So fed up with conflicting knowledge about Thyroid disorders, it's a minefield out there! British GP 's test your TSH and off you go with Levothyroxine and you live "Happily ever after" NOT , well not for me its been 4 years of hell.
I think its absurd that there is no other NHS treatment other than levothyroxine, which has given me all other hosts of side effects and GP is not interested. Even wrote to CCG and their reply was NO cant afford it.
I think everyone here will agree with you!
There is an army of us who either self treat or go private, to an amenable consultant.
I worked out recently that if I assume my NDT dose doesn't increase then I will be spending around £850 a year on supplements, prescriptions, and blood tests. That doesn't include the £100 consultant fee for each appointment. My prescription is Erfa, currently £60 for 100 tablets.
I expect my dose will need tweaking but I'm looking at £1000 a year just to stay well. I'm grateful I can afford it but effectively I am now working for 1.5 months a year just to pay for my health care. 🥵
And paying national insurance too.
Well, at least my levo is free! 🙄
I have been paying for private help and tests and meds for 9 years trying to find out what's wrong and what I can do about it. I've spent thousands. Now I'm buying T3. What worries me is what happens when I'm too old to work. Can't claim any state pension until I'm 67 and have very little personal pension. I'm terrified of getting old.
I hear that. It is a cruel system that won't prescribe what makes people well.
I am only 35 but I don't think I will ever not be nervous of the cost of NDT going through the roof making it unaffordable.
56,000 prescriptions for T3 in England last year
Which CCG area are you in
Searchable by CCG
openprescribing.net/analyse...
Private prescription for T3 enables access to Thybon Henning 20mcg tablets at 50p per tablet. (Typical dose 10mcg, 15mcg or 20mcg per day - so cost is £7-£15 per month, plus testing and consultation)
NDT is much harder to get prescribed on NHS
Eg Armour
openprescribing.net/analyse...
Erfa
openprescribing.net/analyse...
This is really interesting SlowDragon Like Hidden I am now paying for NDT ERFA as excipients in Levo made me very poorly. I asked my GP if they could prescribe it and they said ‘no’ as was not available for prescription on the NHS. Could I use this info on prescribing CCGs etc to show that it can be described by the NHS? Would it make a difference, or is it up to the GP practice? I’m in Cornwall & Isles of Scilly HA.
To qualify for T3 or NDT on NHS prescription has to be initially prescribed by NHS endocrinologist and via hospital pharmacy for 3-6 months trial
Endocrinologist then writes to GP to request they take over care and cost of prescription
With annual review back with endo
Kernow CCG one of highest number of prescriptions for T3
openprescribing.net/analyse...
Interestingly I live in Kernow CCG and was told by the thyroid lead at the main hospital no T3 due to cost. He went on to say having looked at my notes that clearly 100mcg levo was plenty. We discussed the fT3 result ( well below range) and he was adamant that I didn’t need it. My very low fT4 was classed as excellent. People don’t really need T4 either. Really? He did agree to tell my surgery to let me take self sourced ndt as needed to feel well. I think there is a current push to lower T3 scripts in Kernow. Interestingly my practice has no patients on T3. This despite being the biggest in the PCN. This may have played a part in my experience with the endo.
If on levothyroxine and had low Ft4, you were under medicated
Approx how much do you weigh in kilo
Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo per day
Thanks @SlowDragon, I know only too well how under medicated I have been. I weigh 90 kg at present due to huge weight gain having treatment refused last year to spring this year. I can bore the medical professionals with my trite comments re dose required. Sixty years since diagnosed and suffered when ndt was withdrawn and for years thereafter. I add Thyroid S to the levo to get things in perspective. Slowly raising it, last week NHS testing showed TSH 0.015 fT4 12.5 (9-19). Another increase in ndt started now. Will give it 8 weeks and get full private testing done.
Battling to get iron sorted. So pretty exhausted these days.
I add Thyroid S to the levo to get things in perspective. Slowly raising it, last week NHS testing showed TSH 0.015 fT4 12.5 (9-19).
