How to request for NDT

[sarahger]

I have been really unwell for a few months now and have also noticed that I do not convert to T3 properly, even with a supressed TSH of 0.06.

I will be seeing an Endo in June and I was wondering how easy it will be for me to ask to be put onto NDT.

[Helena877]

I’d call up the Endo’s secretary in advance and ask if the Endo ever prescribes NDT or T3.

There is also a list that can be obtained from Thyroid UK if you go onto their main website and request via email.

[sarahger in reply to Helena877]

That's amazing advice! I will definitely do that. Thank you Helena

[shaws Administrator]

We used to be able to get NDT prescribed. The NHS have now stopped this and also T3 quite recently. At present only levothyroxine is prescribed.

For a list of Endocrinologists, I think they are mainly private email Dionne at:

[e-mail]

I think the majority are Private.

[sarahger in reply to shaws]

Thank you very much! I really appreciate it!

[SlowDragon Administrator]

Before you see any consultant would strongly suggest you get full Thyroid and vitamin tests

Low vitamin levels are extremely common

Are you on strictly gluten free diet as you have Hashimoto's

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also request list of recommended thyroid specialists, some will prescribe T3 or NDT (mostly private prescription)

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3

rcpe.ac.uk/sites/default/fi...

[sarahger]

Wow! Thank you so much for the amazing information.

I am on a very strict no gluten and no dairy diet. However, I started losing my hair in January and got a full blood test done. I was on 125mcg Levo and my TSH was 0.08 and my T3 was 3.2. My B12, ferretin, Vit D all came back pretty good.

My doctor decided to reduce my dose to 100mcg but I still felt very unwell and lost more hair, lashes and eyebrows. I also started to have heart palpitations. They further reduced my dose to 75mcg and after 3 weeks I suddenly had scaly skin which only lasted for one day and then all of a sudden I started getting hyper-pigmentation all over my body including my face. I am almost two shades darker and my hair has continued to fall out in chunks. I also suffer with insomnia and irregular periods. I also have continuous burning sensation in my hands and feet. They tested my TSH only again and it was 0.84. They refused to test my T3 and T4

They ruled out Addison's disease.

Yet they have no explanation for the sudden hyper pigmentation all over my body and all the other symptoms.

I feel extremely down about the way I look. I almost look like a totally different person and I feel awful.

[SlowDragon Administrator in reply to sarahger]

Well you need to add the ranges on those results

TSH. 0.08 - obviously low

FT3 3.2. Depends on range, but this looks extremely low

As dose has now been reduced futher it's likely FT3 is even lower and probably below range

Hence sudden symptoms.

As you have gluten intolerance you are quite likely to need addition of small dose of T3

What are actual results and ranges on Vitamin D, folate, ferritin and B12 ?

Palpitations can be due to UNDER medication.

Burning hands and feet is possibly peripheral neuropathy, common when under medicated and caused by low B vitamins

drgominak.com/sleep/vitamin...

Vitamin D needs to be up around 100nmol for most with Hashimoto's

B12 and folate towards top of range

Ferritin at least half way in range

[sarahger]

I am taking 100mcg. I questioned my doctor as well as the private endo about exactly that, that if my T3 was so low on 125mcg, wouldn't it drop further when I reduce my medication? They completely dismissed that question. All they said was that my T3 of 3.2 was within range as their ref range is 3.1 - 6.8. My T3, exactly a year ago was 5 and i felt great and had thick hair and no other complaints.

Vit D - 118 nmol

Serum Ferritin - 89 ug/L

Serum Folate - 5.8 ug/L

B12 - I can't find my results for this but I remember it was closer to the upper reference range

I did mention the burning sensation to my doctors several times and they keep referring to the blood test I took in February and tell me that my B12 was really good.

I did also mention to them that I did change my diet. I have been a pescatarian for a year now but since the blood test I haven't had any dairy. I only occasionally eat fish.

The doctors make me feel crazy. Every time i mention my concerns about my T3 being low, they grin as if to think i have too much time in my hands to research so much.

I did find that diffuse hyper-pigmentation could be due to addisons disease, hyperthyroidism or with an excess of iron in the body.

I am wondering whether the diffuse hyper pigmentation could be due to hyperthyroidism? I started sweating through the night recently too.

I did however notice that when i reduced my dose to 75mcg, my hair stopped falling out and my lashes were growing again.

Sorry, I know this a very complicated case.

[shaws Administrator in reply to sarahger]

Doctors who are supposed to know more than their patients, continue to make them very, very unwell by ignoring the T3.

Levothyroxine is T4 - an inactive hormone which has to convert to T3, therefore we need an optimum dose and they should test your Free T4 and Free T3 if we complain.

We cannot function at all without T3, but we can without T4. You state "All they said was that my T3 of 3.2 was within range as their ref range is 3.1 - 6.8". In fact your T3 should be nearer 6 than the bottom of the range, so it comes as a great surprise that the people you are relying upon to heal you, are complicating matters by the patient not having sufficient T3. We have millions of T3 receptor cells, they need T3 in them. Our heart and brain have the most.

Like many people on this forum, they've got fed up with being mismanaged and kept unwell. They've gone the self-medicating route.

The aim is a TSH of 1 or lower with a FT4 and FT3 nearer the upper part of the range. You should feel well with no clinical symptoms.

I am uncertain about your pigmentation and hope it will resolve when you are on optimum meds. All of the following should be optimum, and also put the ranges of the tests as lab differ and it makes it easier to respond.

TSH 1 or lower - FT4 and FT3 nearer the top of the range. Symptoms:

thyroiduk.org.uk/tuk/about_...

[sarahger]

Wow, you have been so helpful and reassuring. Thank you so much!

Sorry here are the ref ranges.

Vit D - 118 nmol

(50-140.00 nmol)

Serum Ferritin - 89 ug/L

(13.00- 150.00ug/L)

Serum Folate - 5.8 ug/L (3.9 - 20.00ug/L)

I just don't know how I am able to get someone to listen to me and prescribe T3 or adjust my meds when they consider me falling into the "normal" range.

I am seeing an Endo in June and is there a way I can get them to consider supplementing me with T3?

Thanks again for your detailed responses! I have felt so helpless and you have really made a difference!!