Advice please, 2 years after Thyroidectomy

[ginger-rose]

Hello, i am looking for some advice.

this is my first time posting, i have come across this page a couple of months ago, and i have gained a lot of knowledge about the Thyroid.

In 2016 i had half Thyroid removed due to a very large nodule on my right side, and in May 2021 i had left side removed due to several benign nodules.

since Thyroidectomy in May 2021 i have been taking levothyroxine 100mcg.

I thought TSH was the important figure but as i have found on this page, T3 and T4 are the important hormone figures. the Doctor would just tell me the blood test result - was fine. and only ever tested TSH.

I have been really struggling with how i am sensitive to the cold, my hands and feet get very cold and sometimes i feel shivering. my fingers get numb and tingling sensation, pale hands, blue colour. sometimes in places where i am not feeling cold but i still get numb feeling... and sometimes i overheat and get sweaty.

i feel like my hormones are all over the place. sometimes i feel out of place, a bit lost, forgetful and doubtful, tired for no reason. Sometimes i wake up upset for no reason ! feeling grumpy and sometimes i feel really emotional, wanting hugs and cry.

but since last summer i have been focusing on my IBS and getting to the bottom of it ( fodmap diet has helped ) and with the GPs being really busy i have been ignoring my feelings/symptoms.

come February this year i was feeling extremely low and as my annual thyroid test was due, i decided to book an appointment with my GP to go through my concerns ( feeling cold, numbness, mixed emotions, anxious, not sleeping well) i had to wait 1 month for my appointment. The Doctor decided to take my blood sample there, and i said to him i already had breakfast and coffee, as this was around 11 am. He said it was fine. these are the results.

TSH 0.13 (0.27-4.2)

T4 24 (12-22)

Serum Ferritin 52 (30-148)

Serum Vitamin B12 469 (197-771)

Serum Folate 6.1 ( 3.9-26.8)

Serum vit D 39 ( no range on my nhs app)

With this results he said my T4 was high and that i should reduce my thyroxine to 75mcg. He sent an email to the endocrinologist for some advice - in his email i can see on my app it says she is feeling quite anxious at the moment and i am not quite sure why that is.

GP suggested as my vitamin d levels were in the lower range - he prescribe a high dose of SunVit-D3 10,000 unit tablets, for 1 month only.

i questioned my thyroid results as food and drink could have altered my results and be wrong to reduce my dose. he doesnt think food/drink makes a difference to my result !! He then agreed to wait for a month as the endocrinologist had not replied yet and retest thyroid levels after 1 month.

on all my previous thyroid blood tests, i took thyroxine in the morning prior to the blood test. i thought i had to take it in order to test it and check that i was on the right dose. But on this page its recommended to not take thyroxine prior to testing. So these results after 1 month are without thyroxine and no food/drink.

this is the result. i asked the nurse to test T3, and she wrote on the form.

TSH 0.22 (0.27-4.2)

T4 21.9 (12-22)

T3 5.2 (3.9-6.7)

In the meantime the endocrinologist replied, to lower my dose. but with these results my GP thought it might be best to keep at the same dose (100mcg) and perhaps retest the bloods in 2 months. He also suggested it would be good for me to see the Endocrinologist, but advised it would be 1 year wait as it would be a routine appointment !! unless i go private. His words !

i am feeling a bit confused, i am not sure if my feelings/symptoms are related to the thyroid. my T4 is really high - does it mean i am being overmedicated ? should i reduce my dose ? what would the reduction do to my T3 ?

i would appreciate some feedback. Many Thanks for reading.

[PurpleNails Administrator]

Welcome to forum.

Was you nodule hyper functioning or was removal due to compression/ size.   As previously being hyper can cause low TSH.  Down-regulation of HPT axis (Hypothalamic-Pituitary-Thyroid) The technical term.

Have you ever had thyroid antibodies tested? TPO & TG antibodies? 

TSH isn’t reliable for lots of reasons.

“i said to him i already had breakfast and coffee, as this was around 11 am. He said it was fine”

Doctors aren’t taught its importance.  So they don’t account for time of test or of the dose taken,  the results can vary because of those factors. It may mean the difference between a result being in range or out of it. Consistent testing also allows more accurate comparisons of results. 

