Carbimazole side effects: Salivary gland enlargement.

[Coco_5]

Hi,

Has anyone with Graves Disease experienced salivary gland discomfort/enlargement? I’ve been on Carbimazole since October 2021 and have read that this can be a side effect of Carbimazole. I’ve felt discomfort in the areas of all my salivary glands since June 2022. They also feel a bit bigger than normal.

Thanks.

[PurpleNails Administrator]

Yes, I have had this issue.

I have low dose carbimazole for a toxic nodule (no autoimmune)

I since learned salivary gland issues are a side affect of Carbimazole after rereading a revised patient leaflet information.

The doctors & experts did not seem to know this and never mentioned it.

After ENT consult had scan and i was simply told was an inflamed submandibular gland. No sign of blockage, infection or stones.

It has faded now & hasn’t caused saliva issues.

Had 4 appointments in all and phone consults as well, with no treatment suggested, no cause suggested, so it was quite a waste of time.

I was even called back for an final scan so a trainee could practice on me.

I should have realised when they discharged then sent me a scan appointment. They probably thought this lady had lots of weird neck stuff let’s get her back. I was not impressed.

[Coco_5 in reply to PurpleNails]

Thank you for sharing! It’s reassuring to hear others’ experiences. Glad you got checked and it resolved.

[PurpleNails Administrator in reply to Coco_5]

I found my endo said see GP about everything. So hopefully your endo will be more helpful.

It wasn’t until later I knew it was a salivary gland & it wasn’t until after I was discharged I put 2 & 2 together with carbimazole. So you’re doing right by getting it checked.

Looking at your bio you had a really low starting dose & quick maintenance dose with carbimazole.

Are you certain doctors confirmed you have Graves & not transient hyper from autoimmune thyroiditis.

We see quite a few example of this as doctors base treatment on low TSH.

Do you have copies of results? You are legally entitled to copies or in some areas you can set up online access.

For full test you are looking for :

TSH - Thyroid stimulating hormone (pituitary signaller to thyroid *not reliable*)

FT4 - free thyroxine (thyroid hormone)

FT3 - free triiodothyronine (thyroid hormone)

TPOab - Thyroid Peroxidase antibodies (autoimmune marker)

TGab - Thyroglobulin antibodies (autoimmune marker)

TSI - Thyroid-Stimulating Immunoglobulin *if graves suspected*

TRab - TSH receptor antibodies - (measures stimulating, neural & blocking antibodies) *if graves suspected*

If Graves’ disease is suspected this MUST be confirmed with positive TSI & or TRab

Also Important to test.

Folate

Ferritin

B12

Vitamin D

Any any results you have with ranges. Range vary between labs to must be obtained. Ask for printed copies - not hand written or verbal (could be inaccurate)

Gluten issue often issue with Graves any stomach issues?

Eye issues can occur with thyroid issues especially Graves. Were you made aware of this?

[Coco_5 in reply to PurpleNails]

Hi,

Thanks for your concern and for the information.

Graves was confirmed through TRAb testing. The level was 2.2 at diagnosis and is now 0.71.

I do get copies of all my results, thankfully, and these also go to my GP.

I was made aware of eye issues and I did have puffy, ‘scratchy’ eyes at diagnosis which improved with hypermellose eye drops and when I became euthyroid.

I do have some abdominal/stomach issues-discomfort/bloating etc so I’ll look into gluten issues-I wasn’t aware of this. Thanks!

[PurpleNails Administrator in reply to Coco_5]

Firstly while still on normal diet get gluten sensitivity blood test done this will rule out gluten allergy (coeliac).

If result is negative still consider trialing strictly gluten free diet to see if there is an intolerance (which a test would not detect). If after a few months or so no improvement try to reintroduce.

If GP unhelpful and refuses test, this test recommended (requires spot of blood) in home kit.

lloydspharmacy.com/products...

If positive you have a strong argument for GP to repeat unless GP accepts private result. (Depends on GP).

[Coco_5 in reply to PurpleNails]

Thank you. I am due to see my GP next week and will ask for a coeliac screen.Best wishes

[helvella Administrator]

You are right that swelling of salivary (and other) glands is a known side effect.

If I were you, I would follow the advice in the Patient Information Leaflet and contact your doctor. The impression is that this specific issue is not that significant and might sort itself out. But I'd much rather you were seen and appropriate blood tests could be done to check for white blood cells, etc. I'd not feel comfortable not urging you to do that.

[Coco_5 in reply to helvella]

Thank you! Yes, I agree - I have contacted my endocrinologist for a check up. Thanks for the support.

[Doris11]

Hi there my cousin has been diagnosed with Graves’ disease and struggles with her swallowing x