ENT surgeon appointment preparation

[sunbee]

I would appreciate input from you knowledgeable people ahead of my appointment with ENT surgeon.

I have had a swollen right side/goitre for approx. 6 years. Recently, I've found pressure on my trachea makes me cough occasionally.

3 years ago, an ultrasound scan showed cysts/nodules on both sides, too many to count on the right side. I had a fine needle aspiration. I don't think anything ominous was found in the scan, I was diagnosed with thyroid nodular disease.

I did see an ENT surgeon after the scan. I told him I did not want a thyroid operation and he said they would check on my in a few years.

Tomorrow is the follow up ENT appointment.

I am so fed up with my thyroid and my debilitating health. The thought of having to live my life like this and merely exist for the next 20 years fills me with dread.

I struggle with fatigue, lack of energy, dizziness, forgetfulness, brain-fog, depression, weight gain, constipation (which comes an goes), back and hip aches, cold sensitive - so the usual hypothyroid symptoms.

I saw an Endo in October 2000, who advised I have "an autoimmune process in place." she started me on Levo 25mg. My doctor has increased dose to 75mg. I have found the increase in dose helps initially but I soon feel the awful symptoms return.

1. As my thyroid has "too many cysts/nodules to count" is there much working thyroid tissue? I understand cancer and breathing issues are reasons for a thyroidectomy.

- Are comprehensive tests done to decide if it is safe to leave the whole thyroid intact,

- How do they test if both sides are producing thyroid hormones?

2. Will I always have an auto-immune problem, if the whole thyroid is removed? e.g. Will the antibodies attack another area of my body and cause another autoimmune disease e.g. rheumatoid arthrytis, lupus etc?

My last 3 blood test results:

March 2022

TSH 2.87 mu/L 0.27 - 4.20mu/L

(Euthyroid. Note: FT4 should be requested for query pituitary function for monitoring treatment of hyperthyroidism and thyroxine dose changes.)

T4 17.2 pmol/L 12.00 - 22.00pmol/L

T3 not tested.

Serum folate 17.3 ug/L 3.90 - 26.80ug/L

B12 704 ng/L 197.00 - 771.00ng/L

Serum ferritin 113 ug/L 30.00 - 148.00ug/L

Vitamin D 25-OH - 181 nmol/L

September 2022

TSH 1.53 mu/L 0.27 - 4.20mu/L

T4 17 pmol/L 12.00 - 22.00pmol/L

T3 3.0 pmol/L 3.90 - 6.70pmol/L

no ferritin, B12, folate, or vitamin D not tested.

serum thyroid peroxidase 119 lu/mL <35.00iu/mL

September 2000

TSH 5.11 no range

FT4 13.00 no range

serum thyroid peroxidase 90 iu/mL <35.00iu/mL

Thank you for reading my long-winded post!

[PurpleNails Administrator]

hello sunbee welcome to forum

Looking at last test

TSH 5.11 no range

FT4 13.00 no range

serum thyroid peroxidase 90 iu/mL <35.00iu/mL

TPO is positive confirming autoimmune.

The TSH high & FT4 low by most ranges.  (aim is TSH 1 & FT4 upper part of range) You need an dose increase.  

Many find if adequately medicated the swelling on thyroid reduces. 

 Initially the dose tops up but then replaces failing thyroid levels it’s common for symptoms to start creeping back.

Obtain any previous scan report and pathology report.  There are sometimes little details notes which aren’t explained but can be helpful to know.

As my thyroid has "too many cysts/nodules to count" is there much working thyroid tissue? I understand cancer and breathing issues are reasons for a thyroidectomy.

There likely isn’t much working thyroid tissue - which is why replacement was needed.    If the issue is with size of thyroid causing compression surgery would be necessary even if function wasn’t as factor. 

 - Are comprehensive tests done to decide if it is safe to leave the whole thyroid intact.