All nutrient look below optimal 

Serum Ferritin 52 (30-148) 

Serum Vitamin B12 469 (197-771) 

Serum Folate 6.1 ( 3.9-26.8)  

Serum vit D 39 ( no range on my nhs app) = optimal 80, 100.   

Will likely need to continue Vit D (at low dose ) supplements to maintain. 

“she is feeling quite anxious at the moment and i am not quite sure why that is” 

Most doctors would assume you are over replacement on results of -low TSH -high FT4.  I’m surprised your doctor doesn’t attribute anxiety to that.  Although it borderline & FT3 wasn’t tested.

Your most recent results 

FT4: 21.9 pmol/l (Range 12 - 22) 99.00%

FT3: 5.2 pmol/l (Range 3.9 - 6.7) 46.43%

This show FT4 at very top of range but FT3 is in lower half.

 I think you first step should be to improve nutrients, hopefully this will improve conversion and your FT3 will rise. It might be with improved conversion levels balance out, or you may find with an improved FT3 you can reduce Levo (slightly eg half 25 to 12.5 adjustment) as some feel high FT4 causes symptoms.  99% is in range.   Some are not affected by FT4 low or elevated provided FT3 is optimal.

Others need FT4 & FT3 optimal, for most that FT4 top 3rd FT3 top 50% but optimal is individual. Some may be optimal with FT4 & FT3 in lower half of range.

[ginger-rose in reply to PurpleNails]

Hello, thank you for your reply.

As far as i can see on my NHS app - i don't think i was ever tested for thyroid antibodies. TPO & TG antibodies.

I remember having Doctor appointments and asking about my thyroid levels ( history in the family) and I was told my results were fine. It was only when i visibly could see my neck swollen, and a visible Lump ,that my previous GP sent me to have a scan and it was confirmed i had a large nodule on my right side. ( i was having problems with my voice, swallowing, discomfort etc)

The consultant meantined the Cancer word but the biopsy results showed to be benign.

As it was giving me a lot of pain, it was removed 7 years ago. They managed to save half of thyroid. On a few occasions i questioned my GP if i need to take thyroxine but i was told the blood test was in range. Not Needed. Now i know they only ever tested TSH.

3 years ago, it started all over again on my left side, and i had it removed in may 2021 and been on levothyroxine 100mcg since thyroidectomy.

Not much knowledge about it. I was told the blood test TSH was in range and to take thyroxine for the rest of my life .....

I find the GPs are so busy, and not really offering a 1 to 1 service. rushed phone calls, reading the notes on the computer as we speak and not knowing what to say to me, it could be this or it could be that ..... doesn't give me confidence that i am being looked after. - if that makes sense. they are the professionals.

I think i will try to improve nutrients, and i was thinking it might be good to have private blood tests. Would you recommend specific ones ?

Thank you very much for your time.

[PurpleNails Administrator in reply to ginger-rose]

List of companies / discount codes

thyroiduk.org/help-and-supp...

Order online, fingerprick kit to complete draw at home (extra fee for venous draw at clinic or home visit).  Post sample back (ideal early in week to avoid weekend post) track delivery.  Results are available online usually quite quickly.  

Some offers a full thyroid function / thyroid antibodies / nutrients & CRP inflammation marker eg Medichecks - Advanced Thyroid Function Blood Test.  This might be a good option. Others offer funtion only or vitamin D separately.  Eg Monitor My Health  

As your thyroid has been removed some time ago it would be unlikely you have thyroid antibodies at this stage, but should be tested at least once.

Things to remember when testing:

A - Always check what’s being tested & collect test results with reference range.

B - Biotin - cease 3 days before draw to avoid possible test interference

C - Consistent unchanged dose - minimum 6 weeks previously before retest 

D - Delay replacement dose on day of test (take after blood draw)   

E - Early morning appointment. (Book as close to 09.00 as possible) 

F - Fast overnight.  This can have a slight impact.  Hydrate with lots of water

[ginger-rose in reply to PurpleNails]

Thank you very much for this information.

