Thyroid UK

GP WILL NO LONGER PROVIDE MY T3

just got a letter from them saying that southend hosp endo will write to me- but i dont even go to southend hospital i go somewhere else.. this is such a big messup. so who are we going to write to? btf and the othee biase donand MPs for what its worth...

bsuh.nhs.uk/wp-content/uplo...

24 Replies
oldestnewest

If you are on fb check out itt page lots on there. I would write back quoting Nhs consultation outcome. Should be reviewed by an endo before changing. Why did you put the Brighton advice up? Does your ccg refer to it? where are you? Which CCG?

Reply

I would also quote the Concordia response which involves MHRA and send that too .....its furthur up in this forum

Reply

What is ITT?

Reply

Improve Thyroid Treatment campaign on fb.

1 like
Reply

They are obliged to provide T3

They MUST refer you to an endocrinologist before even considering stopping prescribing (which should take months)

Print this and enclose with a letter to your GP (make it clear you are sending a copy of letter to your MP too )

psnc.org.uk/wp-content/uplo...

Relevant sections

Advise CCGs that individuals currently prescribed liothyronine should be reviewed by a consultant NHS endocrinologist with consideration given to switching to levothyroxine where clinically appropriate.

Advise CCGs that a local decision, involving the Area Prescribing Committee (or equivalent) informed by national guidance (e.g. from NICE or the Regional Medicines Optimisation Committees), should be made regarding arrangements for on-going prescribing of liothyronine. This should be for individuals who, in exceptional circumstances, have an on-going need for liothyronine as confirmed by a consultant NHS endocrinologist.

The British Thyroid Association (BTA) advise that a small proportion of patients treated with levothyroxine continue to suffer with symptoms despite adequate biochemical correction. In these circumstances, where levothyroxine has failed and in line with BTA guidance, endocrinologists providing NHS services may recommend liothyronine for individual patients after a carefully audited trial of at least 3 months duration of liothyronine.

Liothyronine is used for patients with thyroid cancer, in preparation for radioiodine ablation, iodine scanning, or stimulated thyroglobulin test. In these situations, it is appropriate for patients to obtain their prescriptions from the centre undertaking the treatment and not be routinely obtained from primary care prescribers.

Why T3 should not be stopped

healthunlocked.com/thyroidu...

Typical posts after T3 stopped clearly demonstrating how vitamin levels collapse when T3 is removed

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

3 likes
Reply

Our CCG are being brutal - no discussion - threatening GPs with breach of contract if they prescribe and including replacement prescriptions for levo in the letter. No review - no medical advice. Flipping ridiculous. Using outdated advice as in the post above. I have approached the CCG to raise this as an issue rather than letting them pick us off one by one - their immediate response was to contact my surgery to look at my medical history. I have contacted patient groups for their support. I will use your info when we get a platform.

2 likes
Reply

loueldhen

Which CCG is this?

If you do Facebook can you contact Improve Thyroid Treatment group on Facebook and see if they have your CCG included in list

They have a great number of letter templates for writing to CCG, MP and GP to fight this

Are you gluten intolerant, have you had a DIO2 gene test.

Do you already need B12, folate, ferritin or vitamin D supplements

These deficiencies get much, much worse without T3. NHS will then have to provide prescriptions and B12 injections at additional costs

Reply

High Weald Lewes Havens. I have fed ITT the info and will use their stuff when it's time thanks.

I am way better without gluten. I did 23andme I don't have the DIO2 mutation. Haven't done my vits for a while but feel ok on my T3. I would be stuffed without it and will fight them to the death over it.

1 like
Reply

So having gluten intolerance and leaky gut as result of Hashimoto's is recognised reason for needing T3

Swale CCG in Kent have apparently acknowledged this.

You do need to ensure vitamins stay optimal

1 like
Reply

I rotted my gut before my hypo became apparent. About 30 years ago. Spent 18months asking the Nhs what my problem was but got no answer and then discovered the cure myself. Went on a meat fish veg water diet. Relied on it ever since when my health isn’t good. Hypo for about 10 years. Will look at swale. I remember reading one ccg had revised its policy. They all need to.

Reply

Also page 114 in this weighty document

england.nhs.uk/wp-content/u...

1 like
Reply

theguardian.com/society/201...

there are no tags here so i dont kno wwho is talking to me-- the brighton advice came thru to me today so i posted it-- i got a letter today from my gp who wontprovide t3, i see an endo and been on t3 AND t4 fo ryears and in the article it says people on combination wont get it.

Reply

bluepettals2,

There are no tags because everyone (bar reallyfedup123) has responded directly to you as the Original Poster (OP). And I read reallyfedup123's reply as just adding to loueldhen's response.

Reply

oh i see thanks

Reply

i have b12 inject every 3 months and lack vit d i wa sprescribe dt3 by endo at hospital

Reply

So are you still on Vitamin D supplements

Interesting webpage here saying daily B12 is better than injections only every 3 months

aafp.org/afp/2003/0301/p979...

B12 generally

drjockers.com/warning-signs...

Methylmalonic acid and B12

ncbi.nlm.nih.gov/pubmed/115...

Using test of Homocysteine levels to check for low b12

b12-vitamin.com/homocysteine/

veganhealth.org/b12/hcy

What about folic acid supplements?

Or do you take a good vitamin B complex ?

Reply

Pettals,

Does your GP prescribe the T3?

1 like
Reply

clutter no my old endo did andthe new endo continued

Reply

but the gp prescibed on advice from endo

Reply

Pettals2,

I would write to your GP (cc your MP) and tell your GP that the CCG does not have the authority to tell GPs what not to prescribe and you believe your GP is in breach of GMS contract by with-drawing treatment you have been told you need. Say you have been well on Liothyronine and wish to continue taking it. Attach the BTA guidance for patients and GPs.

The BTA issued guidance that patients doing well on T3 should not have their prescriptions with-drawn. See FAQS for patients and GPs in british-thyroid-association...

CCGs do not have the authority to tell GPs what not to prescribe. Individual GPs, not CCGs, could be found in breach of the General Medical Services contract if they do not prescribe treatment patients have been told "they need".

bmj.com/content/358/bmj.j36...

The GPC has warned that GPs would be in breach of the GMS contract and could get into legal trouble by following the orders and refusing to prescribe patients treatments they have told them they need.

gponline.com/gpc-warning-ig...

CCGs are expected to do impact consultations with the public and stakeholders before implementing change. Failure to do so leaves them open to legal challenge so check whether your CCG did an impact consultation before advising your GP to withdraw T3.

mills-reeve.com/files/Publi...

Reply

thanksclutter- the irony is i have an endo inkent i am inessex essxendo are total rubbish, my endo asked gp tp give it but the silly docotors have sent me an endo-- a rubbish one insouthend- i do not need to go therewhen i have my own decent one in another hospital who i hope willsort this next week. i am keep ing your post in case i need it- i have already written to mp, thanks clutter- ps i like thesound of lintablys longpost 6 months ago about sanofi/ other brands much cheaper than ours.

Reply

Pettals,

It sounds to me as though your CCG may be instructing practices and hospitals in its area to withdraw Liothyronine and that's why they've made you an appointment at Southend. Is your endo in Kent NHS?

Reply

yes clutter i am in kent and i want to stay there, southend endo are abso lute rubbish.

Reply

Pettals2,

Is the Kent endo NHS?

Reply

You may also like...