Total thyroid removed in Truro Royal Cornwall Hospital

[Lugraca]

Hi all sorry to bother you all but I’m new in all this... I was diagnosed with thyroid cancer I’m December last year and have my thyroid removed surgery last month, 4 weeks ago. I doing well, some days are a bit better than others but I have an amazing husband who loves me and everyday gives me strength to move forward. I don’t understand much about all this and I feel a bit lost, when I was diagnostic with thyroid cancer my surgeon told me that I will have to take medication for life and make regular blood tests to check levels.... my question is, when do I have to check my levels and should I have to call them or they will send me a letter with my appointment?!! On my discharge letter they just mentioned to my GP for clips removal and blood test for calcium levels on 7 days which I did. ... many thanks

[Cavapoochonowner]

Hello welcome to this forum.I will leave other more well informed people to answer your questions, but I will just say that the people on here are so kind and well informed that you will find so much support.It's so good to be able to discuss worries with other's in a similar situation.I wish you well in your recovery.

[SlowDragon Administrator]

Welcome to the forum

How much levothyroxine are you currently taking

Do you know what the brand of levothyroxine is

Many people find different brands are not interchangeable

So once you work out which brand suits you best, try to always get that brand

Thyroid levels should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Important to test vitamin D, folate, ferritin and B12 too

Ask GP to test full thyroid TSH, Ft4 and Ft3 plus all four vitamins and you probably need calcium tests too to check parathyroid glands are working ok

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Aiming for TSH around or just under 1

Ft3 at least 50% through range and Ft4 likely in top third of range

[Lugraca in reply to SlowDragon]

I’m on 125 levothyroxine ( 100 accord and 25 mercurypharma ) and also take 4 times a day Adcal D3 ( calcium and vitD3 )My question is should I ask my GP in 6/8 weeks for retested?!

Thanks for your help

[SlowDragon Administrator in reply to Lugraca]

Yes....6-8 weeks after operation

Usually after thyroid cancer they aim to keep TSH very low/suppressed and this works to your advantage as this means you won’t be under medicated

Important to test TSH, Ft4 and Ft3 to see how well you convert levothyroxine (Ft4) to active hormone (Ft3)

[Lugraca in reply to SlowDragon]

Thank you so much for your advice

[greygoose in reply to Lugraca]

also take 4 times a day Adcal D3 ( calcium and vitD3 )

Did they tell you that vit D/calcium must be taken four hours away from thyroid hormone? Otherwise, you won't absorb the hormone. And, I should imagine that's difficult if you take the vit D four times a day. Were your parathyroids damaged/removed during the operation?

[Lugraca in reply to greygoose]

No they haven’t said anything about that to me but normally I take after 2 hours but thank you for let me know that and I will start taking 4 hours after from tomorrow then. And yes they removed everything.... next month I will start my radiotherapy....

One more question! What is the best way of blood test results, asked to my GP or private! Some people saying GP don’t do a full retest it’s really scaring me

[greygoose in reply to Lugraca]

GPs only tend to test TSH - or, at best, TSH + FT4. But, even if they tested the FT3, they wouldn't understand the results. So, yes, if you can, it's best to do private tests.

[Lugraca in reply to greygoose]

Can you advise me or know one good private tests in Cornwall

[greygoose in reply to Lugraca]

Details of private tests here:

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

[Lugraca in reply to greygoose]

And then what should I do with the results?!! Sorry I just need to understand and getting the best information to deal with my new me!

[greygoose in reply to Lugraca]

Well, first of all, you have to learn to understand them. So, the best thing to do is post them on here and let people explain them to you. Then, that gives you amunition to use with your doctor to get the treatment you need.

And, as you're taking calcium, it's very important to get that tested regularly. You don't want that going over-range.

Are you also taking the co-factors of vit D: magnesium and vit K2-MK7? Most important because vit D and magnesium work together. And vit K2 will make sure the calcium you're taking goes into the bones and teeth, and doesn't build up in the soft tissues.

[pennyannie in reply to Lugraca]

Hello Lugraca

If you find that your doctor is unable to run the full thyroid panel as detailed above there are private companies, in the link already given, who offer a home nurse visit, if you wish, to draw your blood.

When the results come back you can post them and ranges up on here for considered opinion from forum members, and no doubt offer to share with your doctor if anything looks like it needs further action.

I found Medicare covers Cornwall for home visits - as I too live in the county.

It's early days so just take one step at a time.

I thnk you need to use the backup NHS support services that is in place for you whilst recovering and going through further procedures and use us as back up and a sounding board to talk things through with as there are several people on here who have been through similar.

I'm with Graves post RAI thyroid ablation in 2005 and now self medicating as I was unable access full spectrum thyroid hormone replacement through the NHS.

[Lugraca in reply to pennyannie]

Thanks you so much

[pennyannie in reply to Lugraca]

No problem - it will be a good idea to ask for and keep copies of all your blood test results as then, you can put these up on here, along with the ranges, and ask them to be explained to you.

In this way you will start to learn what the numbers mean and how they interact with each other and where they need to be for better health and well being.

Just out of interest was a thyroid function blood test run before surgery to include your T3 and T4 numbers ?