[SlowDragon Administrator]

As well as improving vitamins

Which brand of levothyroxine are you currently taking

Do you always get same brand of levothyroxine at each prescription

Many people find it better/essential to be on same brand levothyroxine at each prescription

Also ….Do you know if you every had thyroid antibodies tested for autoimmune thyroid disease before thyroidectomy

[ginger-rose in reply to SlowDragon]

Hello, thank you for your reply.

This month i am taking Accord, but the last 3 months i was on Aristo. and previously i think i was on Accord.

I think the first Year after operation i was on the same brand, but this last year i have noticed different brands, because the packaging was noticeably different.

To be honest, i hadn't really paid much attention to the brand - i had assumed Levothyroxine was the brand ! but since reading on this page i have been more aware but i have not mentioned to my GP.

And i don't think i was ever tested for TPO & TG antibodies before thyroidectomy.

i was made to believe my thyroid worked fine, but it was removed because of several large nodules.

[pennyannie]

Hello Ginger-Rose and welcome to the forum :

Please stay on your current dose - lowering your T4 will likely lower your T3 and it isT3 that runs the body and too low a level of T3 for you will cause all sorts of symptoms of hypothyroidism.

If you go into Thyroid UK - the charity who support this forum - thyroiduk.org - there is a list of hypothyroid symptoms - just a tick box exercise for yourself to monitor against as you start to rebuild your health and well being.

A fully functioning working thyroid would be supporting you on daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of 4 at around 100 mcg.

T4 - Levothyroxine is basically inert and a storage hormone which your body needs to be able to convert into T3 that active hormone that runs the body and said to be around 4 times more powerful than T4.

We need optimal levels of core strength vitamins and minerals for Levothyroxine to work well and convert to the T3 within the body :

I now aim for a ferritin of around 100 : folate 20 : active B12 - 75 ++ ( serum B12 500++ ) ad vitamin D up at around 100.

We generally feel at our best when the T4 is up in the top quadrant of it's range as this should then convert to a good level of T3 at around a 1/4 ratio of T3/T4.

The accepted conversion ratio when taking T4 only is said to be 1 / 3.50 - 4.50 - T3/T4 - with most people feeling at their best when they come in this range at 4 or under :

So, if we divide your T4 by your T3 reading we get 4.20 - so you are struggling to function well and slightly outside the range and this could well improve once your vitamins and minerals are built back and maintained at optimal levels.

Some people can get by on T4 - Levothyroxine only.

Some people find T4 doesn't seem to work as well as it once did and by adding back in that little bit of T3 their own thyroid supported them with they can then restore T3/T4 hormonal balance.

Some people can't tolerate T4 and need to take T3 only - Liothyronine.

Whilst others find their restored better taking Natural Desiccated Thyroid which contains all the same known hormones as the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.

You are not overmedicated unless your T3 is way over range :

It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH seen in isolation, nor a TSH and T4 reading,

Since you haven't a thyroid, your feedback loop, the Hypothalamus - Pituitary - Thyroid - the HPT axis - on which the TSH relies on is now not a working circuit and open ended - as your thyroid is not there and this feedback system incomplete and a totally unreliable measure of anything.

[ginger-rose in reply to pennyannie]

Hello, thank you for your reply.

I am very grateful to this page. I have learned a lot about the Thyroid.

Since taking thyroxine i know inside me i felt different. hard to explain. And as i also been suffering with IBS ( no test result to assume other problem) i have been focusing on certain symptoms and ignoring others . Doubting myself.

These last 6 months it just taken a toll on me, all of a sudden i feel like i am not in control of my on body.

Thank you very much for this information. i definitely need to make a plan to feel better.

[pennyannie in reply to ginger-rose]

Ok then - yes, IBS needs sorting out as the T4 absorption / conversion happens in the gut and liver :

It is a slow build back to better health but you can do it, I did, and so grateful to this forum and Thyroid Uk - and I now try and give back where I think I maybe able to offer help and advice to someone else just starting off ;

Thyroid UK also hold a list of patient to patient recommended thyroid specialist - NHS and private - it might make sense to get a copy and see if there is anyone there and many specialist now offer video appointments so distance may not need to be a problem and just might be faster than waiting for NHS as waiting times seem a bit 'patchy ' throughout the country.

You can also start a second post asking forum members for recommendations -

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