to 3/4 range in FT-4 and FT-3. Break your Cytomel ( as small as it is) into 1/2 and take 6 hours apart, if you have any anxiety or increased hyper symptoms break into 1/4 pieces and spread out every 6 hours or so.


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## KeepOnGoing (Jan 2, 2013)

Another one to endorse the cytomel route!

I felt absolutely awful with a high FT4 and low FT3 - all the worse symptoms of hyper and hypo at the same time.

Since I've eventually persuaded them to let me have some T3 (I'm in the UK, where it's a real battle!) I feel like I've got my life back.

Some people notice the power of the T3 straight away - hence the advice to split the tablet. However, I'm one of those who couldn't really tell if I'd taken it or not - but over a period of 3 or 4 weeks, I began to realise that I could get through the day without needing a nap.

It's important to get the FT4 down, as well as the FT3 up - otherwise you still won't feel well. I'm still tweeking my doses - 125/150 mcg T4 and 20mcg T3 seems to be about right - before this I was on 200 mcg T4 only in order to suppress my TSH. I felt rubbish!


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## Andros (Aug 26, 2009)

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.

Welcome!! I agree with the others totally and I am providing info for you.

The more you have your Synthroid increased, the higher your FT4 will go and I will bet if you had an rT3 (reverse T3) test it would be high also.

If you don't have adequate FT3 in your system, that will also cause arrhythmia of the heart. Too much or too little causes that; it works both ways. Your FT3 has to be just right.

If your doctor is not amenable to these suggestions; find one that is. Your TSH has to remain suppressed also as you well know.

Good luck! And keep us in the loop!


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## bgalbraith (Jan 19, 2015)

I really appreciate everyone's feedback and advice. Obviously it's a try and test thing but I tend to agree and have a reqest in for labs to do a current test then TELL her what I want to do, I'll let her decide on initial dosage.

...just received notification that they will setup labs for me locally and have results in 2 days. Maybe by the end of the week I'll see where I am now.


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## Octavia (Aug 1, 2011)

Excellent! Keep us posted.


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## bgalbraith (Jan 19, 2015)

See...this is the kind of crap I'm dealing with. From her nurse:

"I asked Dr. XXXXX what labs she needs and she order Ft4 and TSH no need for FT3,"

Which is BS and tells me it's time for a new Endo. I specifically asked for FT4/FT3/TSH.


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## joplin1975 (Jul 21, 2011)

Oof. That's frustrating. Definitely look for a new doctor. You've had enough challenges and deserve to feel well!


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## bgalbraith (Jan 19, 2015)

I have my Oncologist sending my records and a referral to another group, no telling how long it will take to get in.

What gets me is even if my FT4 is down (which I'll bet it isn't) how do you know I'm converting to FT3 effectively if you don't test for it??? And if I'm not converting do we just keep on making me feel like crap everything else be damned???

Remember the definition of Insanity...


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## joplin1975 (Jul 21, 2011)

Agreed.

There are a lot of articles, conference proceedings, etc that question the validity of t3 therapy. But there are an awful lot of people on these kinds of patient advocacy forums who report fantastic results.

I'll be honest and say that I steer clear from t3 meds, but that's simply because my free t3 is always relatively higher than my free t4. I firmly believe that we are all very, very different and the one size all approach just does not work.


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