Hi , this is first post. I had cancer 10 years ago, so new doctor is reducing liothyroxine from 200 to 175. I have already gained 7kg this year, alone. He said I might benefit from T3 , but due to NHS restrictions this is not possible.
What does everyone else do? Are you self prescribing? Seeing a private endocrinologist?
All views very welcome.?
Are you on 200 mcg liothyronine and not 200 mcg levothyroxine, was this a typo?
Sorry yes was a typo! I was on levothyroxine 200mcg now reduced to 175. Was told now cancer was gone, no need for a higher dose. In the past when it has been increased, I never felt the benefit.
High doses of levothyroxine are prescribed a few years after thyroid cancer to suppress the TSH in order to prevent the cancer coming back. From this aspect they can now reduce your levothyroxine dose. If you didn't get a benefit from previous increases it makes sense to reduce now. I would let them reduce your levothyroxine until your fT4 comes within its reference interval, normally down to around 18 to 20. If you are still not well then ask to see an endocrinologist, detailing the effects on your life (describing symptoms never works). An endocrinologist can put you on some liothyronine which I suggest you need. You will need to be a touch assertive and let them know the consequences of your current state.
Your doctor shouldn't reduce your dose if you've been fine on it for 10 years. Tell him if he reduces your dose you will be forced to buy your own and will take the same amount.
As jimh111 suggests, should you have typed 'levothyroxine' and not liothyroxine. Levothyroxine is also called T4 and liothyronine is T3?
Hello Jsimp, did you have a total thyroidectomy? Vitamin levels are very important to support the effective use of thyroid hormone.
Have you asked your GP to test vitamin levels? Vitamin D in particular can play a role in thyroid cancer so worth checking levels but at the same time get B12, folate, ferritin and vitamin D checked.
Have you swapped the type of levothyroxine you've been taking at all? I find they are not interchangeable and it's important to stick to one formulation. I don't take T3 although I would if it was available but it's become increasingly difficult to get in the UK and NHS won't prescribe.
In the absence of access to T3 I think the quality of levothyroxine is critical to our quality of life and I won't let the pharmacy swap me between brands. I have also had to go gluten free with low carb and high fat diet to optimise nutrition and try to help levothyroxine to work most efficiently. I take vitamin supplements to keep my nutritional levels optimal and get blood tests at intervals.
I don't think it's satisfactory that people in the UK can't get liiothyronine (T3) and I think we all need to complain loudly because now we're absolutely dependent on the quality of LT4 (levothyroxine) which has had a terrible record for manufacture in the UK and overseas. Additionally, levothyroxine tablets contain such very small amounts of active ingredient in mcgs that a very small variation in the tablets can make a very big difference to our health and without T3 to make up the shortfall we are likely to feel ill. This means we have to take larger than needed doses of LT4 to ensure we get enough hormone to convert enough T4 to T3 for our body functions and cellular use.
I would object to your dose being reduced. Below are some interesting links.
Vitamin D deficiency and supplementation for thyroid surgery
vitamindcouncil.org/low-vit...
onclive.com/conference-cove...
Vitamins advice
Gluten Free – is it safe?
glutenfreesociety.org/glute...
Safety of T3 endocrine-abstracts.org/ea/...
Professor Toft - Counterblast to Thyroid Guidelines
rcpe.ac.uk/sites/default/fi...
Scientific discussion on thyroid hormone regulation
For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested
See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3
Private tests are available
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 be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results
Low vitamins are extremely common if under medicated.
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 dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.
Prof Toft - article just published now saying T3 is likely essential for many, especially in cases like yours
rcpe.ac.uk/sites/default/fi...
Ask for referral to endocrinologist
You need a new endo.
Email Thyroid UK for list of recommended thyroid specialists some are T3 friendly
Office opens Jan 3rd
dionne.fulcher@thyroidUK.org
Getting T3 outside EU and EU (not UK) customs clearance problem?
Recent blood results 
Advice needed! A massive step forward but then a step back...
GP ANGRY
