unsure whether to complain or wait

[pattycake350]

Hi, just after some advice really on whether I need to put a complaint in or if I should just wait. Apologies for the long post.

I have a left sided thyroid lump/swelling, I first noticed it last summer but thought that it was a lymph node and expected it to go away and forgot about it.

In November, I had my TSH checked for my lithium monitoring, which was 0.01, it was at this point I realised I still had the lump and it was bigger, and mentioned it to my gp. This gp sent an ent referral, I was contacted by ent and told it would be a 10 month wait.

I re-contacted my gp to express my concern over this, and I was referred to endocrine and seen in Jan this year.

At my endocrine appointment, she felt the lump and said it felt like multiple nodules, and said it is probably a multinodular goiter with subclinical hyperthyroidism, gave me a small prescription of carbimazole and told me to come back in 3 months. She said I might have a scan at some point.

After this appt, I received the summary letter of this appointment, which hadn’t mentioned the lump at all, only my bloods, which concerned me.

I called up and requested to be seen again as the lump is continuing to grow, saw the same clinician the following week who said that the lump does feel bigger and uniform but not to worry. I asked if I could have some form of imaging done, and she eventually agreed to put a routine referral for a thyroid ultrasound, and said it could take a few months.

She said that my recent bloods showed higher infection markers and said I probably just have a viral throat infection, even though I’ve had these symptoms for months.

I understand that only a small percentage of thyroid lumps are malignant, however I also know that the NHS guidelines state that any new neck or thyroid lump should have an ultrasound within 2 weeks. I would rather rule out anything sinister and then not have to worry about it.

Also just to note symptom wise, I have:

-Excessive sweating

-Occasional drenching night sweats

-Hoarse voice

-Breathless when walking

-Tremor

-Choking on food

-Wheezing when lying down

-Extreme fatigue

-Hair loss (mostly my head and eyebrows)

-Palpitations and fast HR

-Continuous weight gain despite eating in a calorie deficit for months

-Diarrhoea and nausea

I also have low Vit D and low Folate

I should probably mention the lump feels like a ping pong ball above my collarbone, with swelling around it.

So yeah, my question is, do I just wait a few months for this ultrasound, or do I make a complaint to push for the scan sooner and ask why I’m not being treated on the 2ww pathway as per nhs guidelines?

I also understand that you can’t give me actual health advice, I’m just after opinions and support really.

Thanks,

P x

[PurpleNails Administrator]

Welcome to forum.

How much carbimazole do you currently take?

Extremely important levels are regularly tested when starting carbimazole. 6 weekly rechecks & dose adjustment is standard.

Subclinical hyper means your thyroid levels are in range but the pituitary signal is low. Your thyroid isn’t being stimulated by brain, but your levels are still ok. It does not always require antithyroid treatment, as treatment lowers in range levels. That said you do sound like you have high thyroid symptoms. Has carbimazole helped?

You may have an autoimmune issue but doctors are assuming you have a toxic nodule. This can not be confirmed via examination. Ultrasound can detect nodules but you need an uptake scan to confirm a hot or toxic nodule.

Endocrinology will only be looking a hormone levels, ENT look at physical lumps in neck. It’s ENT you / your doctor needs to chase up for a consult ultrasound on neck. Lumps over 1cm are usually considered for fine need aspiration. but hospitals / operators have varying opinions & sometimes at appointments say they are not worried, but will proceed if you say you are worried and keen to be checked. So be prepared to push.

Get copies of all blood test & scan results.

Drs do not always complete full test, and will overlook comments as irrelevant. When they are not.

Many arrange private at home fingerprick test to get a full picture.

There’s also option of private ultrasound.

thyroiduk.org/testing/priva...

How are your low folate / vitamin D being treated?

[pennyannie]

Hello Pattycake:

I don't know if you are aware of the following - so just start reading around if not :

verywellhealth.com/lithium-...

pmc.ncbi.nlm.nih.gov/articl...

[Obsdian]

My anxiety would be getting the best of me if I was in this situation. I would be insisting on the appropriate tests and show them the back up info you are basing it on.