In this way, we then have an idea of where your own T3 and T4 thyroid hormones were and where we need to dose and replace back to for optimal long term health and well being .

[Lugraca in reply to pennyannie]

They haven’t given me the results of my tests before the surgery the only thing I have is my discharge summary

[pennyannie in reply to Lugraca]

Hey there ;

Thank you - I can't see that too well but think I see it's a summary of your current medications which you have already given us.

I found the following book helpful and is written by a doctor who is hypothyroid:

Barry Durrant - Peatfield writes in an easy to understand manner and though the title reads the opposite of where we both are Your Thyroid and How To Keep it Healthy is important as we do need to know what this gland does so we can try and compensate for the loss.

You might like to read up more on the Thyroid UK website - who are the charity who support this amazing forum - there is much to learn and is an excellent starting point along with other peoples questions and answers on this rolling screen.

[Lugraca in reply to pennyannie]

Thanks I will do Just one more thing if I would like to have a hospital Endocrinology appointments, are you know how can I do?! X

[pennyannie in reply to Lugraca]

Hello again :

Well I would have thought an appointment with endocrinology paramount and part of your care package ?

Maybe check with your primary care doctor - I know what with the current situation schedules may be changed but think this should part of your recovery programme.

[Miffie in reply to Lugraca]

You really should be seeing someone from endocrinology in your circumstances. Ask your GP about it. I have been trying to get to a referral to the endo dept at Royal Cornwall myself for years but been refused . However the chief endo is absolutely fabulous and readily prescribes T3 to those who need it. Good luck with your recovery, take care.

[SlowDragon Administrator in reply to Lugraca]

I removed your photo as it had visible your name and nhs number

[shaws Administrator]

I am very sorry you had to have your thyroid gland removed. When it is healthy, it provides all of the hormones a healthy thyroid gland would do.

Now that you've no thyroid gland (or just have dysfunctional thyroid gland) we can feel very unwell until we get to an optimum dose of thyroid hormone replacements.

Unfortunately, the majority of GPs have not had much training with regards to a failing or no thyroid gland. We, therefore need optimal hormone replacements.

I am assuming you are under the care of an endocrinogist and I do hope he prescribes a combination of T4/T3 or T3 alone. We have millions of T3 receptor cells (brain/heart have the most) and our body needs it to function.

Unfortunately the Organisation we imagined knew more than most members on this forum, has removed a number of thyroid hormone replacements that suited many hypo patients. This means that there is a struggle to find what suits you. The majority find that when they get to an optimum dose of levothyroxine that they feel much better, and it is an inactive thyroid hormone. It should convert to liothryonine (T3) and the heart and brain have the most T3 receptor cells.

I have my thyroid gland and could not improve at all on levothyroxine.

p.s. I'm glad you have a supportive husband, as that's what is needed for support and listening.

[Lugraca in reply to shaws]

Hi thank you for your kindness Well I’m doing fine until now...I left the hospital with levothyroxine 100+25 and calcium D3 4 times a day, in the beginning I was feeling a bit weird and really down but now I start to work a new me and looks like I’m getting there I think ☺️

It’s everything so new for me that really makes me confused and I would like to know everything about to improve my health.... I’m so glad that I found you guys to help me with your experience.X

[Lugraca in reply to Lugraca]

Just one more thing I do have a slide Headache in morning and sometimes evening

[pennyannie in reply to Lugraca]

P.S.

You are not bothering anybody on this forum as this is what it is all about - asking questions, being informed, and having a little knowledge and understanding will stand you in good stead :

I forgot to say that T4 - is Levothyroxine - though I've amended my post now :

And I don't know who you wanted to reply to the above - but maybe try a paracetamol and see if that does the trick :

I think it's still early days for you, although I do read of some surgeons suggesting recovery is a couple of weeks - real life can be a little different - so cut yourself some slack and take one step at a time.

You probably have also given yourself information overload - it's easily done, and we've all been there :

[pennyannie]

Hey there again :

Can I just add :

A fully functioning working thyroid would be supporting you on a daily basis with T1, T2, and calcitonin plus a measure of T3 said to be at around 10 mcg and a measure of T4 said to be at about 100 mcg.

T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone that the body runs on, which is said to be around 4 times more powerful than T4 with the average person utilising around 50 mcg T3 daily, just to function.

Your own ability to convert T4 into T3 can be compromised by low vitamins and minerals and though your ferritin, folate, B12 and vitamin D may be in the NHS range they may not be at a high enough level to convert T4 especially when thyroid less, and you may need to supplement these yourself.

The thyroid is sometimes referred to as the conductor of all your bodily parts, or the engine of your body - it is a major gland and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

Some people can get by on T4 only, some people need to add T3 into the thyroid hormone replacement treatment whilst other people need to take T3 only : everyone starts off on T4 and if symptoms persist other treatment options should be considered, and I'm sure this will happen in due course.

Your TSH needs to be kept suppressed, this is a given, because of your original diagnosis.

I believe you need to just take one step at a time at this juncture and trust your treatment plan as it is still early days, you have had major surgery, and an endocrinology appointment should be in your treatment plan.