Hemithyroidectomy : Hi everyone, sorry this may... - Thyroid UK

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Hemithyroidectomy

Bexlr profile image
8 Replies

Hi everyone, sorry this may be a bit long . . .I had in incidental finding of a 'tumour' in my thyroid after having an MRI for an unrelated issue in July 2023. I had no symptoms at all and could not see or feel any lump/goiter.

I was sent to Endocrinology in October 2023 where I had an ultrasound followed by biopsy. The nodule was solid with internal vascularity. I returned a week later for the results but the biopsy results were inconclusive due to too much blood in the sample. The Dr was very concerned by the ultrasound though so he strongly recommended I went for a diagnostic hemithyroidectomy of the right lobe to rule out thyroid cancer.

November 2023, I went into hospital for surgery. Surgery went well and I was discharged the following day. 12 days post surgery, I had a follow up appointment with my surgeon, my incision was healing nicely and he told me that the pathology results were that the tumour was a benign follicular adenoma. They also discovered background autoimmune thyroiditis which could put me at high risk of hypothyroidism.

Here I am now at 12 weeks post hemithyroidectomy, feeling pretty rubbish, constantly exhausted, my anxiety has hit the roof and I can tick off most of the hypothyroid symptoms. My TSH has risen from 1.37 pre-surgery to 3.99, I now have half a thyroid and autoimmune thyroiditis in the remaining left lobe, yet my GP is not interested as all my bloods are within range with the exception of Tissue Transglutaminase IgA immunoglobulin A level which is 4.25 g/L (range is 0.8 - 2.8)

Just feeling fed up and need advice from anyone who understands.

Thank you for letting me waffle on 🙃

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Bexlr
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Bexlr profile image
Bexlr

Just wanted to add my most recent blood test results done by my GP:TSH: 3.99 (0.35-4.5)

fT4: 12.3 (11.0-24.0)

fT3: 5.8 (3.9-6.8)

CRP: 1 (0-5)

Folate: 5.06 (3-20)

B12: 253 (180-2000)

Vit D: 43.5 (25-50)

Ferritin: 57 (13.0-150)

🙂

Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

What time of day was your blood test taken? Highest TSH is at 9am or earlier, it varies throughout the day.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)?

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day.

Your vitamin results are pretty poor and working to get these more OPTIMAL will really help you feel a bit better.

What supplements are you taking?

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150.grassrootshealth.net/projec...

Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc

Link with ideas for dietary iron:

dailyiron.net/https://three...

B12 is terrible.

Are you vegan or vegetarian? If not:

B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...

If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.

If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.

cytoplan.co.uk/vitamin-b12-...

amazon.co.uk/Better-You-Boo...

The B complex will help your folate as well which is too low.

Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

helvella.blogspot.com/p/hel...

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

Bexlr profile image
Bexlr in reply to Jaydee1507

Thank you Jaydee for your reply.

My blood tests were done around 9am and I am not vegan or vegetarian and I eat a healthy varied diet, however I do take Pregabalin for neuropathic pain which I believe can reduce the amount of folate or make it harder to absorb.

I do have an appointment with my GP coming up to discuss my results so I shall mention B12 and pernicious anaemia.

I'm frustrated that I feel more unwell since having surgery for something that I had no symptoms of or awareness that there was an issue.

Bex

SlowDragon profile image
SlowDragonAdministrator

Request new thyroid test in another 6-8 weeks

Meanwhile working on improving low vitamin levels

Vitamin levels drop when hypothyroid, and low vitamin levels tend to lower TSH (all GP is incorrectly considering)

Only add one vitamin supplement at a time and then wait 10-14 days to assess before adding another

Start with Vitamin D, followed by magnesium

Meanwhile get GP to test for Pernicious Anaemia BEFORE starting on any B12 or vitamin B complex

Meanwhile significantly increase iron rich foods in your diet to help increase ferritin

Low vitamin D

GP should prescribe 1600iu everyday for 6 months

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Suggest you consider self supplementing 2000iu or 3000iu per day

Retest in 2-3 months

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

How long have you had neuropathic pain

B12 often improves symptoms

dynamichealth.je/2022/08/25...

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

A week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Bexlr profile image
Bexlr in reply to SlowDragon

Thank you so much for all this info, I have a lot of bedtime reading to do!I've had neuropathic pain for around 18 months, I have a herniating disc at C6/C7 which is bilaterally compressing the nerves causing Cervical Radiculopathy pain in my arms. It was the MRI for this issue that discovered my thyroid issue leading very quickly to Hemithyroidectomy surgery.

Now they've removed half my thyroid and told me they found autoimmune thyroiditis which could end up with me becoming hypothyroid but I've been given no further advice or help!

RuthNelson profile image
RuthNelson

Hi Bex,

I have no helpful medical advice to provide, unlike others on this great forum, but have a very similar story to your own, having had a hemithyroidectomy before Xmas with no previous symptoms, and am now frustrated by not feeling as well as I previously did. I have also been discovered to have Hashimotos.

Can I ask what your main symptoms are? I have been suffering with episodes of tingling all over coupled with a feeling of panic/breathlessness, plus increased anxiety levels. Tiredness levels have increased but I’m not sleeping very well.

I am about to have my follow-up blood tests in the next few days.

Wishing you all the best, and hoping you get some swift answers.

Bexlr profile image
Bexlr in reply to RuthNelson

Hi Ruth,

Sorry you are having a rubbish time of things too.

I have a lot of nerve issues anyway and have lots of burning/tingling/numbness in my arms, hands and fingers so I don't know whether this is connected to my existing issues or has been made worse by my recent hemithyroidectomy.

I'm exhausted, have weight gain, dry skin, anxious, have palpitations on and off...

I've got a face to face appointment with my GP on Friday. She thinks I'm overwhelmed and possibly experiencing perimenopause symptoms, however I feel like I have to keep reminding everyone that I've had half my thyroid removed and all these symptoms began a few weeks after surgery and the discovery of autoimmune thyroiditis in the pathology report was just the cherry on top 🙄 My remaining left lobe is not very happy and is letting my body know that very well!

I've now been signed off by the surgeon as my incision has healed well, but just been left in the dark as to what to do now other than keeping getting thyroid function blood tests through my GP and see how things go.

Wishing you all the best with your bloods and your hemithyroidectomy recovery

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