Half a Thyroid better than none?: I have had Long... - Thyroid UK

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Half a Thyroid better than none?

Simonron profile image
12 Replies

I have had Long Covid since March 2020. Investigations showed the right half of my Thyroid was enlarged. I was told all thyroid indicators were fine and that my disabling LC symptoms had nothing to do with my thyroid.

Eventually, four years later the stars aligned for me to have an operation. That was 2 and a half weeks ago.

How long could it take for me to notice changes due to only having a half thyroid in operation? I have asked many times and had no answer !

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Simonron
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12 Replies
bantam12 profile image
bantam12

I had half my thyroid removed when I was in my teens and the remaining half did what it had to do perfectly well for 30+ years, I had no problems at all.

Hedgeree profile image
Hedgeree

Hi Simonron,

By changes do you mean improvement in your symptoms?

Have you blood test results from before and after your hemithyroidectomy?

Were you prescribed thyroid hormones after your operation?

Simonron profile image
Simonron in reply toHedgeree

I've had dozens of blood tests, but despite specifically asking all I've been told is that my thyroid levels are within normal range. I was almost hoping my LC symptoms would worsen thus indicating that my LC was a Thyroid issue after years of being told it wasn't.

I have been very shaken up since the op but can't establish any relevant changes - hence my question. I have a followuo F2F in a few days.

Hedgeree profile image
Hedgeree in reply toSimonron

If you can post your most recent blood test results other member's can comment on them for you.

Being told all are within normal range is too vague as the ranges are very wide; your results could be at the bottom of the range and so you could still be symptomatic.

I had a hemithyroidectomy in 2022 and it took many months for me to recover after the op; I felt like I'd been kicked in the neck. It is still early days and not long after your operation.

Were you prescribed levothyroxine?

Simonron profile image
Simonron in reply toHedgeree

I've not had any followup as yet, nothing proscribed initially. I don't have the actual test results, but, I'm told I am in the OK region of the low end. I really pushed that point several times but it had no effect. They are far more concerned about a cancer than LC symptoms.

I think it is all down to Covid myself.

Hedgeree profile image
Hedgeree in reply toSimonron

When you have your follow up appointment get a print out of your results (you are legally entitled, they are yours). I had my follow up with an endo nurse and she provided the results for me.

Prior to my op I had been continually dismissed by my GP despite having hypothyroid symptoms with a bottom and below range FT4 for many many years. After my op the nurse prescribed levothyroxine for tiredness at my follow up appointment.

Simonron profile image
Simonron in reply toHedgeree

I really don't think I have cancer. I only agreed to the op in the hope that it would force action on my hormone levels. We shall see !

SlowDragon profile image
SlowDragonAdministrator

all I've been told is that my thyroid levels are within normal range.

Far too often only TSH tested which is completely inadequate

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Get hold of all tests done since Covid

If not had vitamin levels tested get GP to do them now

Thyroid levels should be retested 6-8 weeks after your operation

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, 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)

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)

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

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Post all about what time of day to test

healthunlocked.com/thyroidu...

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

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...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

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

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

Simonron profile image
Simonron in reply toSlowDragon

Wow. Many thanks. My brain fog cuts in very quickly at times like these. I may have the test results somewhere but ...

Hedgeree profile image
Hedgeree

Meant to add; the endo surgeon told me she had seen many patients in her clinic who'd had Covid and their FT3 levels were affected afterwards and many took time to improve their levels some not at all. She mentioned this as I got Covid whilst I was just starting levo and was very slowly titrating up with my dose of hormones.

Simonron profile image
Simonron

Sadly my surgery is under a lot of stress and I have to really fight for support. Most of the time I don't get any until it's too late to be helpful. That's one reason my story has lasted four years so far.

SlowDragon profile image
SlowDragonAdministrator in reply toSimonron

So first step find test results and ranges

Add them here

ALWAYS test thyroid early morning for highest TSH

See exactly what vitamins have been tested

Often nothing relevant been tested

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