Multiple nodules in thyroid with largest 6cm+ help!

[Twunty]

Hi, so I have had an ultrasound and have 1 small nodule in right of thyroid but multiple in left with largest measuring over 6cm!! (Yes 6cm!)They say all seem benign and tsh is normal and only slightly elevated white blood count: MCH (32.3), abs lymph (3.01) and abs eosin (0.59) so refuse other blood tests. It's pushing my trachea way off and I can no longer sleep on my back as wake gurgling, lots of other issues too, sweats, mind fog, hoarseness, can't breathe through left nostril, numb left arm, anxiety, weight loss, heart palpitations, rash on back of calf but they've said they'll just leave it?? Am I mad at thinking what???? Thanks for reading my lovely people.

[jrbarnes]

See the link below for less invasive treatments. I had thermal ablation for a uterine fibroid. It was so non invasive I had no pain and was back to work in a few days. They've also been using this for thyroid nodules. You may want to look into it. I had a rare benign hurthle cell adenoma removed from my thyroid because they couldn't determine if it was cancer. It was the size of a golf ball and choking me but it was also affecting my thyroid hormone. You might have to be more vocal about your discomfort to your doctor.

btf-thyroid.org/less-invasi...

[Litatamon in reply to jrbarnes]

I am sure there are many successful ablations and it is great information, simply want to add that when I inquired about it with my surgeon she told me three things -

*They don't do it here (Canada) due to cost, so might be the same in some other countries

*They have to be completely sure the nodule is not cancerous & a biopsy on a large module can of course come back as benign but the size always makes that not written in stone

* And she has had patients that have travelled to other places, had it done and the modules grew back. And one where it grew back larger.

Once again adding for information only, looking into ablation is smart.

[jrbarnes in reply to Litatamon]

This is very true. I paid out of pocket for thermal ablation and it was quite expensive. My insurance provider wouldn't cover it. Afterwards, I took part in a 3 year study for ablation, which will hopefully make this procedure more available and cost effective for people.

[Litatamon in reply to jrbarnes]

Hopefully your work does help, I probably would have rolled the dice on it - despite my surgeon's personal thoughts.

[jrbarnes in reply to Litatamon]

I had the thermal ablation done on a grape size fibroid bulging for my uterus. The only other option was a myomectomy which meant they would have to cut into my uterus. The fibroid was causing extreme pain but it seemed ridiculous to let someone cut into my uterus when I could just have a simple ablation procedure done. Unfortunately using ablation on uterine fibroids is considered "new" even though it's been successfully used by doctors for 10 years. having ablation saved my uterus. Unfortunately the hurthle cell adenoma on my thyroid was a different story and I lost half my thyroid. If I just had a nodule that was benign I would definitely had looked into ablation.

[HowNowWhatNow in reply to jrbarnes]

Does thyroid nodule ablation use the same burning away process they’ve started successfully using, a few years, for tonsillectomies?

My daughter had her tonsils removed by ablation.

One of the major reasons for using this technique on the tonsils is that it carries a much lower risk for haemorrhage afterwards. Is that similar for thyroid?

[jrbarnes in reply to HowNowWhatNow]

Radiofrequency thermal ablation shrinks nodules and fibroids with heat. This sounds very different from ablation on tonsils.

[HowNowWhatNow in reply to jrbarnes]

completely different - if so - thank you

[PurpleNails Administrator]

6cm is quite large.  

it sounds as if it’s causing issues with breathing, swallowing & voice, which ENT (ear nose throat) need to access.

Usually nodules over 1cm are given a fine need aspiration but not always.  

I was found to have a nodule just over 5cm. I had slight swallowing issues.  it was aspirated was found to be  benign but the thyroid funtion results were not processed and this was missed but staff who noted other results, which were complete were normal and so no further action was required.

In my case the TSH was low and thyroid levels high.

If your TSH is top of range it’s a pituitary signal that your thyroid isn’t keeping up with body’s needs and the thyroid hormone FT4 & FT3 are low.  Arrange full thyroid function. Ideally with key nutrients & thyroid antibodies.

Also ask for a copy of the scan report you have had, often there are little details about the health of your thyroid which are not fully communicated.

It’s soon soon to be thinking about other sorts of treatment.  If you do need replacement there’s a significant change any neck swelling with considerably reduce with adequate replacement levels.

If function isn’t a issue then the physical issue it causes needs to be addressed. By description of it though, you are have thyroid funtion symtoms.

[Twunty in reply to PurpleNails]

Thanks for your reply. Yes I sometimes feel like something is stuck in my throat but not always and can no longer sleep on my back as snore/gurgle which is new. TSH was normal but I think there's more bloods that should be taken so I'm going to go private for them I think.

[PurpleNails Administrator in reply to Twunty]

Often private is fastest way to progress.

Medichecks is good. Fingerprick draw manageble or extra fee for venous draw.

Thyroid Advanced option includes nutrients & TPO & TG antibodies.

Have you read on forum about best time to test?

[SlowDragon Administrator]

Request/insist on full thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test both thyroid antibodies and vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

monitormyhealth.org.uk/full...

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

[Twunty in reply to SlowDragon]

Oh wow, thankyou. I'm in Ireland but can travel to north for tests if necessary, this is very useful so thanks again

[SlowDragon Administrator]

RoI test option…..perhaps more expensive and no iron or ferritin test available

letsgetchecked.ie/home-thyr...

letsgetchecked.ie/home-esse...

[Litatamon]

Just want to let you know that I had a few biopsies (benign) but then had a total thyroidectomy due to choking and breathing issues (especially as you described in sleep - I had multinodular like you but two were little buggers due to their size and placement). All my levels were normal like yours, but out popped a completely diseased thyroid. So don't assume it is not diseased, even without labs to show it.

[blondy168 in reply to Litatamon]

same…I had issues starting where I could feel a lump when I swallowed. My largest nodule was 2.5cm, it was cancerous and I had a total Thyroidectomy. All thyroid labs were normal.

[Litatamon]

Also, here is the physical test that caused me to change my viewpoint.

Endocrinologist had me raise my arms above my head and lower my chin. I didn't know what she was doing when asked. I then knew in seconds, I could not talk (whatever I could get out sounded like the devil) and could not breathe.

The same summer, just before that, I came very close to drowning.

It was enough.

[Batty1]

Have you had a fine needle biopsy? If not then they can’t say it’s benign I think it’s so irresponsible for doctors to ignore thyroid nodules this is exactly what happens to me 6 years ago they ignore, ignore, ignore until my world crashed and then I was diagnosed with thyroid cancer !

[Litatamon in reply to Batty1]

How frustrating Batty & so sorry to hear. All the best to you.And even when a large module is benign from a biopsy, they can't be definitive. They can be relatively sure of course due to composition, but not definitive.

[Gary1310]

Had left Thyroid removed after years of similar problems. Told I had a benign goiter I choked while out for dinner on two occasions…..could not breath. Decided that I needed help….called Marshfield Clinic in Marshfield Wisconsin. Saw an Endocrinologist….the XRay was weird..I wanted surgery to remove the nodal…when they went in they found a huge nodual growing around and behind my Tracheae and about chocking me to death.