Me and my lack of thyroid: Some years ago I was... - Thyroid UK

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Me and my lack of thyroid

annnsandell profile image

Some years ago I was feeling increasing pressure on my windpipe. First the GP totally misdiagnosed this but eventually it was obvious that I had a slowly growing goitre. Thyroid tests normal but I was referred and despite initial tests it turned out to be cancerous and two operations later my thyroid glad was removed and I received radium treatment. Rest assured that all the treatment was relatively easy and pleasant although perhaps frightening and worrying for my family. Since then I have had increasing side effects from Levothyroxine although I should consider myself lucky to be alive. Often wondered if Thyroid cancer might be caused by early microwave ovens.

There really needs to be better research into Levothyroxine alternatives, I did see a study a while ago.

5 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Many of us find, even if Levothyroxine worked ok to begin with, it can get worse with age or especially around menopause

Low vitamin levels can badly affect Thyroid hormones and conversion can get worse

Others always find just Levothyroxine is inadequate for number of reasons, including common genetic variation called DIO2

For full Thyroid evaluation you need TSH, FT4, FT3 and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or 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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

After thyroid cancer treatment is to dose to give suppressed TSH. Many patients still need addition of small dose of T3 to give adequate FT3 levels

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

tukadmin@thyroiduk.org

Professor Toft recent article saying, T3 may be necessary for many especially after Thyroidectomy

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

First step is to get full Thyroid and vitamin testing privately

Then self refer or get GP to refer you to recommended thyroid specialists

Ask Dionne at Thyroid Uk for list of recommended thyroid specialists. Some will prescribe T3

Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply to annnsandell

If you are not aware....NHS extremely reluctant to prescribe T3 despite clear clinical need due to outrageous cost charged to NHS for T3 (it's very cheap in rest of world)

bbc.co.uk/news/business-420...

I have no thyroid and only found help with symptoms when I discovered Liothyronine, T3. You can read many posts about this and it is particularly relevant for people in our position. I could write for ever on it and bore everyone to death, so I suggest you simply ask your GP for your most recent blood tests for thyroid and ask also for tests for vitamin D, ferritin, B12, folate and serum iron. I expect all these will be low-ish. You may need to take supplements and probably try to get T3. When you have results, post again and members will advise. I promise that with help, you can feel so much better. It is almost certainly not the side effects of Levo causing your symptoms but is the absence of your thyroid.

Thank you

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