Thyroid Nodule Surgery - Advice needed - Thyroid UK

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Thyroid Nodule Surgery - Advice needed

Edwards17 profile image

I was diagnosed with hyperthyroidism 2 years ago due to various symptoms and a thyroid nodule. I had RAI and the nodule reduced. I have been hypothyroid since July 2019. In January the nodule returned, it feels like I have something stuck in my throat, it can be painful as well as having a sore throat and the symptoms such a fatigue, aches and pains worsened considerably. My endocrinologist advises that the symptoms are not related to the nodule. The nodule is likely benign but they I can have surgery. I was really looking for advice prior to my next appointment which is on Friday.

39 Replies

Fatigue, aches and pains could be hypothyroid symptoms are you adequately medicated? Doctor often prescribed medication levels until TSH in range, so It might be you are under medicated. Others have reported a lump in neck improving once on right dose.

TSH levels are unreliable especially after being hyper previously.

What are your recent blood test results. For full thyroid function you need.

TSH

FT4

FT3

Folate

Ferritin

Vitamin D

B12

Have you ever had thyroid antibodies checked?

Has the thyroid been scanned or nodule biopsied?

Thank you so much for your reply. I have asked my doctor to confirm my recent blood test results. I will add them once I have them. I have only had a scan the Endocrinologist will not do a biopsy.

See if your GP practice offers online access to digital record. (England are contractually mandated to provide) practices elsewhere in uk may or may not offer. This is the best method to track any & all your results (also gives access to notes and letters, so very useful)

If not available or in process of setting up (can take about a month) obtain printouts of your results via reception (don’t ask doctor, as the don’t like it). & don’t accept verbal or hand scribbled notes you need a printed copy, this will have sample date & ranges (ranges vary between labs so essential).

Are your blood tests arranged by GP practice or by hospital endocrinology?

I would also contact the hospital and ask for the specialist report related to your scan. The images are usually reviewed after the appointment & sometimes a copy is sent to your GP. Usually you can contact the department secretary direct for copies. This should note the size and nature of the nodule / swelling. It might explain why a biopsy wasn’t required.

Thank you, the GP surgery are going to provide me with printed copies of both the blood tests the doctor requested and the ones the Endocrinologist requested. As it was a combination of both. My online account does not provide them, but I'll ask about it when I go to collect the printouts. I didn't realise in England they were contractually mandated, that is good to know. Also, thank you, I will contact the hospital for the specialist report relating to the scan as I wasn't aware that this was something I could ask for. Thanks for all your help. I appreciate it.

When you first set up online access you are only granted a “basic access”. Speak to your surgery and ask for full access including historical record.

I was able to request this within the system. Each surgery selects there own user system but patients can then use their preferred app, they all have different features, I use several. I was using the TPP systm online and I had to go to Account > manage online services > the add full clinical record.

Here it list a number of services such as Appointments (disabled) medication requests. Some functions are listed as “unavailable”, some are controlled by surgery. (This is misleading, as they are / should be available, just not set up yet) Here you can request services can be added (or removed).

When I requested it, I message informed me “If you are requesting access to your full medical record, we (the practice) have one calendar month to ensure it is processed correctly to new GDPR guidelines. Please be aware that your full medical record will also contain your detailed coded record already”

Once this is processed you should be able to view test results and any correspondence, eg referral & consultant letters, as my hospital specialist copied in the GP with ultra sound reports so didn’t have to approach hospital.

I also obtained historical hospital records. I was able to email for an application form & replied with ID and it was all posted to me. (20 year worth & not 1 previous thyroid test prior to being hyper, in my case!)

Thank you for the information, I appreciate it. My surgery uses TPP systm online and I have gone on and requested access. I really appreciate your help, thanks so much. For the historical hospital records who did you have to contact please to obtain the application form was that through the GP or hospital? Thanks again.

See if the hospital webpage lists a health records department / library. Often a person or department with direct email & address is listed. If not I would try the switchboard and ask it there’s a records department.

I found it straightforward to send back an application form, ID and a witness signature via email. On the first occasion I was seeking a single record, about 6 years old. (4 years prior to my diagnosis) the results were emailed to me. I was wondering what my levels were when I was “healthy” only to discover I was at a hyper level then. Then I requested my entire records in the similar manner. This being a stack of paper it was posted to me & took longer.

If the record is recent contact this formal request shouldn’t be necessary you can approach the department directly for copies. They are usually accommodating & will post to you. Once I was challenged if I would be able to interpret them, I said yes I can, but now I would just say I’d like them “for my records”. I had so many cancelled & rearranged appointments, I now know that secretary more than the doctor.

Thank you, for the advice and information, I will get in touch with them.

I have the results it took 2 attempts to get them despite being told they were testing for TPO and TG antibodies it appears they have not.

