Thyroidectomy.: Hi Everyone, This is my first... - Thyroid UK

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Thyroidectomy.

Citrine77 profile image
5 Replies

Hi Everyone,

This is my first post. I have been reading questions and answers from other members and unfortunately we all seem to be in the same boat, but lots of advice so thank you. My problem is that I had an almost total thyroidectomy - a small part was left behind because they could not remove it without causing a lot of problems. I have read that the thyroid can grow again and am worried mine is as; the problems I had with my goitre made food hard to swallow, things getting stuck in my throat and regurgitating and the same thing is happening again, I'm going to see a Dr next week about this, but wonder if you had any advice before I go.

Thanks

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SlowDragon profile image
SlowDragonAdministrator

How much Levothyroxine are you taking

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies retested since thyroidectomy

Also extremely helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

Ask GP for printed copy of results if you don't have them already. You are legally entitled to them

Being under replaced on Levothyroxine can cause acid reflux (food regurgitating) and tight throat sensation

So for full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodi also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you normally do your blood tests?

Yes thyroid can grow back as well

Citrine77 profile image
Citrine77 in reply to SlowDragon

Hi

I take 75mcg of levo for 5 days and then 100 for 2 days, this has been the result of changing it every three months for the past 4 years and had also been the best I had felt since I had the op. I do get printed copies of my results and the last lot about 5 months ago were "within range" as they say. My doctor usually does just T4 and TSH, he said he is no longer allowed to do T3, I'm not sure about the others, but I will take a copy of your reply with me and see if I can get them all done, if not, I shall get them done privately. Fortunately he does try to understand although like most docs he is not clued up on the thyroid.

Many thanks for the info. I'll let you know how I get on.

SlowDragon profile image
SlowDragonAdministrator in reply to Citrine77

So after Thyroidectomy TSH should be under one and FT4 towards top of range. Obviously also essential to test FT3 and vitamin levels

Many many patients have to get private tests in order to get to bottom of what problems are

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine. (Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box.

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many, otherwise we need high FT4 and suppressed TSH in order to have high enough FT3. Many thyroidectomy patients need addition of small dose of T3

rcpe.ac.uk/sites/default/fi...

Obviously due to current ridiculous price of T3, all the NHS medics are heavily pressurised into not prescribing & won't even suggest patients might need it

Citrine77 profile image
Citrine77 in reply to SlowDragon

Hi SlowDragon

Here I am a month later with test results, but unfortunately not all those I asked for.

Serum vitamin B12 347 mgl (150 - 99999) do you think that is a misprint or are the B12's really low.

Serum Folate level 5.4 (4.2 - 19.8)

they have only done TSH and T4 no T3 or antibodies

TSH 1.18 (.025 - 4)

T4 21 pmol (11-22)

My last results from April were 1.83 and 21 pmol respectively.

Also had Renal and calcium levels checked, they look around average

Cholesterol is higher than its ever been, but not over the top

Sugars are advised as going into Stage 2 diabetes, but previous levels before op had always been very low. Both of these results I believe are part of the unbalanced thyroid. They haven't done the other tests you advised.

I have an appointment with the Dr on Thursday to go over this, any suggestion on how to handle this would be appreciated.

Many thanks

Kindest regards

SlowDragon profile image
SlowDragonAdministrator in reply to Citrine77

Just testing TSH and FT4 is completely inadequate. You need FT3 tested

Plus vitamin D and ferritin

B12 and folate are low. This suggests under medicated for thyroid

You might benefit from supplementing a daily good quality vitamin B complex, one with folate in

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

High cholesterol is also an indicator of being under medicated.

nhs.uk/conditions/statins/c...

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take early morning on waking, but it may be more convenient and possibly more effective taken at bedtime

Levothyroxine should be four hours minimum away from magnesium, vitamin D, HRT, iron or calcium (including calcium rich foods)

See point 8 foods to avoid

beta.nhs.uk/medicines/levot...

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription. Many patients do not get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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