Substernal/Compressive Goiter advice/opinon/help

[Serisu]

Hi! I hope you are all well.

I was just wondering if anyone could offer any advice/opinions on my current thyroid situation.

In July I was diagnosed with a ‘severely overactive thyroid.’ I was put on Carbimazole but then my levels went too low so I was taken off the tablet.

during this time I was getting a lot of discomfort in my throat, constantly feeling like someone was pushing down on my throat with a lot of pressure, changes in my voice, trouble swallowing sometimes, a big fullness feeling in my throat. I went back to the doctor who expressed concern that I had a substernal goiter after feeling my throat and being unable to get behind my right side collar bone and feeling a lot of resistance. She referred me for a scan which was cancelled and I was sent to a consultant. He felt my neck and said he couldn’t feel a goiter but couldn’t say why the one side of my throat behind my collar bone can’t be pushed in. He said that he thought it was acid reflux and has put me on tablets despite not having any of the main symptoms of acid reflux or anything similar. He said that they could do a ct scan but he didn’t want to because ‘7/10 come back as abnormal’ so told me to wait for my endocrinology appointment so they could refer me back to him, which could take up to a year.

My parents, who were both nurses, and a family member who is in the medical profession are all doubtful that this is the case.

So I was just wondering if anyone had any similar experiences? Or if this was ‘normal’?

Can you have a substernal or compressive thyroid but not actively feel a lump in the throat because it’s growing inwards/downwards?

Are there any other reasons why I can’t get behind my collar bone on the one side and now occasionally on the other?

I’m going to speak with my normal GP Friday but I was just wondering if anyone had any similar experiences.

Thank you for taking the time to read, I’m sorry for waffling.

Take Care

[SlowDragon Administrator]

Suggest you get ultrasound sound scan privately now

thyroiduk.org/?s=Ultrasound+

In July I was diagnosed with a ‘severely overactive thyroid.’ I was put on Carbimazole but then my levels went too low so I was taken off the tablet.

How long since you stopped Carbimazole

You should have had TSI or Trab antibodies tested for HYPERthyoid autoimmune disease - called Graves’ disease before starting Carbimazole

And need TPO and TG antibodies tested for autoimmune HYPOthyoid disease- called Hashimoto’s

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms (as cells breakdown and release excess thyroid hormones) …. before becoming increasingly hypothyroid

request FULL thyroid and vitamin testing via GP including TPO and TG antibodies , TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 as well

Low vitamin levels are extremely common especially with autoimmune thyroid disease

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

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)

Essential to test vitamin D, folate, ferritin and B12

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

He said that he thought it was acid reflux and has put me on tablets despite

Most hypothyroid patients have LOW stomach acid (and this can result in acid reflux)

Omeprazole or other PPI can exacerbate this

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

How to test your stomach acid levels

healthygut.com/articles/3-t...

branchbasics.com/blogs/food...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Useful post and recipe book

healthunlocked.com/thyroidu...

But never assume you have low stomach acid

healthygut.com/4-common-bet...

Ppi like Omeprazole will lower vitamin levels even further

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

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...