Thyroid removed 40 years ago. I take 100mcg x2 everyday and every other day I add 25 micro grams. Now GP says to stop all levothyroxine.

[Arlenka]

Levels too high???

[bantam12]

Why has he said that ? Clearly with no thyroid you can't do it, a few more details of your history and blood results would help people to advise.

[Arlenka in reply to bantam12]

Thyroid was completely removed because of Graves Disease. Haven’t got my results yet.

[SeasideSusie Remembering]

Arlenka

As Bantam says, post your latest results, including reference ranges, with as much information as possible and members will advise.

[diogenes Remembering]

That is one action you must NOT do. If you have been on therapy for that length of time, huge changes like that will make you very ill, and could endanger your life. If it is true that you are overdosed (and the diagnosis depends on how the doctor interprets your results) you should only drop very gently and very slowly, finding out what each change does for you in perception of health before going further. The body cannot properly adjust to violent changes in medication.

[SlowDragon Administrator]

See a different GP

Do NOT stop your Levothyroxine. You would likely become extremely unwell

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, (EU rules changed after May 25th 2018)

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also you need vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus 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 antibodies

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. If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you did the test?

Have you recently had change in brand of Levothyroxine or had any other changes in medications, diet etc?

If you are slightly over medicated (which is probably unlikely) then a small reduction in dose may be needed. Absolute maximum Levothyroxine should be reduced at any onetime is by 25mcg. But often even that is too much

There is recent (incorrect) obsession to lower patients dose to bring TSH "into range". For many, many patients we have to have very low TSH and high FT4 in order to have high enough FT3

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]

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

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

[Arlenka in reply to SlowDragon]

I have asked for a copy of my bloods. Told to pick up at doctors office. I had my bloods drawn at 4pm, no fasting and I also take a B supplement which has Biotin which I have read on this site can make an incorrect reading.

[SlowDragon Administrator in reply to Arlenka]

So refuse to follow GP advice and politely insist on retesting or get full testing privately

Take copy in about biotin affecting results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

[helvella Administrator]

I have nothing significant to add - you have had strong, serious replies from several very experienced patients - and one extremely experienced scientist (diogenes).

Biotin could affect results. Trouble is, any doctor who understood thyroid disease would put "no thyroid" alongside "apparent over-dose" and actually THINK. Withdrawing all thyroid hormone from someone who has no thyroid at all is, in my opinion, gross malpractice.

[Arlenka in reply to helvella]

I am just so frustrated with weight gain and doctors who do not understand my lack of having a thyroid gland. And should they (doctor) made sure I had my bloods done whilst fasting?

[helvella Administrator in reply to Arlenka]

The usual laboratory guidelines don't take account of time of day, fasting (or not) or interference from biotin. I guess we cannot expect a GP to advise when the so-called lab experts don't.

[SlowDragon Administrator in reply to Arlenka]

Strongly recommend full private testing then. Very likely have low vitamin levels and/or low FT3

Essential to test vitamin D, folate, ferritin and B12

Getting vitamins optimal is first step. Then if FT3 remains low look at adding small dose of T3 on prescription via T3 friendly endocrinologist.

Dionne at Thyroid Uk can email you a list of recommended thyroid specialists

A few Thyroid specialist endocrinologists recommend tests are done with no Levo in 24 hours prior to blood draw

[Hidden]

Your GP is useless and dangerous. You have no thyroid how are you going to live without

your Levo. See another GP ugently.

I am pleased to see your post on this site the people on here know more than most Doctors or Endos.

I have no thyroid either and self medicate with NDT and now feel well again. It's all down

to the good advice I followed on UK Thyroid site.

[Angel_of_the_North]

GP will kill you if you do that and have no thyroid. If your free T4 or free T3 levels are too high, you should reduce dose by 25mcg at most and retest in 6 weeks. GP is dangerous, don't see him again. If it was possible to report him for being a dangerous, ignorant S O B, I would do it.