Hi everyone
I had a total thyroidectomy in July and have had nothing but trouble since. I keep getting swelling in my neck and have had numerous scans, Ct scans etc. My Gp now thinks I could have Laryngeal nerve damage and has asked for blood test to be done. He has also put me on Amitriptyline.
Has anyone else had this happen to them?
Thanks
Looking at previous posts your dose Levo was reduced recently?
How much levothyroxine are you taking now
Do you always get same brand
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
you need TSH, FT4 and FT3 tested
And Very important to test vitamin D, folate, ferritin and B12
Exactly what vitamin supplements are you taking
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
I’m now on 100mgs and get my bloods tested next week. I’m not taking any vitamin supplements.
Insist on testing vitamin D, folate, B12 and ferritin
Or test privately
Have had ludicrously large reduction in dose Levo to 50mcg …..it likely crashed vitamin levels too
Did you ever post the results from the tests you had done when your doctor said you were “tripping” on too much thyroid hormone?
(I’ve heard some corkers in my time but that line takes some beating… 😂)
Just trying to work out whether it ever was something to do with you having too much thyroid hormone in your system or whether something else entirely might be going on.
I’ve had my level lowered to 50 and now back up to 100. Blood test next week so I’ll have results then but don’t think it’s related as it’s been the same inflammation regardless of levels of thyroxine.
But you’ve had a thyroidectomy! 50mcg is incredibly unlikely to be enough replacement hormone.
That’s fine, you don’t have to post the earlier results if you don’t want to.
But don’t rule out under medication as part of the cause. Thyroid hormone is needed by every cell in the body to function correctly. Which is why we feel so rotten when our thyroid hormone levels are low.
Hello Josie2 :
Just to mention that a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1,T2, and calcitonin + a measure of T3 - at around 10 mcg + a measure of T4 at 100 mcg.
T4 is Levothyroxine - which is a pro-hormone that needs to be converted in the body into T3 which is the active hormone that runs the body and is said to be around 4 times more powerful than T4.
In order for T4 to convert well into T3 in the body we need to maintain optimal levels of core strength vitamins and minerals especially those of ferritin, folate, B12 and vitamin D and when hypothyroid and with a slowed metabolism the body can struggle to extract these key nutrients from our food and so why many of us need to supplement same.
The thyroid is a major gland responsible for the full synchronisation of the body from ones physicality and stamina through to ones mental, emotional, psychological and spiritual well being, ones inner central heating system and ones metabolism.
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not the TSH - you do not have a working thyroid and your HPT axis - on which the TSH relies on as working well is now not working as this Hypothalamus - Pituitary - Thyroid feedback loop is now broken and open ended as there is no thyroid in situ - to complete the loop -
and your TSH is now an unreliable measure of anything..
We generally feel best when the T4 is up in the top quadrant of its range at around 80% with the T3 tracking just behind at around 70% through its range.
The first line treatment is T4 - Levothyroxine and many can get by on T4 monotherapy.
Some find T4 doesn't seem to work as well as it once did and need to add in a small dose of T3 - Liothyronine - likely at a similar dose to that their thyroid once supported them with - to restore thyroidal T3/T4 balance and then feel better.
Others can't tolerate T4 and need to take T3 only - as you can live without T4 but you can't live without T3 :
Whilst others find they feel better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids, dried and ground down into tablets, referred to as grains and the original successful treatment for hypothyroidism used for over 100 years.
It is still early days for you, and it does take time to recover from major surgery and for the body to reset itself after loosing such a major instrumental piece of itself -
I would think you first need to try and find a dose of Levothyroxine that offers you some stability and please get your core strength vitamins and minerals run as no thyroid hormone replacement option works well until these core body building blocks are strong and solid.
hi Josie2, have you been prescribed Calcitriol (Active form of Vit D) and Calcium Carbonate supplements as part of your treatment. From my thyroidectomy this was as important as the levothyroxine but needs to be monitored far more frequently than the 6-8 weeks that T4 and TSH, PTH are monitored. Ideally every couple of weeks until calcium levels stabilised and parathyroids kick back in. However I didn’t have the neck swelling as you describe.
B12, Vitamin D 25 and ferritin levels were monitored constantly and also Parathyroid Hormone levels
Not had any supplements prescribed.
Would suggest you urgently get your GP to do a Serum Calcium Test to understand where you are at. Without the Active vit D you won’t be absorbing Calcium.
A prescription for at least 3 x 250ng of Calcitriol and probably the same of Colcalciferol ( Calcium Carbonate Tablets) would be my guess - probably higher on both initially. Really surprised this wasn’t part of your thyroidectomy procedure.
From the day of my op I was on 5/6 Calcitriol for about a week with 4 calcium tablets then down to 3 & 3 for a few months followed by drop to 2 x Calcitriol & 1 x Colcalciferol as they tried to get the parathyroids to kick back in making their own Calcitriol/Active vit D.
I had my TT back in 2015 but never had any trouble with swelling of the neck.
Did you have an experienced surgeon. He/She should have monitored you for calcium and Vit d. Did you have your parathyroids repositioned too.
You should keep on a steady dose it will help your body recover.
I had my thyroidectomy done by a surgeon at the Nuffield hospital. My calcium levels have been checked every time I’ve been to hospital with my swollen throat?
Hi
When I had a thyroidectomy several years ago my laryngeal nerve was, as the surgeon later put it, ‘nicked’. This resulted in a feeling of a lump in my throat when I swallowed and in breathing difficulty if I got excited (laughing became quite frightening!). It took several months for the feeling of a lump in my throat to resolve and my voice has never really recovered - I can no longer sing in tune and I can’t shout at all which my children were delighted with!
Hopefully you’ll be feeling better soon. Over the years I have found this site invaluable in getting sensible advice and on how to get better treatment when necessary.
My surgeon said thyroidectomy had gone fine, didn’t report any problems. The lump/swelling in my throat is just left from the middle of my throat but above my scar. It’s not constantly swollen but when it does I can actually feel my throat closing, my voice disappears and I find it hard to swallow. It’s actually extremely scary & I feel like I’m being choked.
What symptoms did the doctor cite re the laryngeal nerve damage?
Did they put a scope down your throat and see damage?
Is your ability to make any variety of sounds impacted? Has that ability changed since the surgery? Have you had any voice therapy?
To be honest I’ve been in A&E about 8 times regarding the swelling in my throat to the extent I can actually feel my throat closing. I get phlegm in my throat, can’t swallow, throat swells. I’ve had a camera up my nose & down my throat but only to the upper part of my throat. Never had any problems before surgery. I have rheumatoid arthritis and that has been ruled out as being a symptom. I had thyroidectomy in July & it’s now October. I’ve not left the house since August except for hospital appointments with husband because my throat swells so much I have to ice pack, take naproxen, use throat spray & piroxicam. Swelling comes and goes, firstly around once a week but this only started around 4 weeks after surgery. It’s now every day but since starting amitriptyline it’s not as bad. Everything has been ruled out by surgeon & A&E but my doctor now thinks it could be down to surgical error.
Total thyroidectomy 
Thyroidectomy
Thyroidectomy?
partial thyroidectomy 
