Hi had my thyroid removed 2 years ago. They damaged my parathyroid which arent working properly therefore having to take calcium supplements

[carroll998]

Since operation have felt very tired, my legs and feet really hurt gaining weight, generally feel rubbish. Thought it maybe because of parathyroid but my calcium level ok. My ft4 is higher end of normal, ft3 definitely lower end of normal and tsh is just within out of range for overactive. I am beginning to wonder if its my low Ft3 have mentioned this to endo but even though never been so low he says its fine. Not sure what to do cannot afford private...any advice please

[pennyannie]

Good morning Carroll

Just as a point of reference a fully functioning working thyroid would be supporting you with approximately 100 T4 + 10 T3 daily.

It just seems sensible to me that if there has been a medical intervention and the thyroid is ablated or surgically removed, both these vital hormones need to be on the prescription.

Some people get by on T4 alone, some people, at some point in time, stop converting T4 to T3 and some people simply need both these essential hormones monitored and dosed independently, to bring them into balance and generally into the upper quadrants of their relevant ranges, and to an acceptable level of wellness to the patient.

It would probably be sensible to arrange a full thyroid panel along with ferritin, folate, B12 and vitamin D blood tests as these need to be at optimal levels for levothyroxine to work.

Your doctor may help you with the above, it's worth asking, some people are more able to get these tests on the Nhs than others.

Once with results post back on here with the ranges and somebody better able than me can advise your next step.

Maybe you already have some results to share ?

[carroll998 in reply to pennyannie]

Hi all the blood tests you have mentioned are all ok. Apart from ft3 which is in lower end of normal...if u look at ft4 and low tsh I would be classed as hyperthyroidism but I'm more hyp. Thank you for your advuce

[SlowDragon Administrator]

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

Can you add the actual results and ranges on recent tests

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose 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)

Is this how you do your tests?

Ask GP to test vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Getting vitamins and Levothyroxine dose optimal is first step

If FT3 remains low then, like many, many people you may need the addition of small dose of T3

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 print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also request list of recommended thyroid specialists. Some are NHS and will prescribe T3

Professor Toft recent article saying, T3 may be necessary for many. Note especially his comments on current inadequate treatment following thyroidectomy

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

BTA

british-thyroid-association...

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when 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...

[carroll998 in reply to SlowDragon]

Hi thank u for advice, I will post my blood test results with ranges. I do fast before blood tests, since reading similar advice 😊

[carroll998 in reply to SlowDragon]

Hi my tsh is good my ft4 is good according to what you have written my ft3 low end of normal...what does that mean...what you have written and quoted says ft3 should be around the middle

[SlowDragon Administrator in reply to carroll998]

It's extremely common to be poor at converting FT4 to FT3

As you have had complete thyroidectomy it's common to need the addition of small dose of T3

First step is to test Vitamins. These need to be optimal. Frequently need supplementing to bring to optimal. This can help improve conversion

If after vitamins are improved to optimal, FT3 remains low you will need prescription for small dose of T3 (Liothyronine)

Only an NHS endocrinologist can prescribe NHS T3

[carroll998 in reply to SlowDragon]

Hi thank you, just after op my vitamin d level was very low, my levels have increased quite alot, I also take Magnesium and adcal and alphacal. My calcium is at an ok level. How I have felt for nearly 2 years must be connected to my Ft3, the endo surgeon was so adamant not to give me t3...we shall c 😊

[SlowDragon Administrator in reply to carroll998]

You might consider getting DIO2 gene test. Has to include compulsory counselling

thyroiduk.org.uk/tuk/testin...

If you test positive it can help in argument to be prescribed

Wider non medically recognised test without any counselling

bluehorizonmedicals.co.uk/t...

Dossier presented to Government November 2018

drive.google.com/file/d/1c2...

healthunlocked.com/thyroidu...

Liothyronine gender inequality

england.nhs.uk/wp-content/u...

Recent media coverage

thyroidtrust.org/media-cove...

medscape.com/viewarticle/90...

thetimes.co.uk/article/mill...

Debates in parliament

theyworkforyou.com/search/?...

Roughly where in the UK are you. Some CCG's are more difficult than others