CCG/NHS assessment for Liothyronine by Endocrinologist. Help please.

[TSH86]

Hi all,

I am new here and would very much appreciate any advice.

I was diagnosed with hypothyroidism 11 years ago. Levothyroxine made me feel more unwell and I was prescribed Liothyronine.

Several attempts at Levothyroxine over the years and recently (in last year) I was told by my Endo Liothyronine may not be available so another forced attempt at thyroxine I could b early manage 25mcg and( 20mcg Liothyronine) Amongst other horrible symptoms my face looked grey !! I am ok on Liothyronine alone.

Last week my GP said I will be assessed by a Specialist Endocrinologist on the need for Liothyronine and that all patients on this medication are being assessed. I am extremely worried as I know others in a similar position probably will be too.

I would very much appreciate any advice from anyone particularly people who have already been assessed on their need for Liothyronine.

I am unable to afford private treatment as I am currently not working and looking after my Mother who is sadly suffering final stage of Parkinsons.

Thank you.

[SlowDragon Administrator]

You need to fight hard to keep current NHS prescription

It is possible to fight and win this

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

Are you gluten or dairy intolerant

Or coeliac

All these can impair conversion of FT4 to FT3

The DIO2 gene test is worth considering. If you test positive it is strong argument for needing T3

thyroiduk.org.uk/tuk/testin...

Recent debates in parliament- especially The motion of regret by Lord Hunt on June 20th

Write to your own MP, Lord Hunt and Lord O'Shaughnessy

theyworkforyou.com/search/?...

BTA say if patient is well on T3 it should not be stopped

british-thyroid-association...

[TSH86 in reply to SlowDragon]

Hi SlowDragon

Thank you for info much appreciated.

I have Hashimoto Thyroditis.

Thyroid antibodies are high.

D102 not tested. Should I request this test from GP or are these done privately.

I am also considering delaying my appointment with the endo as am not well enough to travel to attend.

[SlowDragon Administrator in reply to TSH86]

DIO2 not Available in most CCG areas .....yet

Best to do it yourself privately incase its negative

[TSH86 in reply to SlowDragon]

Thanks SlowDragon. I will get it done privately.

[SlowDragon Administrator in reply to TSH86]

So are you on strictly gluten free diet?

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

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

Low vitamin levels affect Thyroid hormone working

Had vitamin D, folate, ferritin and B12 tested recently. If you add your most recent results and ranges members can advise

With Hashimoto's, we often need to supplement regularly to maintain optimal levels. What supplements do you currently take?

[TSH86 in reply to SlowDragon]

Thank you again. I am taking vit d and calcium. Vit d and b 12 levels are ok.

I will look up folate ferritin and the others and post.

I'm not sure if should be asking but is it possible to contact you by phone SlowDragon as my thyroid levels are a bit complicated to write about. I would really appreciate discussing them.

[SlowDragon Administrator in reply to TSH86]

Put up a new post and members can advise.

Are you confirmed as having low calcium? Or is that self supplement

Most people do not need extra calcium especially when supplementing vitamin D

Raising vitamin D levels naturally increases calcium levels, so much so this is why Vitamin K2 Mk7 is recommended to direct excess calcium to bones

Retesting twice yearly via vitamindtest.org.uk




Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...


betterbones.com/bone-nutrit...

easy-immune-health.com/magn...

Recent post this morning about calcium you might find helpful

healthunlocked.com/thyroidu...

[TSH86 in reply to SlowDragon]

I haven't had my calcium level checked for about a year but will do and will look at the info in your post. Thanks again.

My vit d level 85

Vit b level 236

Thyroid anti bodies 75 IU/ml

[SlowDragon Administrator in reply to TSH86]

You need both B12 and folate tested together

B12 looks low. What's the range?

No ferritin test?

Vitamin D is possibly too low. Aiming to improve to around 100nmol. Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement for 2-3 months and retest. It's trial and error what dose each person needs. Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk




Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...


betterbones.com/bone-nutrit...

easy-immune-health.com/magn...

Are you on strictly gluten free diet? Or tried in in past?

[TSH86 in reply to SlowDragon]

It looks like I need another appointment with GP for

B12 and folate together.

Ferritin.

Yes SlowDragon my B12 is low. Range I believe is 190 - 900.

I had never heard of vit d spray and didn't realise how these things impact gut function so thank you.

I will read all the links you have sent carefully and hopefully over a period of time see some improvements.

Just so worried about the assessment by Endo on Liothyronine. I am compiling all the facts as to why I cannot survive without Liothyronine. Which they should already know but their focus is on costs and not individuals.

