puffy throat

[Ashupan]

it’s been nearly 6 weeks since Thyroidectomy. My face and throat feel puffy and swollen. Doesn’t hurt. Just uncomfortable when I put chin down.

[Jack80feb]

Hello sorry you feel that way i am a Type 1 Diabetic but also have Hypothyroidism, it took them 10 years to diagnose me, i was doing blood test's and my Thyroid would come back as abnormal but the GP's would just ignore it they never once phone or written a letter to tell me about this, anyway i found out of a Locum and he said he would try and get me to see a specialtist but the GP's and my surgery blocked him saying i do not need to see one, but i disagreed and changed Doctors Surgery's and with 0ne blood test done with the new GP he said i have Hypothyroidism and it can be in connection to your Type 1 Diabete's so right away he started me on Levothroxine, my older Brother is a Type 1 Diabeteic and also has Hypothyroidism, i feel like sh*t evey day aniexty hot sweats mood swings no energy aching bones and joints its terribel.

[Rainbow-Lover]

I had a TT in 2012 and was fortunate in not having any post op symptoms. I think a lot depends on why the TT is done and how you’re medicated when your TT is complete.

My thyroid was removed because I had thyroid cancer. I had excellent blood results when my fully functioning thyroid was tested the week before surgery. I was fit and well in spite of being treated for breast cancer at the same time.

The day after my surgery I was started on a large dose of T3 (Liothyronine) and I think this really helped my recovery. I think that if you have a TT followed by a period of non medication or even Levothyroxine your chances of a speedy recovery are hindered as your body tries to cope with rapidly declining hormone levels in addition to post surgical debility.

I hope you feel better soon and wish you well 😉

[Ashupan in reply to Rainbow-Lover]

Hi Rainbow lover. Did u hv RAI afterwards? How was it? On Aug 567 th I will have this treatment.

I am terrified of the saliva glands being damaged.

[Rainbow-Lover in reply to Ashupan]

You’ve sent me a PM which I’ve just answered 😉

Can I ask where you are in the UK as this isn’t commonly used post TT now?

Edit  Ashupan

I’m sorry that I’ve only just noticed you’re in Australia. I don’t know what their position is in relation to RAI. I’m not medically qualified and you should follow the advice of your oncologist but ask for full details of potential side effects etc so that you can make an informed decision.

[Ashupan in reply to Rainbow-Lover]

I know. The possibility of wrecking my salivary glands , etc are what’s worrying me. But here in Aus, especially if cancer cells hv escaped, as with me, then the alternative isn’t good either.

I would be so very grateful if u would let me know more details of what happened to you. Of course it’s non medical opinion.you are you. And I would be very grateful to you.

[Rainbow-Lover in reply to Ashupan]

I, like you, had little option as the cancer was very large and remnants left behind in the thyroid bed were many. That said, I did have to sign a consent form which cited the main long term side effect as being a possible additional primary cancer.

The procedure itself was painless. I had to come off thyroid meds and follow a low iodine diet for three weeks beforehand. This was to raise my TSH so that I was hypothyroid. My TSH was at 89 when they did blood tests before the procedure began. This meant that any remaining thyroid/cancer cells were desperate for iodine and the little blighters sucked up the radioactive iodine and died a death befitting their cancerous state

That period before the procedure was probably the worst part of the whole thing. I was desperately tired and my cognitive ability was zilch. Our house was covered with post-it notes to remind me of everything. I knew that this was only temporary though and that helped me through it.

I was in an isolation room for three days after swallowing the radioactive capsule and saw no one except a radiographer who stood at the door each morning dressed in a space suit and pointed a Geiger counter at me. When the horrifyingly loud rattle diminished and became just a whimpering groan I was allowed to go home as long as I kept the required distance from other people. I had been warned about the possibility of damage to salivary glands so took their advice to suck lemon sherbets at every opportunity to stimulate the glands. I didn’t have as much as a dry mouth and there was no damage to the glands. In the short term, I had no side effects or problems at all and resumed T3 meds as soon as I was discharged. There were inevitable problems when they stopped the T3 6 months later and tried to put me on Levothyroxine but that isn’t really part of this story. Suffice it to say, that after a dreadful two year period of being on various doses of Levothyroxine, my oncologist and various endos agreed that anyone whose had a TT doesn’t do well on Levothyroxine and need some T3 (Liothyronine) as well. This might be something you need to be aware of

I’m now 12 years down the line from this treatment and my health is abysmal, even with optimal thyroid and nutrient levels. Neuropathic pain, osteoarthritis in most joints and crushing fatigue began in 2014 and my attempts to overcome these with the help of medics is an uphill struggle. Two consultants at the Pain Clinic have unequivocally stated that they believe RAI has contributed to, if not caused, these problems.

Sadly, my liver, stomach and gall bladder have recently joined the party and I am currently undergoing investigations for an abdominal cancer.

I can’t say for certain that anything which ails me is the result of RAI. I can only say that there is no family history of any of these conditions and that until I had RAI I was a fit and active woman. I remember well one of the two Pain Consultants who spoke to me about their opinions of the effect of RAI on my body:

“You’re not a stupid woman. Consider the journey that the radioactivity made as it was excreted from your body and while it was swilling around inside you …. “

I have to repeat that this has been my personal experience and there may be many who will say that they have had RAI without ill effects. My brother in law had RAI several years before I did in order to destroy his thyroid as he had Graves Disease. The dose was smaller but now, several years later, he has similar symptoms but to a far lesser degree.

I’d like to think that we had a choice in all this but as you rightly say, when we’re up against the wall we just have to follow medical advice and hope for the best.

I wish you well ……. keep sucking the lemons 🍋 x

[Brightness14]

Hi I had a TT back in 2015 because the lump on my thyroid had moved my Trachea. Before I had no thyroid problems and it was still working well. Mine op went well with no complications. They did find a tiny amount of Papillary Cancer afterwards.

Are you on the correct dose and what cancer did you have also did you get a blood test before your operation to find out your levels. Lots of questions sorry.

I hope that you feel better soon, good wishes.

[Ashupan in reply to Brightness14]

I had thyroid plus lymph nodes cancer. Surgical removed. Reason for RAI to quote , mop up stray cells. On 125 Eltroxin which seems to be ok.

Just so very anxious for RAI

[Brightness14]

What type of Cancer was it, do you know?

[Poniesrfun]

Back to puffy face and throat – not uncommon after TT. Quite possibly lymph drainage. There's a lot going on in our neck and the normal inflammation from healing can compress some lymph vessels and cause poor drainage.

If you can get a referral to a physical therapist who can teach you lymph drainage I think you'd find it helpful. If unable to get a proper referral, there are online sites which show the basic techniques. uhn.ca/PatientsFamilies/Hea... I was taught to do lighter stroking and tapping rather than stretching. Even after several years (TT 2016) I occasionally need to do some drainage when my neck feels "full".

Patti in AZ