POST THRYOIDECTOMY FIRST BLOOD RESULTS ~ PLEASE HELP!

[Mac64]

I had a total thyroidectomy 6 weeks ago and have just picked up a copy of my blood results. I understood that it was to be a "full blood count" and thought it would include T3 and T4 but I have only had TSH levels tested! Firstly, I thought after TT that it would be vital to have all thyroid hormones tested to see how the body is coping without the Thyroid? Secondly, I am seeing gp in the morning and know that there is a huge ongoing T3 debate and am wondering if that is the very reason I have not had it tested? (I live in Scotland and know that Gps are being advised that they can no longer prescribe T3)

My TSH result is 0.9 (0.27-4.2). I am not bouncing with energy and still off work and battling to keep on top of healthy eating and calorie counting. I can not gain any more weight as this was one of the main symptoms along with fatigue that caused my thyroid issues in the first place.

Thank you to anyone who can give advice.

[Clutter]

Mac64,

TSH 0.9 is low in range but it doesn't mean T4/T3 are good or indicate where in range they might be. A year post-thyroidectomy I had TSH <0.01 on 100mcg and FT4 mid-range but FT3 was below range.

I think it is a very false economy to only test TSH which is a pituitary hormone. Most GP practices will test FT4 but very few will test FT3 now. If you can't persuade your GP to test FT4 in addition to TSH it may be worth ordering your own TSH, FT4 and FT3 via thyroiduk.org.uk/tuk/testin... MediChecks offer #ThyroidThursday discounts.

[Mac64 in reply to Clutter]

Thanks for your reply, Clutter

I will ask about T4 and if it's not on offer, I'll look into your link and do it myself. It does seem ridiculous that patients are having to chase this up on top of dealing with the condition itself.

[Clutter in reply to Mac64]

Mac64,

I think it's disgusting that patients need to when NHS won't. If you order your own test it is worth ordering as a one-off the MediChecks UltraVit or Blue Horizon Thyroid Plus 11 which include vitamin and mineral tests. Optimising vits/mins goes a long way to improving general well being.

[Mac64]

Clutter

I agree! I have already paid for my own surgery as I was being messed about so much, my health was going downhill and I had had enough after two years of misery. This is nothing to the NHS as I have saved them so much already!! But we do what we have to if we are suffering. Dreadful situation though.

Thanks again for your support!

[SlowDragon Administrator]

You also need vitamin D, folate, ferritin and B12 tested

If these are too low thyroid hormones can not work

See Box one in this link if GP is reluctant

onlinelibrary.wiley.com/doi...

Link to recent Scottish parliament debate on T3

There are T3 friendly endo's in Scotland.

scottishparliament.tv/meeti...

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 [e-mail]. print it and highlight question 6 to show your doctor.

Also ask for list of recommended thyroid specialists

[Mac64 in reply to SlowDragon]

Slowdragon

Thank you for your reply and valuable information.

I have watched the Parliament debate and am eager to hear how things progress.

I will have a look at the Thyroid UK articles by Dr Toft also.

It seems that everyone needs to become an expert in order to get any answers

healthwise. I am tired of it all and tired in general, but really appreciate the advice

and clear explanations from other members, so thank you.

[SlowDragon Administrator in reply to Mac64]

if you read many of the regular posters profiles you will see in the main they have had long battle to get correct treatment.

The majority of sufferers are female, the majority of endocrinologists are male.

Medicine is also incredibly conservative and dogmatic. It takes decades to accept new research.

[Inaquandary]

I had my thyroid removed due to papillary cancer 7 weeks ago... My onco sent me to my gp for blood tests, as soon as I mentioned the C word they tested for anything I asked for.. I get results tomorrow. TSH, FT4, Vit D, FBC, Glucose, and I asked them to check FSH too! Very efficient! (For once.)

[SilverAvocado]

Mac64, You don't mention what thyroid replacement you are on, so I wanted to check its something, and it's a dose that sounds plausible! It sounds like you are having very bad aftercare

[Mac64 in reply to SilverAvocado]

SilverAvocado

Thanks. I’m on 100 mg Thyroxine. Doc has said that’s okay for now. Seeing endocrinologist next week and gp has said they may be happy to test T4 and T3 and rT3 but that lab will not do it otherwise! Also 0.9 seems okay although I am still very tired and taking time to recover from surgery and probably the weeks running up to surgery when I was really unwell with Thyrotoxicosis.

Thank you.

[SilverAvocado in reply to Mac64]

I don't think a TSH of 0.9 is enough to tell anything, you really need to see freeT3 to know if your dose is getting enough hormone into your blood.

It took me about 8 months after my TT to adjust my dose to the point where my blood tests looked good. It's essential you get a full panel and have your dose fine-tuned.

[Angel_of_the_North]

Full blood count is not usually for thyroid but is concerned more with liver and blood cells (iron etc). You need a full thyroid function test. You can't really tell from TSH, but 0.9 sounds fine.

[Mac64 in reply to Angel_of_the_North]

Thanks Angel otn.

Gp said no to testing T3 etc!!

[Angel_of_the_North in reply to Mac64]

Worth paying for your own tests from Medichecks or Blue Horizon

[Mac64 in reply to Angel_of_the_North]

I think that’s the route I’ll have to take yes.

But then if T3 is required...can it be prescribed or is that self funded too?

[Angel_of_the_North in reply to Mac64]

AN endo can prescribe it, but the NHS discourages it. It's quite cheap to by your own in Europe.

[Mac64 in reply to Angel_of_the_North]

How would you know if T4 is not working correctly? Is it purely down to blood results and how an individual is feeling?

[Angel_of_the_North in reply to Mac64]

I think so, but I'm not a professional. If your free T4 is high in range but your free T3 is relatively low, it shows that you are not converting T4 to T3 well.

As far as I know, if you had thyroid cancer, TSH should be kept suppressed (ie well below the bottom of the range - around 0)

[Argie1 in reply to Mac64]

Hi Mac64, sorry to jump in on your post but just read your previous post about your decision for surgery. I’m in exactly the same position with Graves that is very difficult to control, I’m on 60 mg Carbimazole, not working at present, been to see the surgeon who was questioning why I didn’t want RAI etc etc, the risk factors etc etc, just wondered how you feel now after surgery? I’ve made my decision for surgery and it should go ahead in January sometime. I hope I’m doing the right thing but know I cannot go on like this. Thanks x

[Mac64 in reply to Argie1]

ARGIE1

Hello. Sorry to hear you’ve had similar issues to myself. I did so much research and read as many online medical reports as I could understand on the RAI versus Surgery debate. I had no doubt afterwards that surgery was the right decision for me. The procedure itself was very much as I expected and although I’m still recovering, I am so relieved not to have those dreadful symptoms as I too could not cope any longer pre surgery. I’m happy to go into more detail (I think I can message you directly here?) if you’re at all interested in knowing more?

I feel I’m certainly in the road to recovery now.

All the best to you.

[Argie1 in reply to Mac64]

Thank you so much for your reply. Yes I would like more details if you have time to message me x

[Angel_of_the_North]

Not necessarily - hypo people can be thin and hyper people can gain weight.

[Inaquandary]

Yep.. Got all those, all fine. Not optimal but within range. Will do for now!