can anyone help me?I used to use thyroid s years ago after my thyroidectomy but due to other health problems I have just been using levo for a few years. I would now like to go back to it or add in t3. I recently had a gene panel done and I have the gene that doesn't convert t4 to t3 which will explain my constant issues. However I don't feel up to fighting the NHS to get t3 prescribed, it'll take forever.
many thanks in advance.
Perky, how much levo are you currently taking? And do you have some recent thyroid test results you can share here? This will help members to offer help and support.
It might be worth having that fight you know. One last time maybe? The price of T3 has come down a bit in the U.K., and there are now a few more doctors (so it feels anyway) who are prepared to prescribe.
As RedApple has said, your starting point is probably up to date thyroid blood tests—TSH, FT4 and FT3 at the very least.
If you go it alone, you’ll end up having to pay for it all. If you’re like me, you’ll do that anyway but why should you have to, especially if your bloods show that you aren’t converting well?
I know you’ve been down the Thyroid S/T3 route before from having a glance through previous posts so you already know it will probably help.
My gp won't test t3 only tsh which was 5.5 and t4 16I'm taking 150 mcg
I haven't seen the endo for years after I had thyroid cancer and had it removed.
Your GP is OK with this level on treatment? You're hypo already!
I desperately need some T3 in me and also debating whether to fight or pay. I've gone down the fight route before and I ended up with inadequate treatment so I'll likely go private at least initially and to get levels right then try and switch. Bit of a compromise that.
Looking at meds prices they are looking pretty steep these days!
I've got a huge incisional hernia from a hysterectomy last year, polycythemia, behcets, thickening of the bowel and other stuff going on so Dr is working through stuff but by bit. Which is why I want to source it myself, I don't want to wait to jump through all the hoops.
I'm with you on that. Can take a very long time. I know my local endo's are pants anyway so no way I'm going back there.
😆
Do you have a specialist for your Behcets , or are you on the books of a Behcets CoE?
If not , I'd suggest you get referred to a CoE , as they don't just monitor or help with managing your Behcets but their comprehensive checks with various Department specialists mean that if another illness pops up that affects your health they refer you on to the right consultant for that and pass on the recommendations for care for you to the GP, basically taking on the fight for you.
If you have the genetics profile for not converting T4 to T3 that with current Thyroid panel tests should be enough for the Behcets clinic to get you fast tracked to an endocrinologist, and to listen to your needs and get you on T3. They are also more likely to work with the Endo to convince them to give you more expensive treatments if you ask them to.
It may be worth a try rather than just relying on local services whom have a habit of trying to treat every health issue as though you are a new patient with only one thing to worry about.
If you have a good local Rheumatologist who is already managing your Behcets organising an appointment with them via an email to their Secretary may be another option. Especially if your Behcets is getting worse because your thyroid issue isn't being treated properly. This will also fast track you to an Endocrinologist and make them more open to more complex treatments because of your complex medical history.
Good luck , Bee
Obviously you need to get FULL thyroid and vitamin testing done before considering next step
TSH is far too high
Likely to need further increase in levothyroxine first
Do you always get same brand levothyroxine at each prescription
Always take levothyroxine on its own, at least 2 hours away from all other medications and vitamin supplements
What vitamin supplements are you currently taking
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.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Recommended on here that all thyroid blood tests early morning, ideally before 9am 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
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
I'm on b12 injections for PA and I don't absorb folate. I can't afford to keep paying for tests it's so frustrating that the NHS leave us in this state.
you have folate deficiency?
A daily vitamin B complex for folate and all the B vitamins
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) This can help keep all B vitamins in balance and will help maintain B12 levels between injections
Difference between folate and folic acid
chriskresser.com/folate-vs-...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement
Essential to test vitamin levels once year
Medichecks test once a year to include folate, ferritin and Vitamin D
Test thyroid levels 6-8 weeks after any dose or brand change in levothyroxine, T3 or NDT….or significant life changes
Monitor My Health Is cheapest for just TSH, Ft4 and Ft3 at £26.10
Having a quick look online and it seems thyroid s is 3 times the price I used to pay! So you may be right about fighting the Dr's. I just seem to be fighting for everything right now and it's exhausting.
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3
tukadmin@thyroiduk.org
Number of prescriptions in England per year up over 59,000….increased from 57,000 2 years ago
I use thyroid s 2.25 grains every day. The price works out at around £28 per month. I have no thyroid. I try not to bother the GP they just made me ill.
I paid $470 AU for 600 x 60mg NDT last week from compounding pharmacy - I thought was pretty good. Thats 200 days for me.
I have just paid £330 for 1000 grains of Thyroid s, so pretty good too.
Seems expensive to me -I pay £90ish for 500, about £170 for 1000.
Hi, I’ve had a thyroidectomy and have the same issues in that I can’t make t3 either. When my GP tried to stop it, my Endo carried out a test at the hospital, I can’t remember what it was called but it involved lots of blood tests at various time intervals over the day. I think this proved it was nothing to do with my pituitary gland and that I just couldn’t make t3, he then wrote to my GP and since then my t3 has been reinstated and to date I have had no issues (touch wood). It is worth the fight so do it.
Changing to Thyroid S
Thyroid s and high cortisol 
New Thyroid -S not as potent?
Naturethyroid or Thyroid-S
High t3's and hypo symptoms 