My TSH was 2.6 mlU/L (0.3 -4.5)

Free T3 3.9 (3.1 - 6.8)

Free T4 18.1 (10 -22)

Nuclear Antibody - Negative

Ferritin level 80ng/ml (12-250)

Vitamin B12 563 ng/L (150-1000)

Folate (B-C) 8.8 ug (2.0 -18.8)

Vitamin D 118 nmol/L (>50)

Only I have been notified of your post as you replied to me.

It might get missed at the end of a thread.

Could you please start a new post asking for advice on results. So more members & those with more knowledge can offer their advice.

Best to give brief history ie that your are post RAI. What is your current dose levo?

Are these all recent results?

Nuclear Antibody - Negative, this is not the thyroid antibody. This is for autoimmune conditions such as lupus & sjogrens.

TSH was 2.6 mlU/L (0.3 -4.5). This is too high needs to be around 1.

Free T4 18.1 (10 -22) this is ok at 67% through range, just about in top third of range. A Further increase might help.

Free T3 3.9 (3.1 - 6.8). This is very low, 21% of range & explains your hypo symptoms.

Your conversion is poor, often low nutrient cause this and ensuring nutrient are optimal improves it, but your nutrients look ok to me. Folate might need raising slightly to be optimal level.

Ferritin level 80ng/ml (12-250)

Vitamin B12 563 ng/L (150-1000)

Folate (B-C) 8.8 ug (2.0 -18.8)

Vitamin D 118 nmol/L (>50)

Thank you for your message, sorry I misunderstood when you asked about the results in the earlier post. Thank so much for the details and information I appreciate it, I will create a new post.

Noticed you said you have low carb diet? Do you count your daily grams? Too low carb will affect conversion. Moderately low carb is a better aim. I did 80g per day for 6 months, without a serious dip in FT3, but then I’m hyper without medication, helpful in my case, not when you are hypo.

Your FT4 may be showing as disproportionately higher as you took your medication before the draw.

Increase dose (always in 25mg step & retest in 6-8 weeks).

How much B12 do you take? No experience of glucosamine, cod liver oil or vitamin A. How do you find them helpful? Vitamin D has important co factors do you know about these?

Hope your appointment tomorrow goes well.

Thank you, I'm on about 80 grams a day of carbs. I take the 1100mcg of B12. It was a nutritionist who advised to take them to supplement my diet. I take the glucosamine and cod liver oil for joint health and it was helping until my symptoms re-appeared in January. I take vitamin A to help with my immune system. Can I ask what the Vitamin D important co factors are? Thank you.

There are also 2 important co factors when taking vitamin D3. K2(MK7) should be taken as any dietary calcium is then directed to your bones and teeth where you want it and away from blood vessels where you don't want it. Magnesium another important co factor.

Link to different types or magnesium

naturalnews.com/046401_magn...

Thank you.

Sounds very similar to me. Endo says my voice loss and sore throat in thyroid area nothing to do with thyroid. I am waiting for an ENT appointment. My symptoms are overwhelming fatigue, very sore throat, voice loss. The more I try to do physically the worse the pain and voice loss is. Had this off and on for 2 years.My thyroid levels are not perfect but are not way out.

I had RAI in 2015 and am on combo

Edwards17 profile image
Edwards17 in reply to Lalatoot

Thank you so much for your reply I am sorry to hear that you have the same symptoms my Endocrinologist is convinced the symptoms are not from my thyroid.

SlowDragon profile image
SlowDragonAdministrator

What are your most recent thyroid and vitamin results

Absolutely ESSENTIAL to get FULL thyroid and vitamin testing

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

What vitamin supplements are you currently taking

Are you on strictly gluten free diet

Edwards17 profile image
Edwards17 in reply to SlowDragon

Thank you for your reply. I appreciate it. I have asked my doctor to confirm my most recent blood test results. I take 75mg of levothyroxine. I do not get the same brand every time from the pharmacy. My tests are normally fasted but I have never been advised to fast before or to not take levothyroxine 24 hours before it. I take cod liver oil, glucosamine, vitamin a and vitamin d as well as b12. I eat low carb but not gluten free.

SlowDragon profile image
SlowDragonAdministrator in reply to Edwards17

75mcg is only one step up from starter dose

Approx how much do you weigh in kilo

Guidelines on dose by weight is 1.6mcg levothyroxine per kilo of your weight…..but many need higher dose

Request 25mcg dose increase in levothyroxine to 100mcg

Work out which brand suits you best and ALWAYS get same brand at each prescription

Always worth trying strictly gluten free diet

Edwards17 profile image
Edwards17 in reply to SlowDragon

Thank you for your reply I weigh 77kg. I was on 50mg originally in 2019 after I had RAI and then they upped it to 100mg but then my results showed I was over so they put me down to 75mg. Thank you for the information.

