TT, follicular CA, RAI...anxious

[shir0]

Hi everyone!  I'm new here, 30yo male from the Philippines.I have been diagnosed with "minimally invasive follicular CA of the thyroid (right) just last June of '09. It's quite a long story...had several FNAB done on the single nodule on my right neck in 2004, 2005 and 2009.  All came back benign.  The 2009 FNAB was even taken from multiple sites on the node still the results were benign. All blood works showed my TSH, FT3 as normal with FT4 wavering from a bit (we're talking hundreths difference) from the low and high normal boundaries.  Still, my surgeon and endo was adamant about thyroidectomy and a 'frozen section histopath'.  I had no more savings left and my insurance won't cover 2nd opinion cases so I had no choice but to go trhough with my surgeon's and endo's recommendations.  I had right lobectomy of my thyroid done on 06-25-09, but the frozen section histopath team was not sure about their conclusion on their examination of the nodule. So they closed me up. After three days, full histopath showed a "minimally capsular/vascular invasive follicular CA".  They then had me undergo complete TT. Since then, I was immediately put on a 'hypothyroid state" and no synthroid/armour was given to me for immediate preparation for RAI in 4 weeks time.  I don't know if this was too agressive or not.  The things is, during the first and 2nd week after my TT, I was already eating well and was able to swallow w/o problems.  By the 3rd week...after the ahesive strips were removed from the neck incision, I started to have swallowing difficulties.  I consulted with my surgeon and endo, they both agreed that it was just a manifestation of my hypo state. IS THIS TRUE? IM THINGKING IT"S MORE AN UNWANTED SIDE EFFECT OF THE TT!!!? I'm going nuts at this point. I'm post RAI, the swallowing difficulty is still there and now compunded by fatigue and slight difficulty in breathing.  Both my doctors say that there is not much  swelling to cause both swallowing and breathing problems but what I'm feeling says otherwise. I don't know what to think or do at this point. PLEASE HELP ME!

[Smilerdeb]

Some people are very drug sensative and you may find that you have to take 'baby steps' and go up in dosing slowly.
I know thats how I was.
I was also advised and took my Docs advice to continue with the beta blockers when needed to help alleviate the symptoms of palps.

I cannot really answer your question in regards to how long the pals will last as to be honest, I have had them from the day I was born as i was born with Rheumatic Fever and a heart murmur (something you learn to live with).
But what I can tell you is........
Normally you would take the synthroid and then 1/2 an hour to an hour later...take the beta blocker.
if you find it makes you dizzy...then divide the dose up of the beta blocker.
It isnt unusual for someone to be on a beta blocker after RAI or at the start of taking a T4 med.

I remember the first few days of taking my T4 med....I was more scared of swallowing the med than anything after having numerous episodes of allergies to different medications.
I ...in fact, developed a 'phobia' thinking that any med I took would result in anaphalactic shock as it had in the past.
I then realised that it was a phobia , that the T4 med wasnt going to kill me.
So to allay my fears, I went to my Doctors , explained all this to him and he had me visit every morning to sit in the waiting room after taking the T4 med to put my mind at ease that it wasnt going to cause anaphalactic shock.
I was also the same with Carbimazole (anti-thyroid meds).

Explain the symtoms to your Endo and if it is moreso a 'phobia' of what 'might ' happen,.....then explain all this to her.
She will see you through this if she is a good Endo and allay your fears.
If in actual fact, the meds are causing palps, then she will prescribe a different med for you.
But please be aware that the dosage you are on isnt even the dosage for a child with no thyroid.

It is scary after RAI and TT...and it does take some 'acceptance' on your part that it now all finally over and now is the time to start going 'forward'.

I will tell you honestly that I did find things hard to accept at first.
Acceptance is the key to moving forward to wellness.

And getting your levels right can take up to 12 months, sometimes longer but you will sure as he// feel better than you do now.
Take baby steps and take it slow.

Good Luck..dont hesitate to PM me if you need any help.

[shir0]

Thanks for the clarifications. So my anxiety of having another issue with the "swallowing difficulty" and "Breathing problems" are now allayed a bit. But now...I think I'm in hypo problem state.

@ Stella, I can't post any labs results yet coz I don;t have any. The last lab test done on me was just for TSH level prior to my RAI and it was on ~14+.  No ultrasound has been ordered by my endo or surgeon yet to check for scar tissue too.  Should I have this done without their consent?

My endo had me started immediately on 125mcg synthroid 5 days after my RAI. I did that but I started palpitating and the shortness of breath worsened the first time I took the replacemenr hormone at that dosage. I informed my endo that same night I first took the 125mcg synthroid and she said to try and halve the dosage for two days and then consult with her. I was a bit afraid to use half dosage so I took 1/4 of 125mcg (31.25mcg) instead. The palpitations died down a bit but it's still there and the shortness of breath is in full swing still.

Now my endo also said that there's no need to perform blood works yet as the hormone replacement will not become apparent until two weeks later. So I will be consulting with her tomorrow with no basis for diagnosis or titration. Kinda *****.

@smilerdeb:  Your words encourages me. As I've said, I'm now on hormone replacement but I'm quite a bit shocked abot the palpitations.  Based on your experience and on others that you know about, how long does the initial "extreme palpitations" would last from the initial intake of synthroid? Do I really have to endure that? Is it safe when m heart is involved? If I really have to take 125mcg, I need to know (approximately) how long I should expect the bad initial reactions would last.

I'd really appreciate any insight you have on this...

[Smilerdeb]

I had the 'swallowing issue before and after RAI ...and found I was Hypo.
Then had TT 3 months after RAI and went through the same 'sensation'.
I would say that you should be on a T4 med to start with but I think maybe the Endo wants to make sure that the RAI hasnt made you Hyper (T3 toxycosis).
Usually labs are done 2 weeks after RAI and with you having TT too....you are Hypo and this would be where the 'choking or swallowing' sensation is coming from.
Also the symptoms of not getting enough air into your lungs (shortness of breath and large gasps ) are also a sign of Hypo.
if you havent already got your levels done...get them done now and ask yr Endo for a replacement thyroid med.
Dont go too long without thyroid meds or you will feel like he// as Stella said.

[stella5349]

OK you have been through an awful lot here. Let's step through this.

You had a PT then a TT of the gland. They found follicular CA in there right?

Now you are left "dry" as I call it with no meds and no gland pumping in to relieve you of slipping into hypothyroid.

Your post RAI now which mean you had the iodine to kill off any residue left - IN CASE - there was still any speculation of cancer being in there. I am pretty sure cancer in the follicular stage is a more ratical treatment then just pap cancer.

You are mentioning you are having a swollowing issue which "could" relate to slipping into hypothyroid. Have you started on meds now since the RAI? What were your latest labs?

I think it was a blessing you had the full TT with your condition. Your surgeon is good and want to help you.

Goind into hypohe// is bad and patients that undergo a TT with RAI do experience many issues you express.

Have they done an ultra sound on the area - just to make sure scar tissue isn't forming?

Being hypothyroid cause "swelling' regardless of a thyroid not being there anymore. Many complaint of a lump or swollowing issues  when they are crashing into it.

Post your tests. What meds are you on now since the RAI?