Thanks again

[SlowDragon Administrator in reply to TSH86]

If you read my profile, I made absolutely no progress until strictly gluten free and addressing vitamin deficiencies. Just like hundreds of others on here

I couldn't have made progress without all the invaluable knowledge on here

Endocrinologists are completely disinterested in vitamin deficiencies or the gut and gluten connection

A very few do realise we often/usually need to gluten free, the rest might test for coeliac, but if negative never suggest that gluten intolerance may be an issue

Low vitamin levels are always gut connected

GP may just say B12 is in range. But push to get folate and ferritin tested. Ask for Coeliac blood test too (helps concentrate their mind on gut issues)

It is possible to hang on to Liothyronine prescription

[TSH86 in reply to SlowDragon]

I really appreciate all this valuable advice and wish I had joined here earlier. Thank you so much.

I have recently requested quite a few tests that my GP and especially endocrinology should have done a long time ago. Thyroid Ultrasound, antibodies, cortisol, vit b12.

I will now request the ones you have mentioned and will read your profile.

Thank you SlowDragon and everyone who's posts I may have read.

[Colliemad]

Hi. I don't know where you are from, but I have just had my liothyronine reinstated. They took me off for a trial which obviously didn't work and now I have it prescribed by my Consultant and not my GP as it is now classed as a specialist drug. I wrote to the CCG and that helped. I don't know your situation but you can always go to your local CCG . Hope this helps

[TSH86 in reply to Colliemad]

Hi Colliemad, That is great news !!!. So pleased you got your liothyronine back. It gives me some hope. Thank you for posting.

I have just completed an email to the CCG and sending it today.

I have given them them a lot of relevant information my GP did not and have included the BTA statement.

I am also awaiting my D102 test results.

Really appreciate all the great advice I have received on here.

Thanks Colliemad and all you good people.

[Lulu2red]

I was put on a trial of T3 only by a Consultant Cardiologist, was so worried the Endocrinologist would not play ball as he had told me previously that although the addition of T3 may help me it's not available in the UK! Well that's a lie. Anyway he has capitulated since the edema in my legs has gone, brain fog gone, no more pain all over my body. They should not deny you if you can show that you are well on T3. I did pay privately for DI02 and tested positive. They cannot argue with science since they spout so much to us that blood tests are the be all and end all, they can't then refute gene test. I still have grumbles from the pharmacy about the cost. This really annoys me it's not coming out of their pockets. I have suffered for 19 years on T4 which they think is a universal hormone that works for everyone which is entirely not the case. What is worse they know it! I recently had my dose increased to 30 mg and the Secretary at my GP refused to dispense until the Endocrinologist sent a letter confirming it. In a way I hope you do test positive for DI02 gene. I know I was anxious waiting for the results. One piece of advice I would ask you to consider. Make sure you keep copies of the Endocrinologist's letters. NHS Endocrinologist's move around different hospitals. The one I saw on 1st October has already left. You need continuity when on T3. Also if he increases your dose ask him for a prescription there and then to dispense. Tell him you have run out completely. I try to put my script in early so I have extra. I also bought some Tiromel from Turkey 6 months worth just in case they ever try to take my NHS prescription away. You don't need to get a private prescription in Turkey at the moment. Try not to stress as it will do your thyroid no good. You have enough on your plate and I would let them know you are a carer. You cannot get DI02 test on the NHS, I asked because I want my children tested.

[TSH86]

Hi Lulu2red, Lucky your Cardiologist started you on T3. My first Consultant 2007 was great. Wonder if he would be the same now. He started me on T3 and later diagnosed vit d deficiency. GP didn't have a clue.

I get similar symptoms as you brain fog, pain in body. My eyes go very strange and numbness in scalp.

I have luckily kept all correspondence from Consultants and am really hoping the CCG will take note of Consultants opinions, which clearly state I cannot tolerate T4 and do well on T3. I have been through endless trials of T4. Simply cannot do another one.

I managed to get some Tiromel !! My neighbour kindly bought a packet of 100 tabs for £2 !!! (Holiday in Turkey ) I will try at a later date, when this nightmare situation is over.

My GP has stopped prescribing and I have had to request an urgent prescription from Consultant, who did give me one month's supply. Feel like I am begging for a medicine that is crucial for my health.

I have written to them regarding this and the NHS Duty of Care.

My pharmacist also expressed his surprise at my prescription of T3.

Thank you for the all the other advice and I hope you manage to get the tests done for your children.

Take care xx