SlowDragon profile image
SlowDragonAdministrator in reply to Edwards17

Well you are under medicated now

77kilo x 1.6 = 123mcg daily as likely dose required

Dose should be increased SLOWLY upwards

When you say results showed over medicated on 100mcg ……EXACTLY what was tested……was testing done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Did you feel over medicated

Essential vitamins are optimal too obviously

Edwards17 profile image
Edwards17 in reply to SlowDragon

Thank you, for your reply, I never felt overmedicated. I am always tested 1st appointment which is 08.30. I have never had a blood test where I was advised to not have the dose of levothyroxine for 24 hours prior to this. I will ensure I do this next time.

SlowDragon profile image
SlowDragonAdministrator in reply to Edwards17

Do you know what results were that caused dose reduction

Suggest you get hold of them if not got them already

Never ever agree to dose reduction based on just TSH and Ft4

Many people when adequately treated will have extremely low TSH …..most important results are ALWAYS FT3 followed by Ft4

Edwards17 profile image
Edwards17 in reply to SlowDragon

Thank you for your advice, I do not have the results I will get them.

SlowDragon profile image
SlowDragonAdministrator in reply to Edwards17

Come back with new post once you get hold of them

Edwards17 profile image
Edwards17 in reply to SlowDragon

I will do thank you for all your help 😀

SlowDragon profile image
SlowDragonAdministrator

We would ALWAYS recommend getting FULL thyroid and vitamin testing done (usually privately) BEFORE consultation …but you don’t have time now,

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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

Is this how you do your tests?

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

List of private testing options

thyroiduk.org/getting-a-dia...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Edwards17 profile image
Edwards17 in reply to SlowDragon

I have the results it took 2 attempts to get them despite being told they were testing for TPO and TG antibodies it appears they have not.

My TSH was 2.6 mlU/L (0.3 -4.5)

Free T3 3.9 (3.1 - 6.8)

Free T4 18.1 (10 -22)

Nuclear Antibody - Negative

Ferritin level 80ng/ml (12-250)

Vitamin B12 563 ng/L (150-1000)

Folate (B-C) 8.8 ug (2.0 -18.8)

Vitamin D 118 nmol/L (>50)

SlowDragon profile image
SlowDragonAdministrator in reply to Edwards17

Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Vitamins are pretty good

What vitamin supplements are you currently taking

Have you had coeliac blood test done…..before trialing strictly gluten free diet

TSH is too high for someone on levothyroxine

Most people need TSH around or under one

Ft4 is 67% through range

But Ft3 is only 22% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Most people on replacement thyroid hormones need Ft3 at least 50-60% through range minimum

Request 25mcg dose increase in levothyroxine as first step

Retest in 6-8 weeks

Edwards17 profile image
Edwards17 in reply to SlowDragon

Thank you for the information. The test was done as early as possible in morning before eating or drinking anything other than water.

However, I was never advised to have the last dose levothyroxine 24 hours before a test.

The vitamin supplements I am currently taking are vitamin A, vitamin D, B12, glucosamine, cod liver oil.

I have not had a coeliac blood test done.

As the TSH is too high for someone on levothyroxine what should I do?

Most people need TSH around or under one

Ft4 is 67% through range

As the Ft3 is only 22% through range am I ok to raise it to 100mg? Anything else I can do?

Thanks again for your help.

SlowDragon profile image
SlowDragonAdministrator in reply to Edwards17

Request Increase dose to 100mcg

Retest in 6-8 weeks later

Meanwhile getting coeliac blood test done

Assuming Ft3 remains low (likely) you will need to see thyroid specialist endocrinologist who will prescribe T3

Rare as hens teeth on NHS

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one.

Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Thank you for the information.

SlowDragon profile image
SlowDragonAdministrator in reply to Edwards17

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

SlowDragon profile image
SlowDragonAdministrator

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one.

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Likely to need addition of T3 prescribed alongside levothyroxine

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

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)."

(That’s Ft3 at 58% minimum through range)

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

Edwards17 profile image
Edwards17 in reply to SlowDragon

Thank you I have emailed for the list and articles. Can I ask how would I get T3 prescribed alongside levothyroxine?

SlowDragon profile image
SlowDragonAdministrator in reply to Edwards17

GP can’t initiate T3 prescription (because it’s expensive)

Initial 3/6 month trial must be via endocrinologist

Well over years wait on nhs - so likely private consultation initially

Private prescription enables access to Thybon Henning T3 -£1 per 20mcg tablet

Dose is typically 5mcg (1/4 tablet) 2 or 3 times a day - so 50p-75pence per day

NHS is paying £108 for 28 tablets 20mcg T3 (down from £268) - cartel of suppliers currently under investigation

First step get dose Levothyroxine increase and see what results are like in 8-10 weeks

Come back with new post once you get results

SlowDragon profile image
SlowDragonAdministrator

Vast majority of endocrinologists are diabetic specialists

You need a thyroid specialist

NHS endo’s are pressured by CCG NOT to prescribe T3 due to cost

Some CCG areas are worse than others

Roughly where in UK are you

Thank you for the explanation I am in Northumberland.

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