Absolutely no apetite after thyroidectomy

[Argie1]

Is it just me or does anyone else have absolutely no apetite. I am really not bothered if I never eat again! I’m on 125 mcg Levo and my levels are all in range. Has anyone else felt like this and does it get better? Thank you everyone and happy new year 🥳!

[Hennerton]

I have had a thyroidectomy and I admit, now I think about it that, my appetite is not as it used to be. Nevertheless I enjoy all my food but I never get the hunger pangs I used to get before thyroidectomy. I suppose I just attributed it to getting old.

One sign of low Magnesium is loss of appetite and I use a spray oil every day. I also eat lots of green leafy veg. Maybe it is just another one of those 'hidden' effects of thyroidectomy. Definitely wish I had never had mine...

[Argie1 in reply to Hennerton]

Thanks for your reply. I do try and eat a balanced diet but it’s hard when I just don’t feel like eating. I think I will try the magnesium spray and see if that helps! I do feel a lot better than when I was hyper but I’m not my old self by any means!

[SlowDragon Administrator]

Your previous post shows low FT3

Suggest you get FULL Thyroid and vitamin testing to see where levels are now

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

What supplements are you taking?

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

Note especially his comments on current inadequate treatment following thyroidectomy

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

Important to test vitamin levels and supplement to bring to optimal levels

Many, many patients need addition of small dose of T3

Email Dionne at Thyroid UK after Jan 3rd for list of recommended thyroid specialists. You are likely to need to bypass GP to get correct treatment

[e-mail]

[Argie1 in reply to SlowDragon]

Thank you slow dragon. I currently take B complex and B12 as you suggested before. I did have low normal B12 and low normal ferritin, intrinsic factor was negative. Gp refused to treat. I also explained I am tired all the time and he simply said that’s what happens when you get older! I was 48 then! I hung up on him in the end! Will I need to see one of the endos privately in order to get T3 after emailing admin? Sorry I’m not very clued up on this x

[RockyPath]

Having a bit more T3 available to your cells does boost the interest in food. When I was profoundly hypothyroid I could go all day without eating.

[Argie1 in reply to RockyPath]

Thanks for replying. My levels were apparently normal 3 months ago so I don’t think I’m hypothyroid. I’m much better than I was hyper but not back to my old self, lots of niggles!

[SlowDragon Administrator in reply to Argie1]

Your previous results showed low FT3

NHS medics extremely reluctant to acknowledge or treat due to outrageous price charged to NHS.

Patients suffer, fat cats get fatter

New NHS England Liothyronine guidelines November 2018

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

Media coverage of just how many have had T3 stopped or can't get prescribed

thyroidtrust.org/media-cove...

mjauk.org/wp-content/upload...

[pennyannie]

Hello Argie

Reading previous post I notice you have Graves Disease.

Graves is an autoimmune disease and as such you have it for life.

Your thyroid was the victim of your autoimmune disease and not the cause.

Your thyroid is a major gland and if not treated Graves can be life threatening.

Now with your thyroid removed you probably feel more like life limited.

Your healthy thyroid gave you approximately 100 T4 + 10 T3 daily - I believe, at the least, both these essential hormones should be prescribed and monitored when thyroidless.

Your body has been running very fast, having been hyper, you are now hypo, and have swung to the other end of the spectrum, and would suspect all vitamins and minerals will be low, adding to your unwellness.

There is some reading to do, Graves Disease seems poorly understood and to some degree you may need to become your own doctor.

Elaine Moore - Graves Disease A Practical Guide - this lady has the disease - there is also a very comprehensive website - USA based - so protocol slightly different -

Tired Thyroid by Barbara S Lougheed - another Graves lady detailing her recovery -

Your Thyroid and How to Keep it Healthy by Dr Barry Durant Peatfield - this doctor suffers with hypothyroidism - it covers so much and is a very good reference book -

There is a lot to understand, it does get better, but maybe with you at the helm.

You may need to pay privately for the relevant blood tests as detailed above.

It is unfortunate but doctors do not seem to understand autoimmune conditions -

they are restricted in their knowledge and Nhs guidelines so we face a "double whammy ".

Take good care, it's not a race, it's a slow build back up to being yourself again -

[Argie1]

Pennyannie, thank you so much for your detailed reply, that is great! Yes I think I’ve got an awful lot to learn, I’m definitely going to buy the books you mentioned. It just feels there is no one to turn to, apart from this amazing forum. I know having my thyroid removed was the right thing to do and do feel so much better. I’m going to see the gp anyway just to see if I can get anywhere with the blood tests, if not I will pay privately. Thank you once again, your reply is very helpful. Take care

[pennyannie]

Yes, try and involve your doctor to undertake the full thyroid blood test panel for you.

Some doctors seem to be working to restrictive guidelines and you may have to undertake these tests privately, and sadly, private blood tests may or may not be recognised by your doctor.

Anyway, that is the first step. Post the results and the ranges on this forum and people more able than me will advise you of the next steps back to wellness.

[Argie1]

Hi there! Yes I still have no appetite. I was on HRT for 4 months and found my appetite increased but had to stop this due to my T4 decreasing and my GP wouldn’t increase the levothyroxine as my TSH is low being 0.04. I’ve never felt 100% since my diagnosis of Graves’ disease, I feel tired all the time and can’t cope with stress quite the same. Have you had TT due to Graves and how are you feeling?