No Luck ..

[Yazz1]

Hi Guys just seen Endocrinologist argued with him till was blue in the face he saying his hands are tied because theres no proven clinical trials that say T3 works.. wtf..its been argued in parliament that it does. I said basically because of the cost you will not prescribe it. 🤷🏽‍♀️ Fine I will do my own trail ..get my own. Enough is enough. Endocrinologist waste of time and waste of space they need a new profession.

[MaisieGray]

I don't think something being argued in Parliament is necessarily proof of anything, and certainly not of truth, so you would always be onto a loser with that argument. However, whilst your Endo is correct that there aren't sufficient studies regarding exogenous T3, nevertheless he cannot refuse to prescribe on those grounds specifically, because what should guide him is the RMOC Guidelines for prescribing liothyronine in which it states it may be prescribed only rarely, not that it can never be prescribed. So the relevant quote is "In very rare situations where patients experience continuing symptoms with levothyroxine (that have a material impact upon normal day to day function), and other potential causes have been investigated and eliminated, a 3 month trial with additional liothyronine may occasionally be appropriate. This is only to be initiated by a consultant NHS endocrinologist. Following this trial the consultant NHS endocrinologist will advise on the need for ongoing liothyronine." If you believe you fit this category and therefore should have been given a trial of T3, you could put your complaint initially to PALS that the Endo has refused your request contrary to the RMOC Guidelines.

[Yazz1 in reply to MaisieGray]

Hi I explained all this to him taking my levothyroxine for the past 28years has not helped at all all my symptoms have not improved one bit. But he admitted the main reason is the cost, its effecting me at work at home in my personal life everything. I am going to take it further. Sick and tired of listening to there B.S I even said trial it atleast we can say we did and it has not helped. It's not like they paying our there own pockets.

[NWA6]

😩 I feel your pain! Really really bloody horrid that they keep repeating this nonsense. Good luck in self funding!! I hope the campaigning will all help us in the not to distant future 🤗

[Yazz1 in reply to NWA6]

Searching aboard for reputable suppliers as asked my cousin who worked in pharmacy and she told me it's going to cost £300 for 28 tablets. 🤦🏻‍♀️

[Yazz1 in reply to NWA6]

I hope so too as cant afford to pay £300 for 28 tablets.

[heathermr]

Try asking for Cytomel- the American version of T3. It's only a third the price of British T3 and works far better. It is a available on the NHS but you need to be aware it's not licenced here so at your own risk, and the prescription needs to be presented to a small pharmacist who is prepared to go the extra mile and get it for you. Boots, supermarkets and big chains are not interested but mine comes from Ace in the Netherlands in a few days.

Heather

[Yazz1 in reply to heathermr]

Did your doctor prescribe you them? Where did you get your prescription from?

[heathermr in reply to Yazz1]

Yes my Gp prescribes them for me after a long fight with an NHS Endo about having T3. As I don't have a TSH probably due to a head trauma I can only take T3 and it took a long battle to push the Endo onto giving me T3. I took British T3 for many years before it deteriorated to the poor product it is today. I then persuaded my Gp to change the prescription to Cytomel as it is so much cheaper for the NHS to buy.

Heather

[Yazz1 in reply to heathermr]

I will definitely ask again at my next appointment thankyou

[serenfach]

Many of us have been down this road, hoped the Endo could help and found we had more knowledge than they do! I asked mine to name a hormone the body produces that it did not need and of course he could not. I then asked for a trial of T3. "Your body does not need T3" he said. After asking if he got his qualification on line, I was shown the door!

I self medicate with NDT now.

[Yazz1 in reply to serenfach]

Hows that working for you NDT? How do you feel day to day?

[serenfach in reply to Yazz1]

Better than on anything else! An unexpected advantage is that it seems to control my other autoimmune conditions too!

[Yazz1 in reply to serenfach]

Did you feel cold at all before?

[serenfach in reply to Yazz1]

Yes, bad circulation too - chilblains every winter.

[Yazz1 in reply to serenfach]

I'm taking all the vitamins but still cant get rid of the cold feeling hands and feet cold all the time.

[SlowDragon Administrator]

Before you even consider adding T3 it's absolutely essential to regularly test vitamin levels and make sure they are optimal

Previous post

healthunlocked.com/thyroidu...

As you have Hashimoto's low vitamin levels are extremely likely.

Nether T3 or Levo can work without good vitamins.

First step is full private testing and supplementing necessary vitamins to bring all four vitamins to optimal

This can dramatically improve conversion of FT4 to FT3

Equally important is to try strictly gluten free diet

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist

approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

As you already had test and it was negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Retesting TSH, FT3 and FT4 2-3 months after going strictly gluten free and vitamins optimal.......if FT3 remains low then, look at seeing a T3 freindly endocrinologist for private prescription for T3

This private prescription enables access to cheap T3 from Germany - 31 euro for 100x 20mcg tablets

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

please email Dionne at

[e-mail]

[Yazz1]

I've started taking thyroid complex which has helped my tiredness and I take all the vitamins D3 c calcium everything seems to be ok now but it's the coldness I cant take always feeling cold if could get rid of the cold feeling I'd be happy because I cant get rid of this its causing all the problems. Everything else seems alot better.

[SlowDragon Administrator in reply to Yazz1]

A thyroid complex usually contains iodine and/or kelp

Definitely not recommended for anyone who is hypothyroid with Hashimoto's

Which thyroid complex is it you are taking?

drknews.com/iodine-and-hash...

thyroidpharmacist.com/artic...

Recommended on here to always test folate, ferritin, B12 and vitamin D.

If any of these are low to only supplement these directly

vitamin D, (perhaps plus magnesium and vitamin K2 Mk7)

if B12 and/or folate are low a good quality daily vitamin B complex. Remember to stop taking any supplements with biotin in a week before ALL blood tests - that includes most B complex

If ferritin is low getting GP to do full iron panel testing for Anaemia

[SlowDragon Administrator in reply to Yazz1]

Important to test for both TPO and TG thyroid antibodies

As 80-90% of primary hypothyroidism is due to autoimmune thyroid disease,(Hashimoto's ) high antibodies are likely

If these are high then look at strictly gluten free diet for 3-6 months, if it helps stick with it......before considering T3

Once vitamin levels are all optimal retesting thyroid TSH, FT3 and FT4

If FT3 remains low then see a recommended thyroid specialist for private prescription for T3

[Yazz1]

The ones I'm taking are from supplements you. It contains L Tyrosine, vitamin B12 magnesium selenium copper zinc iodine kelp (150mcg) molybdenum, manganese. Feel more alert not so tired, just so cold even with taking vitamins D3