Newbie Post - Partial thyroid removal and B12 link - Thyroid UK

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Newbie Post - Partial thyroid removal and B12 link

PointOfReference profile image
9 Replies

Hi everyone. Hope you're all keeping as well as you can.

I was curious to understand anyone else's experience of a partial thyroidectomy and any subsequent effects from it?

In April I discovered I was severely B12 deficient but the signs had been there for at least 18 months. But in August 2020 I had half of my thyroid surgically removed following the discovery of an indeterminant nodule as part of a check up for the removal of a benign parotid gland tumor. So they took both tumours at the same time.

With the fast progress of B12d in April, I understood it's often the case that the thyroid is affected or could have contributed in some way.

My question is - what is the best way to get your thyroid checked? If I get a private test like medichecks, will I still need to go back to my GP?

Clueless to how this works so appreciate any help!

Many thanks

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PointOfReference
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SlowDragon profile image
SlowDragonAdministrator

Have you been diagnosed with Pernicious Anaemia or “just” low B12

Are you currently taking B12 sublingual lozenges or B12 injections

Being hypothyroid frequently causes low stomach acid this leads to poor nutrient absorption and low vitamin levels as direct result

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Nodules often occur with Hashimoto’s

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

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 thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies 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/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Come back with new post once you get results

Members can advise on next steps

PointOfReference profile image
PointOfReference in reply to SlowDragon

This is so helpful, thank you.

I think I might do the NHS private test. I think this could give me some sway with the GPs if there's cause for concern.

I highly doubt they'll test my thyroid in a follow up to the B12 folate and full bloods if I request it now.

Unfortunately the FBC folate ferritin B12 testing got skewed by my over zealousness and impatience to supplement with sublingual liquid before the test. Naïvely I thought a little wouldn't hurt. I also matched it to my low meat/semi-vegetarian diet.

So im undiagnosed for B12 as the testing was normal but its clear Ive had B12d and am self medicating. Sublingual liquid does work for me but Im also on injections.

Ill come back with the results

Many thanks indeed

Localhero profile image
Localhero

Are you on thyroid medication and/or is your GP not checking your thyroid levels regularly after surgery?

If you’re not being monitored by the NHS, you could go and insist with your GP that you are.

If you want to monitor it yourself, you can do a private test as you’ve suggested. It’s entirely up to you whether you choose to share those results with your doctor or not. Hypothetically, they’d be happy you’ve done them and include them in their records. However my own experience is that they completely discounted them.

Whatever you do, get a full evaluation including TSH, FT4, FT3, thyroid antibodies, Vit D, B12, Ferritin and Folate.

PointOfReference profile image
PointOfReference in reply to Localhero

Many thanks for your reply.

No medication or active check ups planned for thyroid. At my 6 month review after the op I asked about it and was referred to my GP 'if I showed symptoms'. Not sure what theyd be.

By that point I was mid-test for B12, folate, ferritin, fbc anyway as I had severe B12d symptoms.

For the thyroid Drs seemed confident Id be OK with half but I want to be sure.

As Ive already done the b12 testing Im not sure if theyd entertain a second test soon after,?

Perhaps its worth a try

Localhero profile image
Localhero in reply to PointOfReference

I’d say it’s worth a try. If they say no, you can always do your own test. Either way, if you want folks here to look at your results, put them on a new post.

Good luck!😊

ollygizzy profile image
ollygizzy in reply to PointOfReference

I had thyroid cancer in 1999. They didn’t remove thyroid but blasted me with radiation and chemo. I would think your thyroid is not working from partial removal, so I would think T3 and T4 will be needed. I started on T4, I was always ill. I was tired, body hurt, irritable and those hot and cold sweats. I switched to Armor about a year ago and was improving slowly but now it’s gone wacky. I think Armor changed something

PointOfReference profile image
PointOfReference

I finally have the blood work results for Thyroid so would really appreciate any advice:

Serum total 25-OH vit D level - (JYH) - Normal -

Serum total 25-OH vit D level 63 nmol/L

Deficient if < 25 nmol/L

Insufficient if 25 - 75 nmol/L

Possible Toxicity if > 250 nmol/L

! Thyroid function test - (JYH) - No action required

! Serum TSH level 4.27 mIU/L 0.27 - 4.20mIU/L

Serum free T4 level 18.5 pmol/L 12.00 - 22.00pmol/L

! B12/folate level - (JYH) - No action required

! Serum vitamin B12 >2000 pg/mL 197.00 - 771.00pg/mL

Serum folate >20.0 ng/mL 2.90 - 26.80ng/mL

Full blood count - FBC - (Annalize) - Normal - No action required

Total white cell count 9.48 x10^9/L 3.00 - 10.00x10^9/L

Red blood cell (RBC) count 4.83 x10^12/L 4.40 - 5.80x10^12/L

Haemoglobin estimation 153 g/L 130.00 - 170.00g/L

Haematocrit 0.451 L/L 0.37 - 0.50L/L

Mean corpuscular volume (MCV) 93.4 fL 80.00 - 99.00fL

Mean corpusc. haemoglobin(MCH) 31.7 pg 27.00 - 33.50pg

Mean corpusc. Hb. conc. (MCHC) 339 g/L 320.00 - 360.00g/L

Red blood cell distribut width 12.2 % 11.50 - 15.00%

Platelet count 291 x10^9/L 150.00 - 400.00x10^9/L

Mean platelet volume 9.8 fL 7.00 - 13.00fL

Bear in mind I have been injecting large amounts of B12 hence the 2000+

Serum TSH is over the range but apparently there's not action required?

any help appreciated!

Thanks

SlowDragon profile image
SlowDragonAdministrator in reply to PointOfReference

Suggest you write this reply as new post……and post it in morning

With link to this post too

SlowDragon profile image
SlowDragonAdministrator in reply to PointOfReference

You will need 2 thyroid tests with TSH over 5

Was test done as early as possible in morning before eating or drinking anything other than water

No Ft3 result

Have you had thyroid antibodies tested

No ferritin result either

Vitamin D needs improving to at least around 80nmol

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