Obviously if taking NDT it’s essential to test TSH, Ft4 and Ft3
On NDT Ft4 is almost always very low (typically at or near bottom of range)
Most important results always Ft3
Bloods should be retested as early as possible in morning before eating or drinking anything other than water, last dose levothyroxine 24 hours before test and split NDT into 3 smaller doses at approx 8 hour intervals with last 1/3rd of NDT approx 8-12 hours before test
Cheapest option is Monitor My Health at £26.10
Test vitamin D, folate, ferritin and B12 at least annually
Thanks for getting back to me SlowDragon .Yes I already use MMH for regular testing. No danger of fT3 from the local lab. I have always fared well on ndt it was after all the only treatment when I was diagnosed. I have followed the protocol for testing on this forum since I joined.
I have always had low TSH so under reference range always when on ndt.
I supplement Vit D, next test due in a few months but now on maintenance.
Also low B12 so been checking the advice here re supplementing that.
Below range MCV, low in range haemaglobin and ferritin at 12.3 (10 - 204). GP told me no action needed with such good results!
The diabetic nurse got a three month iron script via another GP but I have dreadful side effects. The previous one month supply left me with a lower ferritin than when I started!?!?!?
Currently not taking iron for two weeks as GP is considering requesting an endoscopy as hiatus hernia and Barrett’s oesophagus diagnosed ten years ago. Advised he needs to check if the worsening symptoms as just taking iron or if something else might be the problem. For sone reason he feels that he should NOT follow NHS Kernow guidelines and have my Barrett’s monitored by gastrenology as guidelines advise GPs they have to do. This has come in since my diagnosis. Arrogance is outstanding, speaking to him on Thursday when I will learn his latest pearls of wisdom on reasons to leave me constantly exhausted and breathless with any activity. I am going to suggest iron injection as a sensible option. Fitting tablets in with other stuff involves alarm through the night just in case my bladder let’s me sleep too well. On the plus side I can get back to the diabetic nurse who phoned to check on things last week and said she is happy to discuss with other GPs at the surgery to get my situation addressed.
We live in sad times re GP care.
Are you on any PPI like omeprazole or Lansoprazole for HH or barrett's esophagus
PPI can significantly lower all vitamins, but especially magnesium, B12 and iron
Clearly ferritin is appallingly low
There’s lots of different options for iron supplements
Are you vegetarian or vegan
humanbean is the iron and ferritin guru on here
She may pop along.
Meanwhile read her many posts and replies on how to improve low iron and ferritin
Cheers @SlowDragon, I have been checking out some @humanbean comments on iron and ferritin. I really am at my wits end with GP pretty much. I may make notes to read from when I talk to GP on Thursday. Not veggie or vegan and eat liver once a week and dark green veggies.
Think I’ll do a new post if my phone consult on Thursday pm is a disaster. I will definitely need some help as I seem to be getting steadily more exhausted. I have read that ferritin should not exceed 70 for those with ckd. Probably based on a particular scale and I imagine around half way. I need to do more research on this.
Yes I take omeprazole for the Barrett’s. I use Better You, Vit D +K2 and Magnesium Chloride. Avoiding any oral products helps with absorption I find. I was on a B complex and B12 a few years ago but obviously I have become lazy and let them slip.
Latest at end of August
Serum vitamin B12 level 278 ng/L [187 - 883]
Serum folate level 7.1 ng/ml [3.1 - 20.5] So some room to improve I think.
Thank you so much for your help.
So if on PPI (and presumably necessary with HH and BO)
You need to supplement continuously to maintain OPTIMAL vitamin levels
Serum vitamin B12 level 278 ng/L [187 - 883]
Serum folate level 7.1 ng/ml [3.1 - 20.5]
DEFINITELY need to Improve, B12 especially
Looking for B12 at least over 500
Folate at least half way through range
Low vitamin levels linked to poor conversion of Ft4 to Ft3
Low Ft3 linked to low vitamin levels
Low GFR (and poor kidney function) linked to low Ft3
It’s always a bit Catch22. Add in diabetes and I know how to rock and roll those figures 😄
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
B vitamins best taken after breakfast
Thorne Basic B is a recommended option that contains folate, but is large capsule. 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...
Low B12 symptoms
b12deficiency.info/signs-an...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
cytoplan.co.uk/shop-by-prod...
healthunlocked.com/thyroidu...
Thanks for those links, sublingual lozenges sound ideal. For now I will read all the links.