That would be decided prior to surgery.   If dr have done biopsy and there’s an issue the entire thyroid is removed.  If for example there’s a nodule in 1 lobe, then surgeons will remove that lobe.  Sometimes residual thyroid tissue remains.    

How do they test if both sides are producing thyroid hormones?

It can be done by a “radioactive iodine uptake scan” - but it’s not a easy procedure and in your case I don’t think it is necessary to be assessed.  Your issue is the physical compression and as you have nodules throughout (as a bonus) - function likely reduced throughout there is no benefit in plotting the function of different part of thyroid. Surgically it wouldn’t be removed in parts.

 Will I always have an auto-immune problem, if the whole thyroid is removed? e.g. Will the antibodies attack another area of my body and cause another autoimmune disease e.g. rheumatoid arthrytis, lupus etc?

The thyroid is the victim of your immune system - the antibodies are cleaning up the debris of your thyroid which wouldn’t  normally be circulation out side of thyroid.  They are a result of condition not cause if it, so no those antibodies won’t start attacking elsewhere.

It’s possible to develop other autoimmune conditions. It is said having 1 autoimmune condition make you more likely to get others but having the thyroid removed or in place doesn’t alter this. 

Nutrients look good, but someone more knowledgeable will hopefully advise. 

Vitamin D 25-OH - 181 nmol/L. This is high in range? do you supplement? 

[sunbee in reply to PurpleNails]

thank you for replying PurpleNails.

Yes, I do take a D3 supplement. Stopped in summer, believing I'd get sunshine! haha Back on D3.

I take D3 4000iu combo with K2, zinc, selenium, krill oil, magnesium, ubiquinol, Thorn Basic B complex.

[SlowDragon Administrator]

when was dose levothyroxine increased to 75mcg

Which brand of levothyroxine are you currently taking

Do you always get same brand

Vitamins look good in March

Retest annually

TSH 1.53 mu/L 0.27 - 4.20mu/

LT4 17 pmol/L 12.00 - 22.00pmol/

LT3 3.0 pmol/L 3.90 - 6.70pmol/L

Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

FT4: 17 pmol/l (Range 12 - 22)

Ft4 only 50.00% through range

FT3: 3 pmol/l (Range 3.9 - 6.7)

Ft3 BELOW RANGE -32.14%

So under medicated and also really terrible conversion rate

Likely to need addition of T3 prescribed alongside levothyroxine

Are you currently on strictly gluten free diet or dairy free diet

That’s likely next step ……before trialing adding T3

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

[e-mail]

[sunbee in reply to SlowDragon]

Thank you SlowDragon for your reply.

Dose increased to 75mg in March 2022

Blood test done first thing in morning, last levo dose previous morning.

Levo brands not constant unfortunately.

I am gluten and dairy free, as much as possible. Not always unfortunately. 😐

I will email for details of a T3 friendly Endo in my area.

[SlowDragon Administrator in reply to sunbee]

75mcg is only one step up from starter dose

Approx how much do you weigh in kilo?

Guidelines on dose levothyroxine by weight is approx 1.6mcg levothyroxine per kilo of your weight per day

First step

Request 25mcg dose increase in levothyroxine

Also request GP specify named brand on prescription….assuming you have a preference?

New guidelines for GP if you find it difficult/impossible to change brands 

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

[sunbee in reply to SlowDragon]

hi SlowDragon

Approx how much do you weigh in kilo?

I weigh 71kg so I'm undermedicated according to your information!

Thank you so much for highlighting this!

[SlowDragon Administrator in reply to sunbee]

How long have you been left on just 75mcg

Get dose increase to 100mcg daily

However …initially suggest you increase slowly….75mcg and 100mcg alternate days

Which brand of levothyroxine is 75mcg dose?

See how you get on

After 6-8 weeks either retest …..

