“Air Hunger”

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Hi Everyone,

I have a question. I appreciate we’re not medical professionals, but I just wanted to see if anyone in the group has experienced anything similar.

I was diagnosed with “classic” PTC of Thyroglossal Duct Cyst which I had removed April this year, followed by a Total Thyroidectomy in the beginning of July (Thyroid was clear).

Final staging was Stage I PTC (no distant mets no nodal spread).

I had RAI (100mCi / 3.7GBq) in mid September which was uneventful. SPECT/CT post-RAI showed uptake only in the thyroid bed

About 2 weeks ago I started experiencing intermittent “air hunger”. At times I am unable to “complete” a deep breath. I try to breathe in deeply every few minutes (ie I feel the need to), but I don’t get the “satisfaction” of a completed deep breath. Every few deep breaths (sometimes when yawning) I’m able to complete it and get the deep breath “satisfaction”.

This happens a few times an hour regardless of what I’m doing, but not while I’m sleeping (at least I assume so as it doesn’t wake me up). It doesn’t seem affected by exercise, in that while I still experience the sensation while rowing for example, it’s no worse than usual and doesn’t stop me from completing my exercises as normal.

I saw a number of docs.

Chest X-ray : normal

ECG : normal

Blood tests (CBC etc.): normal

They all seem to think it’s anxiety / stress related. I feel neither stressed nor anxious and I’ve never experienced this sensation in my life before (I’m 37), even in situations where I’ve been far more stressed.

The doctors I’ve seen seem to think it’s unrelated to any thyroid/hormone issues.

My latest bloods are (I’m on 175mcg Levo):

FT4 : 24.3

FT3 : 3.43

TSH : 0.48

Tg : <0.1

Tg Anti : 0.2

I’m wondering if my relatively high FT4 could be causing this.

Anyone experience anything similar?

Lass over 4 years ago

Hey there Kettle,

Welcome to the forum, though I'm sorry you find yourself here.

Just wondering, have you had a calcium test and do you wear a step tracker that monitors your heart rate? Also, has any doctor checked your blood pressure?

One thing is that a high T4 mimics signs of stress/anxiety. Your T4 is at the top of some ranges which have a normal T4 maxing at 25, so it's not massively high. However you may get some symptoms of stress/anxiety because of it which is why I ask about the heart rate and blood pressure.

Your TSH is already higher than ideal so close to diagnosis, so you probably can't ask to reduce your dose of thyroxine yet. So this might have to be your new normal for the next 6 ish months until they do your 9 to 12 month check up. After that, if all is clear, then they may be able to reduce your dose and you'll hopefully find that it clears up again.

Lass

I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

KettleDrum over 4 years ago in reply to Lass

Hi Lass,

Thanks for the welcome!

To answer your questions:

My calcium was last checked 2nd October and it was:

Calcium: 2.32

Albumin: 47

Adj. Calcium: 2.18

Regarding my heart rate, yes I wear a Fitbit. Heart rate is pretty normal. Resting HR in mid-60s. Average during exercise 120-130 with peaks of 160 or so. So all pretty standard.

Blood pressure is elevated. Not high/hypertension but pre-hyper / high end of normal, sometimes just over. Been like this for a few years though so no idea why it would affect my breathing now (unless in conjunction with the thyroid hormone changes after my thyroidectomy).

Anyway, it seems to have gotten slightly better in the last day or two (and not thinking about it and trying to ignore it does wonders too) and exercise if anything actually makes it better I’ll just have to suck it up and see how I get on, I just wanted to see if anyone with PTC post-TT has experienced anything similar, and if so what it turned out to be in the end

Thanks again!

safcfi85 over 4 years ago in reply to KettleDrum

Hi I was treated for follicular thyroid cancer last year and I’ve had similar symptoms to the ones you describe, particularly at night. I wasn’t sure if it was the effects of the meds or anxiety even though like you, I wouldn’t say I feel particularly anxious. My doctor said he thought it might be a bit of both, since that discussion it’s settled down a lot, I’ve also found doing more exercise has helped so now I’m inclined to think it probably has been anxiety. I hope this helps x

Fi. X

KettleDrum over 4 years ago in reply to safcfi85

Hi Fi,

Thanks for taking the time to reply. Really appreciate it. Sometimes it helps just knowing that other people have experienced similar things.

Hope your anxiety situation has resolved!

All the best!

Kettle

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