Lactose Free Thyroxine

[Sunsette1]

Hi all

Does anyone else have a lactose free thyroxine prescribed? How easy was it to get prescribed?

I am on a strict gluten and dairy free diet because my body reacts badly to both these food groups ... swollen stomach, nausea, headaches, even vomiting sometimes, especially when I eat dairy. This has only happened since I had Norovirus last October. I had a food intolerance test done by a health food shop which confirmed that gluten, wheat, dairy and lactose (as well as other food items) were causing me gastrointestinal issues. I took myself off everything and drastically changed my diet. The problem is I did this before being tested by the doctors, about 4 months before, meaning that when the doctors tested me I showed up as having no intolerances because I had already cut it out my diet, so officially I can eat everything.

What grounds do I have to request lactose free thyroxine because of my diet alone? Or do I have to do drastic things in the doctors and eat cheese in front of them as my symptoms are instant lol.

I am only enquiring because I am having trouble with my thyroxine symptoms, which thinking about it have become increasingly more prevalent since having the Norovirus last year so wondering if it is something as simple as the lactose in the thyroxine that is causing my body distress.

Any information would be greatly received 😊

[SlowDragon Administrator]

Teva brand of Levothyroxine is lactose free

It's a Marmite brand, in that patients either love it or hate it

If not tried, perhaps it give it a go. Widely available, in fact far too many patients who can't tolerate it keep getting it

If you find you don't get on with Teva there's liquid Levothyroxine, but it's much more expensive andGP therefore reluctant to prescribe

Add your recent blood test results and ranges and members can advise if optimally medicated

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

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)

[Sunsette1 in reply to SlowDragon]

My recent results are not great, I know this had added to me feeling crappy, just had a dose decrease from 150mg to 125mg (dropped to 100mg first but this caused my body into a severe fatigue meltdown so currently off work for 2 weeks to recover).

Will post my results when I have been retested at the beginning of December. My doctors only test my TSH and sometimes my T4 (if I’m lucky) so will be paying for a private test the same time as having the one done at the doctors to check everything else to diagnose my own results. I don’t feel like my GPs know enough about hypothyroidism to keep me healthy.

Will speak to them about Teva to see if they will prescribe it. Failing that I will sit at the doctors and cry really loudly until they help as I’m sick of feeling ill.

I interestingly mapped all my results as far back at 2001 yesterday and I have never been stable. I don’t think my body actually likes Levothyroxine one bit! Unfortunately had it from birth so still have a long time on this wagon feeling rubbish!

[SlowDragon Administrator in reply to Sunsette1]

Presumably you have Hashimoto's

Then once you get TSH around one, vitamin levels optimal.....if FT3 remains low then you may need addition of small dose of T3

It is possible on NHS, but you will need referral to NHS endocrinologist

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 ask Dionne for list of recommended thyroid specialists, some understand that some people need T3 to be stable

Professor Toft recent article saying, T3 may be necessary for many in part because of genetic variation

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

About 16% of thyroid patients have DIO2 gene variation- you might look at getting this gene test. Especially if going to try to get need for T3 recognised and prescribed on NHS

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

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

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Come back with new post once you get results in December

If you change to Teva......you would need to wait 6 weeks from changing brand before testing

[posthinking01]

Hi I have liquid thyroid hormone by Concordia had to get a private lactose test done though - and it is 80 pounds a bottle.