Discontinuation of Liothyronine

[Denne]

I have wrote to the manager of the gp practice asking for written confirmation of who stopped liothyronine and why. Pointed out NHS England guide lines as I am a 6year patient under endo on this med. reply,The practice will be looking into the reason for my complaint and will respond as soon as we are able,16April. Still nothing

Complained to ccg they say doctor did not act inappropriately. I also asked for there protocol for prescribing liothyronine as nothing on website. No response.

Endocrinologist does not want to know.

I filled in on line complaint to NHS England.Automated email,Covid takes priority.

Going back to 2014 I was ill on 75mg Levo only.

TSH 4.6 0.30-4.00. T4 13 12-22. T3 3.9 3.1-6.8

In 2014 I finally saw an endocrinologist was given 75mg Levo & 5mg Lio twice a day,it took a while but felt much better.

TSH 0.39 0.3-4.00 T417.1 12-22 T3 4.3 3.1-6.8

I was then given 100mg Levo with 5mg Lio twice a day.

TSH 0.02 0.30-4.50 T4 16. 4 10-22 T3 5.6 3.10-6.80 I was doing great until March this year when probably gp stopped lio. Had my bloods done last week so took no levo for 48hrs. TSH 0.02 0.30-4.50 T4 16.2 10-22 T3 3.8 3.10-6.80,that noted,specialised chem review needed,yes.

-is my T3 suppressed now,does anyone have any ideas of what to do next,does anyone know how I go about going private and a rough idea of the cost. I feel soooo mentally and physically at the end of the road.

[SlowDragon Administrator]

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

[e-mail]

Essential to test vitamin D, folate, ferritin and B12

Vitamins frequently crash down when Ft3 is withdrawn

See GP and INSIST vitamins are tested on NHS

What vitamin supplements are you currently taking?

Do you have Hashimoto’s

Are you on strictly gluten free diet

If not insist on coeliac blood test too on NHS

Underline the extent of return of symptoms since T3 withdrawal

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

[HashiFedUp]

I went private and ended up on NDT. Endo consultant charged £150 for an initial consultation, £75 follow-ups. I have only seen him a few times and I am well for the first time in over ten years! Its worth every penny paying for meds/endos if the NHS won’t. The thing about private endos as well is I can see him or chat to him pretty much anytime and the speed of his response means I got on top of changes quickly. I think many Hashimoto’s patients need to come to terms with the fact that the NHS is not willing or able to adequately fund, research and/ or treat thyroid patients because of perceived priorities in order areas, eg diabetes. For emergency medicine the NHS is amazing but for many chronic conditions, there arent the resources to cover the ever growing population. This is a reality that politicians won’t admit. What a shame. Public private partnerships are the only way forward. Sorry Im off my soap box now!

[DippyDame]

It's an issue that has been debated in both Holyrood and Westminster.

The cost of T3 rose astronomically some time ago, medics maintained FT4 was an appropriate (and much cheaper!) alternative.

This decision has caused many people to become (very) unwell.

Your latest labs show a considerable drop in FT3 post T3 treatment. This may be the result of poor conversion ofT4 to T3 or you may have a form of thyroid hormone resistance.

To optimise conversion vit D, vit B12, folate and ferritin need to be optimised.

If this is not effective you could have a thyroid genetic test to check for the Dio2 polymorphism (snp) which impairs conversion....particularly if you fall into the homozygous group (snp inherited from both parents ). This is done privately - a positive result can sometimes enable the patient to be prescribed T3....not always!

I would be inclined to optimise nutrients first.

Unfortunately it is a long slow process but often the best way forward.

If this does not work then come back and look at the possibility of RTH....which is the last resort

There is much helpful info in this link

thyroiduk.org/

Or, you can buy your own T3 from abroad,.... sadly more difficult during the pandemic. Many members self medicate.

If you start a new post asking for suppliers members can PM you with suggestions.

SlowDragon has already given you advice re endos.

If it all sounds a bit daunting be encouraged that you are not alone...here we are all in this thyroid mess together. Take one step at a time.....I suggest you start with the nutrients.

Find the cause then find the remedy.

Best...

DD

[tattybogle]

the first method any organisation uses to getting rid of an unwanted issue , is to say no/ nothing and hope you get fed up and go away. Its a deliberate policy and it usually gets rid of about 75% of the 'problem' customers very easily.

So even though you're on your knees now, send the same email letters back and keep on doing it until you get a different response.

eventually it may be easier for them to give in, than carry on fending you off.

Ok, if you can afford to , go private , but keep requesting an answer to your question, they are going against the guidelines and they cant actually defend that position, which is why they hope you'll go away. Dont give them the satisfaction.

[mfinn]

I went through the same thing but managed to fight back and had Liothyronine reinstated. If you print off the British Thyroid Association guidelines (2016) - Switching from Liothyronine (LT-3) to Levothyroxine (LT-4)? - and send them to the practice manager of your medical centre with a letter emphasising that this decision is damaging your health you might get somewhere. Which CCG do you come under?

british-thyroid-association...

[Denne in reply to mfinn]

Sunderland ccg,they say gp done nothing wrong,they won’t investigate. Gp says ccg stopped liothyronine.

[mfinn]

Ignore what they say, your GP is lying. You don't need an investigation but a reinstatement of the hormone replacement they've prescribed for years. Tattybogle is right, just keep bothering them and insist they are making you ill. Send a letter, rather than an email, direct to the practice manager and mark it personal, attach copies of the BTA 2016 guidelines again if necessary and if you get a negative reply send another one. With this issue you have to become a terrier and not let go.