Fed up waiting....

[MrsBargirl]

Back in March I had a 2nd thyroidectomy. Before the surgery I was steady on 75mcg thyroxine for 10 years with no problems. Now I'm having blood tests every 4-5 week's as my levels are not right. The GPS doubled my dose to 150 in one go. My first TSH was 72.12 range 0.2 to 4.8. Then 22 and then 18. I'm now on 125 and 150 alternate days and still feel like crap. I'm just totally Fed up especially with the side effects more so the sweating which I wake up soaking and doing simple things breaks me out in a sweat. How long does it take to get level again. Sx

[SlowDragon Administrator]

Low vitamins can seriously affect how well Thyroid hormones can work

Sweating can be low B12

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

Have you had vitamin levels tested?

Can you add your results and ranges on these and thyroid levels

Essential to test FT3

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

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. Many need High FT4 and suppressed TSH in order to have high enough FT3.

Note his comments especially on current inadequate treatment following thyroidectomy

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

[MrsBargirl in reply to SlowDragon]

Hi. Thanks for your reply. I will need to read a few times to get my head around it! At the last test I had hormone profile, ferritan and bone done all came back normal. Go should be ringing in morning and will ask if any more testing can be done. I don't have my test results they're pretty reluctant to hand them over. We are very backward in n.ire!! Sx

[endomad]

My thyroid was removed and my gp forgot so i went quite a few years with no medication, i was nearly in a coma. Levo never worked for me and omg i remember the sweating, mine mostly gone unless i get really anxious. Chopping and changing dose doesnt give your body time to settle. Start with the basics as slow dragon has posted, it can take time, it did for me but some get level easily, we are all different. The important thing is having all the basics right first <3

[MrsBargirl in reply to endomad]

Thank you it's a long sufferable lonely haul isn't it. Got the results it's now 6.15 slowly getting within range and referral sent to see endo 😊 Sx

[Hidden in reply to MrsBargirl]

Your GP increase by too much in one go your body finds it hard to cope.

You can ask at the surgery for your blood test results it's your right.

[silverfox7 in reply to MrsBargirl]

Increses and decreases should be don't in 25 mcg's. Our body gets a huge shock when larger doses are used!

[SlowDragon Administrator in reply to MrsBargirl]

What's 6.15?

[MrsBargirl in reply to SlowDragon]

Sorry my tsh is now 6.15 x

[SlowDragon Administrator in reply to MrsBargirl]

Well TSH needs to come down to around one and FT4 towards top of range and FT3 at least half way in range

What's your current dose? How long been on it?

Levothyroxine Dose should only be increased in 25mcg steps and blood retested 6-8 weeks after each dose increase

Have you had all these vitamins tested? If not request they are done

You are LEGALLY ENTITLED TO PRINTED COPIES OF YOUR BLOOD TEST RESULTS AND RANGES

N Ireland is still part of the UK

Never accept vitamin results are "normal " or "ok"

That's not a result, only an option, often a wrong one too

Vitamins need to be optimal for replacement thyroid hormones to work well

[MrsBargirl in reply to SlowDragon]

Don't know about vitamin etc. Hopefully endo will test a lot more. I'm on 125mcg and 150mcg thyroxine every other day. Could it be possible my body has been shocked by the sudden Increase at the start by go doubling my dose. My surgeon reckons I should be on around the same as before ok. 75mcg. Thanks. Sx