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 🙃
Written by
Bexlr
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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
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.
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.
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.
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
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
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
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!
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.
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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