Or increase to 100mcg …..wait a further 6-8 weeks and then retest thyroid levels

Likely to need further increase in levothyroxine after this

Gluten free diet does need to be strictly gluten free to be effective

Dairy slightly less critical

[sunbee in reply to SlowDragon]

Thank you SlowDragon. Lots of info, I'll implement your advice.

[Hedgeree]

Hi sunbee,

This is my recent experience. I was diagnosed with a multinodular goitre in May this year. One of my nodules was quite big, deemed indeterminate then suspicious on a 2nd fine needle biopsy (FNA). So I had a diagnostic partial thyroidectomy (right lobe removed) as the nodule was too big to be removed on it's own.

The ENT surgeon had hoped that the remaining half of my thyroid would compensate but that didn't happen so I'm now on levo.

The only symptoms I had from the goitre itself was the feeling of a lump in my throat and like you I felt like there was pressure around my windpipe so very uncomfortable to try to lie down but that feeling has gone now. I could see it at the front of my neck but it wasn't hugely prominent.

At first I was hoping to have ablation but my nodule wasn't suitable. Also it seems in the USA they do further tests in situ to confirm any issues but from my understanding we've not got that here in the UK yet hence they do a diagnostic thyroidectomy (hope if I'm wrong someone will correct me)

I didn't want to have surgery but decided to go ahead due to the suspicious nature of my nodule. The surgeon was great and she rang me at home to answer questions that I had. Also I didn't have an iodine uptake scan. It wasn't suggested.

The ENT surgeon said my issues are possibly autoimmune but I'm not diagnosed. Post op my TSH jumped to above range and my FT4 has stayed below the range. I have the same hypothyroid symptoms as I had previously but hoping that eventually once I get levo dose sorted and vitamins optimized I will eventually feel well or at least better than I have felt for many years.

Good luck with your follow-up appointment.

Best wishes.

[sunbee in reply to Hedgeree]

hi Hedgeree, thank you for recounting your experience, not dissimilar to mine?

I'm hoping for a positive appointment tomorrow.

[JenniferW]

Hi Sunbee

I can't with your specific problems which sound complex, but can reassure you that a colleague of mine had his thyroid removed about a decade ago. He takes T4 and T3 and although it took a while to get the dose just right, he now leads a pretty normal life, playing five a side football and doing a job which is mentally demanding.

Best of luck with the appointment,

Jennifer

[sunbee in reply to JenniferW]

Thanks for your message JenniferW. Gosh, wouldn't it be wonderful for me to get back to my pre-thyroid activities?

I'm looking forward to a positive appointment tomorrow, perhaps leading to resolving my health problems?

[Litatamon]

,

Hi sunbee,

I have cut and copied my post from another thread, as it almost 3 am here & I doubt my brain can handle the typing!

-------

I had my goitre removed due to breathing & swallowing issues. I will say that I felt the issues daily but I had absolutely no clue how much I was suffering until it was removed. I immediately felt the difference, many differences. So I consider the surgery very successful.

I was content to just monitor and have needle biopsies every now and then - I had two of the biopsies and I felt like that procedure was no big deal at all. It was more the pre-thought. I had no interest in having a thyroidectomy.

The reason I changed my mind was twofold. The endocrinologist asked me to raise my arms above my head and lower my chin & talk. I could hardly breathe and whatever voice I could get out sounded like the devil. I was, What the heck? in that moment. And then just before that or after I almost drowned & I am a very strong and confident swimmer. I realized that that fun little moment was due to the goitre and I knew it was time.

Medication has not been smooth but regardless I consider the surgery a success, my surgeon did a great job. She is good with patients and skilled in her work.

And I had normal numbers yet out came a diseased thyroid. So ???? That was a surprise.

Sunbee, I inquired about ablation and was told two things by my surgeon. One, we don't even do it in Canada. And two, she has had patients who travelled to have it done and the nodules grew back again.

All the best with your choices. Even though medication has not been easy, I have zero regrets about the thyroidectomy.