I have been reading posts on and off since I "joined" this forum, and see that a lot of good advice and support has been given. But have never taken taken the plunge in asking for help and advice, so here goes. I was finally diagnosed with Graves disease in 2018, given radio iodine therapy a year later and have since been taking 75mcg of levothyroxine ever since. Unfortunately the levothyroxine upsets my stomach and has done ever since I started it, I wait thec40 mins each morning after taking it before breakfast and as soon as something hits my stomach I am on the toilet. I then have to go again a bit later on before I can eventually get out of the door for work as a support worker, generally feeling quite exhausted before starting work! I have now finally managed to see an NHS consultant endocrinologist who has recommended I contact Roseways labs. He indicated that his suggestion of taking Tiosint would not be funded by the NHS, but not in as many words. I contacted my GP who said he would be prepared to prescribe Tirosint if he could. I have since left a message with Roseways labs but as yet have had no response. My question is does anyone here have any experience of Roseways and of obtaining Tirosint here in the UK. I would welcome any help or support. This journey has been a long and difficult one and I thank you in advance for any suggestions.
Written by
Rara8
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If you are on 75 micrograms, I suspect you could be on Teva.
Unfortunately, a significant number of members have reported that Teva affects them - very often stomach discomfort. (Some others find them the best available in the UK! We are all different.)
You might find that a different make would resolve that issue. You would need to combine tablets (or split some) in order to achieve 75 micrograms.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
Graves is an Auto Immune disease for which there is no cure - and just flipping the patient from hyper to hypo and discharged back out into primary care for the doctor to try and manage - simplistic.
RAI is a toxic substance that slowly burns out your thyroid in situ - the dose of RAI not as exacting as one might think and how long it takes to fully render your thyroid disabled is anyone's guess.
Do you have your discharge letter from the Hospital -- does to give a TSH -T3 and T4 result / range reading- how long was this after the RAI treatment and were you already on T4 - Levothyroxine when discharged ?
Since you have Graves Disease and post RAI thyroid ablation you should be dosed and monitored on your Free T3 and Free T4 results and ranges and not a TSH with an occassional T4 reading - which is what generally happens in primary care.
In order for any thyroid hormone replacement to work well - we need optimal core strength vitamins and minerals - especially those of ferritin, folate, B12 and vitamin D -
and it is known that RAI trashes vitamins and minerals -
so suggest you ask for these levels to be checked as if these are not maintained at optimal - and we can advise on this - your health issues are being unnecessarily compromised even further.
So to help you better - first and foremost - forum members need to see a complete Advanced Thyroid blood panel to include a TSH -Free T3 , Free T4 antibodies, inflammation, and ferritin, folate, B12 and vitamin D - and we can talk you through what this all means and your next best steps back to better health.
If you go into Thyroid UK - the chairty who supports this forum there is page full of private blood companies who can run this vital blood test for you - if your doctor is not able to.
P.S. I'm aware I haven't answered your main question but felt I needed to start a conversation since I am with Graves and post RAI thyroid ablation back in 2005.
75mcg is an extremely low dose unless extremely petite
Which brand of levothyroxine are you currently taking
As you have/had Graves’ disease it’s very common to develop gluten intolerance too
Get coeliac blood test BEFORE trialing strictly gluten free diet
What are your most recent thyroid and vitamin results
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
Dr Ken Blanchard found that some of his patients needed to take their levothyroxine with food as it upset their stomach otherwise. He stated that this might have a slight affect on the absorption and that these patients might need a slightly higher levo dose to compensate.You could try taking it with breakfast to see if that helps.
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