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[Brumhoy68]

Tsh result now 46 on levothyroxine of 100 mg a day. Had graves last year and had radio iodine treatment in Feb. Latest free T4 result 8.2

[greygoose]

You had several replies on your last post, which you more or less ignored. I linked you to an article that did say there's a link between thyroxine replacement and medication for epilepsy. Did you read it?

Others suggested there might be a connection with B12 deficiency. Did you get your B12 tested? You say you suffer from ataxia, and that could be due to low B12. But also due to your hypothyroidism.

However, just taking levo isn't going to have any effect on anything. You have to absorb it. And, you don't appear to be absorbing yours. Has your TSH gone down at all on 100 mcg levo? And, your FT4 - even without a range (please give ranges) - looks very low. It's certainly lower than it would have been when you had Grave's. Yet you didn't have problems with epilepsy when you were hyperthyroid?

How do you take your levo? Do you take it on an empty stomach and wait at least one hour before eating or drinking anything other than water? Do you take any other medication at the same time as your levo?

[Brumhoy68]

My tsh results were 0.01 on July and August 2018

Rai treatment Feb 2019

May 2019 0.07

Jun 2019 11.4 tested when in hospital

Jul 19 46 ( tested whilst in hospital.

100 mg started in April

Is b12 part of a normal blood test

Range for the T4 is 9 to 19.

I take my levo with water half an hour before breakfast.

I take my seizure medication plenty of tablets an hour after breakfast.

I have tried taking them at different times splitting them over every ten minutes.

I had no seizures whilst I had graves.

[greygoose in reply to Brumhoy68]

So, your FT4 is below range. You are not absorbing that T4 you're taking. You are very hypo.

It would probably be better if you left an hour between taking it and eating - especially if you have coffee for breakfast. And, your other tablets at least two hours away.

B12 is rarely tested unless we ask for it.

So, if it is agreed - or even if it isn't - that your levo may be affecting your seizure medication - or the other way around - why not do a trial of T3, see if that helps/works out better? T3 is better absorbed - although it's best to observe the same rules as for taking T4 - and will bring your TSH down. It won't do anything for your FT4 levels, but T3 is the active hormone, and should help your symptoms and make you feel better. It's just a suggestion, and your doctors will probably scoff at it, but if it were me, I would want to try.

[SlowDragon Administrator]

Your GP should increase dose of Levothyroxine by 25mcg and bloods retested after 6-8 weeks

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Poor gut function and malabsorption issues are common when under medicated

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Many many people on Levothyroxine need to supplement vitamins regularly in order to maintain optimal levels

But testing should always be done FIRST, before STARTING any supplements

Always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take Levothyroxine early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.

[HowCome in reply to SlowDragon]

Thanks for reply, and link.

Also thanks to GreyGoose.

[Brumhoy68]

Tsh tested on Wednesday now down to 33. T4 now over 12 so that seems better. Just went to gp. He said he can't treat me anymore as my thyroid seems uncontollable and I'm under endicronkgy at hospital. This department at the queen hospital in Birmingham is about as useful as a chocolate fireguard. Uncontactable thourougly rude, and don't seem to have a clue what they are doing. Blood once every two months and never get to see a consultant . Any clues what might help till I get hold of hospital. Just called them and they say the secretaries department only work from 9 till 1 each day. Amazing.

[SlowDragon Administrator in reply to Brumhoy68]

Seems like GP is useless.....

So you need 25mcg dose increase in Levothyroxine and bloods results 6-8 weeks later

It's not unusual for patients to need 175mcg...200mcg or higher

When on an adequate dose of Levothyroxine FT4 result should be near top of the range - 17-19 ....or sometimes needs to be even higher

Absolutely Essential to test vitamin D, folate, ferritin and B12

Request GP does this. Plus coeliac blood test too.

Low vitamin levels are EXTREMELY common with Graves or Hashimoto's

Gluten intolerance in also extremely common with both. Ruling out Coeliac before trying strictly gluten free diet

The aim of Levothyroxine is to increase dose in 25mcg steps, retesting 6-8 weeks later after each dose increase

Different brands of Levothyroxine are often not interchangeable. Many people react badly to Teva brand unless lactose intolerant

[SlowDragon Administrator]

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 doctort



please email Dionne at

[e-mail]

First step is to get dose of Levothyroxine increased until high enough for TSH to be under 2 and FT4 in top third of range

Essential for vitamin levels to be optimal.

So get GP to increase Levothyroxine and test vitamins

Come back with new post once you get results and ranges on vitamins.

Guidelines on dose of Levothyroxine is 1.6mcg per kilo of your weight. But many people need more than that. For example Lactose intolerance can significantly increase dose of Levothyroxine required

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. Note especially his comments on current inadequate treatment following thyroidectomy or RAI

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

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 Levo thyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Research shows 20% of patients after RAI cannot recover on just Levothyroxine

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

british-thyroid-association...

Before considering adding T3 vitamins must be optimal

[wbboucher]

What seizure meds are you on? Depakote and other seizure meds can raise TSH, interfere with T4 and T3 levels. Get a doctor who understands medication impacts on thyroid hormones. You need them raised quickly.