2 year post TT

[Lucy1988]

Next month it will be two years since I had my thyroid removed due to Graves disease and a surprise cancer find!

Feeling sad remembering the energy I had before my TT and just wondering if I will ever feel like my old self again 😔

[shaws Administrator]

I'm sorry you had your thyroid gland removed. It would take a while for your body to recover from your operation. The cancer find on your thyroid gland would have been a shock too.

What are you taking for thyroid hormones replacement, i.e. levothyroxine, liothyronine or Natural Dessicated Thyroid (i.e. NDT) and dose?

Did you get a print-out of your latest blood test results, with the ranges?

When we are on a dose of thyroid hormone replacements that suits us and TSH is around 1 with Free T3 and Free T4 towards the upper part of the ranges and we should begin to feel better. Many doctors seem to only take notice of the TSH and rarely test the 'frees'.

What is your replacement dose?

Do you have a print-out of your last blood test results - with the ranges that you can post, so that others will respond.

Has GP checked Vit D, B12, iron, ferritin and folate? If not request them for the next blood test.

Hopefully when you are on the correct dose - which can take time you should begin to feel much better.

Do you follow this advice when having a blood test for thyroid hormones i.e. :-

Always make the earliest possible appointment - even if made weeks ahead. It is also a fasting test (you can take water)and don't take thyroid hormones until after the blood draw.

Request TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. B12, Vit D, iron, ferritin and folate.

Put results on a new post.

[CaptainBeOS]

Snap, except I had mine for thyroid cancer alone. Worst two years of my life. Total Thyroidectomy = Total nightmare. But, you can feel better...

These papers may help:

ncbi.nlm.nih.gov/pmc/articl...

and

ncbi.nlm.nih.gov/pmc/articl...

Key quote is this;

"In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level"

If you are on T4 monotherapy then try to get your TSH is in this range. If you find you can't achieve that because of adverse effects then it's time to consider combination therapy or NDT.

I have to take combination therapy to feel anything other that total rubbish and I have to take more T3 than recommended in the first paper ( which is 1:10 ratio of T3:T4, also the dosing ratio that NHS endo's spout if you do manage to get T3 on the NHS). I got mine on the NHS after lots of jumping through hoops, saying over my dead body and getting a private NDT prescription to prove the point that it would not kill me and then rubbing the NHS endo's nose in it. At the moment I am supplementing my NHS prescription with a little NDT to get more T3 than they are willing to give me, the ratio is nearer 1:7 in my case. I don't think I have reached the end of the journey yet.

Good luck.

[SlowDragon Administrator]

Welcome to the forum

Please add your most recent thyroid and vitamin results

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

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

When were vitamin D, folate, ferritin and B12 last tested

On replacement thyroid hormones we need OPTIMAL vitamin levels

What vitamin supplements are you currently taking

Just testing TSH and Ft4 is completely inadequate

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

List of private testing options

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

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...

If you can get GP to test vitamins 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

[pennyannie]

Hello Lucy and welcome to the forum :

Can you please share some details of what thyroid hormone replacement you are taking and the dose, plus a current TSH, T3 and T4 blood test results and range so forum members so answer your question in some detail.

Broadly speaking a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1, T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

Some people can get by on T4 only :

Some people find that T4 seems to stop being " as good ' as it once was :

Some people add back in a little T3 with their T4 medication :

Some people can't tolerate T4 and need to take T3 only :

Some people prefer to take Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid dried and ground into tablets referred to as grains.

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

It is essential that yo are dosed and monitored on your T3 and T4 blood test results with the intention to have both these vital hormones balanced at around a 1/4 ratio T3/T4 and high enough in the ranges to be acceptable to the patient and to the relief of symptoms.

No thyroid hormone replacement works well until your core strength vitamins and minerals are strong and solid and this is especially true of ferritin, folate, B12 and vitamin D.

The thyroid is a major gland, the body's engine and responsible for full body synchronisation, including your physical, mental, psychological, emotional and spiritual well being, your inner central heating system and your metabolism.

Graves is a poorly understood and badly treated auto immune disease and can also play it's part in your health and well being but since your thyroid has been surgically removed the symptoms just need to be understood and managed though may not even be of any concern ever again.

I hope the above is of some help and it's just a nutshell of all things thyroid, and if you go on the Thyroid UK website, who are the charity who support this forum you can read more about all things thyroid just as you can read further around Graves Disease on the Elaine Moore Graves Disease Foundation website.

I have Graves and had RAI thyroid ablation i 2005 and became really unwell around 8 years later and when I started my research - so not ideal, having to do it all back to front.

I was treated with T4 monotherapy in primary care and dosed and monitored on just a yearly TSH blood test :

I was refused both NDT and T3 - Liothyronine through my local hospital and surgery :

I now self medicate and am much improved buying my own full spectrum thyroid hormone replacement and run my own blood tests as a TSH blood test is less than useless when you haven't a thyroid gland.

[Lucy1988 in reply to pennyannie]

Hi thank you all for the advice.I don't have a copy of my most recent test results. I get my bloods tested once a year is this enough? Should I have more?

I am currently on levothyroxine 125/150mcg and I don't stick to a brand.

I have heard of people self medicating with NDT but I'm not sure if I feel comfortable doing that with the cancer.

[pennyannie in reply to Lucy1988]

No worries, before we can help you further we do need to see a TSH, T3, T4, antibodies, inflammation, plus ferritin, folate, B12 and vitamin D result and range.

I couldn't get my doctor to run this full thyroid panel so resorted to using one of the private companies as listed on the Thyroid UK website.

There are several companies to choose from and you need a full thyroid panel of around 10 blood test analysis - sometimes referred to as a Thyroid Ultra - or a Thyroid Bundle :

You need to book an early as possible morning appointment, refrain from taking any supplements for around a week before hand and fast over night, just taking in water and take your T4 - after the blood draw - it won't matter as T4 is a storage hormone.

I chose a company who offered a nurse home visit to draw my blood " at home " as I was too ill to drive anywhere.

This is where I started around 5/6 years ago now, getting myself better.

The yearly blood test of just a TSH is not enough and means diddle squat :

There is no pressure here to take or do anything :

I'm just writing of my experience and offering information as I see things now that I am so much better and have my life back :

[Lucy1988 in reply to pennyannie]

ok thank you i will try and get a copy of my last blood test, I think they did t3 t4 tsh and tg. I don't think any vitamins were tested.I do try and get a blood test first thing and don't take my meds before and fast. The only time I have blood taken later is at the hospital that I am under as it is 2 hours away.

[pennyannie in reply to Lucy1988]

OK then -

Maybe start a new post with any new information.

This forum can get very busy and a post of just 24/48 hours ago considered " old " and tacking new information onto an existing post is not so obviously seen as a new post, and anyway forum members look back, if they need to refresh themselves of your medical history,

Take good care

[Batty1 in reply to Lucy1988]

Im thyroid-less cancer and I have my bloods done at least twice a year and if I feel bad more …. So if your feeling off ask for a complete thyroid test and make sure to get your results.

[Batty1]

I feel your sadness Lucy1988