90 kilo x 1.6mcg = 144mcg as likely daily dose levothyroxine required
Obviously all four vitamins MUST be optimal
Ferritin at least half way through range (around 70 and nearer 100)
Vitamin D at least 80nmol
Folate at least half way through range
Serum B12 at least over 500
Active B12 at least over 70
Thanks SlowDragon all this info is useful. Sadly Endo in Kernow wrote to GP saying Levo only treatment available and I’d have to put up with side effects!
Sorry you too had a hard time.NHS Kernow is really cutting back and leaving us to sort ourselves out. I wonder what the head hon ho says to his private patients at The Spire?
Private prescription via recommended thyroid specialist endocrinologist enables access to Thybon Henning 20mcg tablets at 50p per tablet
Typical dose is 10mcg-20mcg per day - so that’s £7-£15 per month plus cost of annual consultation and Private blood tests
I don't know what all these initials mean. Can someone please enlighten me? I have been on Levothyroxine for many years and couldn't take the dose I needed because they made me feel suicidal and completely irrational emotionally. Slowly over years, I have increased the dose slowly until my system got used to it. I still feel very sad, weight on, sluggish and little energy. TSH is ok and I was told that taking T3 (is that the armour?) would probably make my emotional state worse. Has anyone got any knowledge about this please? Many thanks <3
Abbreviations and acronyms. This may help 
healthunlocked.com/thyroidu...
Please write your own post
With how much levothyroxine you are currently taking
What most recent results are (including thyroid antibodies)
Important to regularly retest vitamin D, folate, ferritin and B12
There can be no definitive knowledge about a subject which is not yet fully understood.
In fact 'definitive knowledge' is part of the problem. NHS firmly believe they know that TSH tells them pretty much everything, and that T4 from Levo will be turned into the right amount of T3 to supply the needs of the body .
So 'lots of sometimes contradictory information' is the way it must be , because once you realise how very individual everyone's thyroid hormone levels are 'in health' .. it becomes obvious that there can't possibly be 'one right way' to treat them all once their thyroid has gone wrong.
Once you have access to your historic and latest blood results, and can see what has, and hasn't, been tested , then people can advise if the best dose decisions have been made to help you do best on Levo , and how to go about challenging GP to improve the situation if they haven't.
The NHS does also treat with T3 , but only if an NHS Endo states there is a need.
This is difficult to get access to , and a bit of a postcode lottery, (and even if they give it, they will then be very keen to take it away again )........ but it can be done. Plenty of people on here get T3 prescribed by NHS.
Understanding your own test results is the first step.
Thank you all of you for replies. Very helpful. Will get copies of tests and post. Can't go private, as cannot afford it.
Generic medications have no price controls
In theory multiple suppliers dives prices down
But niche “single licensed “ generic medications were sought out for unregulated massive price hikes
news.sky.com/story/regulato...
Price is now slowly dropping with 3 suppliers ….down from £268 per 28 tablets, now £101….still a way to go downward
Thybon Henning 20mcg tablets on private prescription are 50p per tablet
Interestingly, a thyroid friend of mine went to our GP recently and was told that they had a new person in post in the surgery, so they wanted to do new bloods.
My back immediately went up at this point but before I could start ranting, my friend told me that they now wanted to look at her FT3 levels as well, “as it seems many people need some support with this too”.
I nearly spat out my tea. Anyone would think T3 had become cheaper or something….
Amazing! I wonder how long that enthusiasm will last though. And it remains to be seen whether the lab actually does the T3 test, as they typically override whatever the GP asks for 
That’s exactly what I said! The lab usually overrules the request. We’ll see.
It seems there’s someone new in the surgery with a specific interest or job role in thyroid matters. I was planning to continue avoiding anyway and then a letter arrived the other day asking me to come for my annual bloods…..
Think I’ll let them know I’ve got private ones, thanks anyway!
Tell them you're aware of the blood test tube shortage, so you'll be happy to pass this time 🤣
Good thinking! 😂
That might go down better than “nah, you’re alright thanks, I’ve got it under control” !
T3 is cheaper…and falling further
About time. I’ll never know if this is why our surgery now seem more keen on it but it’s a step in the right direction 😊
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