Mysterious breathing issues post thyroidectomy, maybe related to replacement therapy

[siguy22]

I had my whole thyroid removed for papillary thyroid cancer in October 2019. About 3 weeks after surgery, I started getting serious dyspnea that progressed to all day even at rest, sinusitis, and chest pressure. I have been dealing with this for over half a year, it’s horrible.

I had the surgeon check my vocal chord motion, and it looked fine. They were confident the surgery didn’t mess up my vocal chords. I can still talk normally. I just get air hunger after talking for a long time, which is probably related to my just general air hunger.

I then thought maybe I was too hyperthyroid, so my Endo lowered my dose of Levothyroxine, but it didn’t go away. It only made me severely hypo thyroid for a period of a few months, so they upped the dose again.

I have had a spirometery test done, an echocardiogram done, etc, and TJ e pulmonologist and cardiologist weren’t concerned. I am going back for a bronchoscopy/chest ct scan.

The theory I am working with rn is that it is a symptom of GERD/Acid reflux, as I do get regurgitation and other more classic acid reflux symptoms occasionally. I am being tested accordingly.

But something else I’ve heard is that maybe it’s my medicine causing me these issues, the shift in hormones. I’ve read medical articles about thyroid patients who suffer breathing issues from a multitude of reasons, from diaphragm not picking up to decreased central drive. My most recent TSH was 1.37 mIU/L, most recent free t4 was 1.7 ng/dL. Taking 200mcg Tirosint a day, weigh 264lbs.

Does anyone have any comments/advice?

[Meanbeannyc]

Have you tried increasing your dose? Rather than decreasing?

[siguy22 in reply to Meanbeannyc]

That never occurred to me, because when I first had this symptoms in November 2019, my TSH was pretty much suppressed at .65. And plus shortness of breath is more commonly associated with being hyper than hypo. I could try it but I'm a little scared of going hyper.

[Meanbeannyc in reply to siguy22]

If you take tirosint I know there is a 13mcg, why don’t you just add the 13 on one day and that’d even out to like 202mcg T4/day? Take 200x6 and 213x1. Your TSH is high. Not low. Is your FT4 out of range high?

[siguy22 in reply to Meanbeannyc]

I could try that. But another thing I'm not sure about is my t3. In all my blood tests, my free t4 always comes back slightly higher than the highest normal range. 1.7ng/dL as mentioned was my most recent. But the only time my t3 has been tested, it was a few decimals below the lowest value. May that have something to do with it?

[Meanbeannyc in reply to siguy22]

Why don’t u try the small raise? If the decrease didn’t help

[SlowDragon Administrator in reply to siguy22]

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

[siguy22 in reply to SlowDragon]

200mcg brand name Tirosint, recently switched to Tirosint from 200mcg Brand name Synthroid

[SlowDragon Administrator in reply to siguy22]

Come back with new post once you get full thyroid and vitamin results and ranges

What vitamin supplements are you currently taking?

[siguy22 in reply to SlowDragon]

For the vast majority of this time, nothing. Very recently I have begun a generic Iron and a generic d3 supplement. Although I am thinking of stopping these and requesting a full vitamin test for those things, and I want the results to reflect what was going on, unsupplemented.

[SlowDragon Administrator in reply to siguy22]

Even if prescribed iron you should stop any iron supplements a week before testing iron or ferritin

Vitamin D, just don’t supplement on morning of test

[SlowDragon Administrator]

Just testing TSH and Ft4 is completely inadequate

Poor conversion of Ft4 to Ft3 is common after thyroidectomy.

Low Ft3 will cause low stomach acid, acid reflux and low vitamins

Low iron or ferritin common when under treated and often leads to breathlessness

Suggest you get FULL thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip,)

Many patients after thyroidectomy need addition of small dose of T3 alongside levothyroxine if conversion of Ft4 to Ft3 is poor

Testing and getting vitamins optimal and fine tuning levothyroxine dose are first steps

If Ft3 remains too low after this then will need T3 as well

Come back with new post once you get results

[siguy22 in reply to SlowDragon]

Thank you very much. Is there any place I can order a 1) TSH, Free t4, Free t3, Total t4, total t3 and 2) vitamin d, folate, ferritin, and b12 test myself and just foot the bill myself? I know my doctor will not be a fan, I am in the process of trying out multiple endos.

[SlowDragon Administrator in reply to siguy22]

Are you in the uk?

[siguy22 in reply to SlowDragon]

Sadly not, I am in the US. I just realized that may cause problems with finding me a place to order tests from, I will check it out

[SlowDragon Administrator in reply to siguy22]

Well many leading thyroid specialists are USA based

Susan Blum

Chris kresser

Amy Myers

Isabella Wentz

Dr K

Westin childs

Etc etc

Here’s a few websites

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

[pennyannie]

Hello Siguy and welcome to the forum :

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4- synthetic brand name Levothyroxine / Tirosint + 10 T3 - synthetic brand name Liothyronine.

T4 is a storage hormone and your body needs to be able to convert this into T3 which is the active hormone that the body runs on, and I understand T3 to be about 4 times more powerful than T4 and the average person uses about 50 T3 just to function.

Your ability to covert the T4 into T3 can be compromised if your core strength is not strong and especially ferritin, folate, B12 and vitamin D need to be maintained at optimal levels and you may need to supplement these yourself as you may be in the considered acceptable ranges, but we need higher than average results as we on the back foot, having had surgery and living without a major gland.

Some people can get by on T4 alone, some people simply stop converting T4 into T3 at some point in time and some people simply need both these vital hormones dosed and monitored independently to bring both essential hormones into range and to a level of wellness acceptable to the patient, which generally means both T3 and T4 being in balance and in the upper quadrants of the ranges.

In order to have a considered opinion and a better understanding of what is going on it will be necessary to post, with the ranges, a full thyroid blood panel result to include TSH, T3, T4, antibodies, plus the vitamins and minerals as detailed above.

[Hidden]

Without a thyroid gland and on levothyroxine alone, it is normal to feel completely kna****ed all the time. Consider taking NDT instead. A common cause of breathing problems is a goitre expanding inwards and crushing airway, which is for you obviously inappropriate.

BUT, as I have now experienced for myself, it is also possible when taking certain drugs for a different medical condition. Check the list of side effects with anything else you are now taking.