NDT Information?

[Huddy1234]

Hi All,

I am currently on a small dose of Levothyroxiene - I've been recommended NDT by someone who takes it and was wondering if anyone can share any advice on this please?

Thank you x

[SeasideSusie Remembering]

Huddy1234

What is your "small" dose of Levo and what are your latest test results? It's possible that you may be undermedicated and being on an optimal dose of Levo may be fine for you. It really is easier if Levo works for you as there is no cost and your GP will do your blood tests.

And of course, we need optimal levels of vitamins and minerals for thyroid hormone to work properly, so you really could do with testing Vit D, B12, Folate and Ferritin.

If you do take NDT then you will have to self fund, your GP may not support you and then you will have to fund your own blood tests as well.

[Huddy1234 in reply to SeasideSusie]

Thank you for your reply.

I was diagnosed about 3 years ago (as I was just reaching the stage of having an under active thyroid apparently) and put on 25 Levo....... not felt much improvement so this year had more bloods done - when the results came back I was told no further action was needed so am currently still on Levo 25.

2015 - Thyroid 6.46

2018 - Thyroid 3.41

2015 - T4 12.3

2018 - T4 9.6

2015 - Vtamin D 121 nmol

2018 - Vitamin D 84 nmol

2015 - Vitamin B12 464ng/l

2018 - Vitamin B12 237ng/l

2015 - Serum Creatine 94

2018 - Serum Creatine 77

2015 - GFR 56

2018 - GFR 60

2015 - Serum Sodium 143

2108 - Serum Sodium 136

2015 - Serum Potassium 4.3

2018 - Serum Potassium 5.0

2015 - Serum Urea 3.9

2018 - Serum Urea 4.7

2015 - Serum Thyroid Antibdy 348

2018 - Serum Thyroid Antibody (test not done)

2015 - Serum LH 56

2018 - Serum LH (test not done)

It doesn't look like I had any tests for T3 - is this something I should be asking for?

Thank you

[SeasideSusie Remembering in reply to Huddy1234]

Huddy1234

Oh dear, another doctor who doesn't know how to treat hypothyroidism. You are undermedicated and that will be causing symptoms. You don't need to consider NDT at this stage, you just need your Levo increased and to get your levels where they need to be.

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.

So your TSH is too high, even though it has reduced since diagnosis and starting Levo, but it is nowhere near low enough.

FT4 is difficult to interpret without the reference range, but we can see it has reduced and may now be under range. It needs to be near the top of the range.

FT3 is very useful but rarely tested. Not important just at the moment, you need to get your TSH down and your FT4 up and maybe then get FT3 tested to see how well you convert T4 to T3.

So you need an immediate increase in your Levo, 25mcg now, retest in 6-8 weeks, another increase of 25mcg, another retest in 6-8 weeks, etc, until your levels are where they need to be for you to feel well.

In support of your request for an increase in your dose of Levo, use the following information from ThyroidUK. Tell your GP that you have contacted NHS Choices recommended source of information regarding thyroid disorders (which is ThyroidUK), don't mention the internet or forums as they don't like that.

thyroiduk.org/tuk/about_the... > Treatment Options:

Dr Toft 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)."

Dr Toft is past president of the British Thyroid Association and leading endocrinologist.

You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

**

2018 - Vitamin D 84 nmol

The Vit D Council recommends a level of 100-150nmol/L. Your level is not low enough for your GP to prescribe so you would be best buying your own D3 and taking 2000-3000iu daily. Retest in 3 months.

When you've reached the recommended level then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3 as recommended by the Vit D Council -

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

2018 - Vitamin B12 237ng/l

Your B12 is on the low side according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Do you have any signs of B12 deficiency - check here

b12deficiency.info/signs-an...

If you do then you should ask your GP to test for B12 deficiency/pernicious anaemia. If not then you could supplement with sublingual methylcobalamin lozenges and I would use 1 bottle of 5000mcg strength (one lozenge daily) then reduce to the 1000mcg strength. When supplementing with B12 we need a good B Complex to balance all the B vitamins. Recommended here are Thorne Basic B and Igennus Super B. Don't supplement either of these if you have any symptoms listed in that link, you will need testing first and you may need B12 injections before starting the B Complex.

You don't have a folate result, B12 and folate work together. However, if it is less than half way through it's range then the B Complex will help raise it.

**

2015 - Serum Thyroid Antibdy 348

Even though your antibodies haven't been retested, there is no need because once you've had a positive test there is no further need to test. Raised antibodies confirm autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

**

It's also important to have Ferritin tested as low ferritin means that thyroid hormone can't work properly and it also causes symptoms.

As there are no reference ranges with your results, I can't comment on those not mentioned here.

[Huddy1234 in reply to SeasideSusie]

Thank you so much for your detailed reply...... I really appreciate you taking the time.

I literally have just come off the phone to a doctor and he has upped my Levo from 25 to 50 so that's something I suppose - then have to have blood done in 3 months time.

A friend of mine has the B12 injection and said this is such a massive improvement for her energy levels and general well being......I asked my doctor on a previous visit if it was something I could try and he was adamant my levels were "In Range".

Regarding my Vitamin D I have started taking a daily supplement D3 but only started in April so will give it time.

[SeasideSusie Remembering in reply to Huddy1234]

Huddy

3 months is too long. Normal protocol is to retest 6-8 weeks after a dose change. I would make the appointment for that time.

As for B12, it is symptoms your GP should be going by not the fact that you are "in range". Check the symptom list, if you have any then see your GP with your list and he should then test for B12 deficiency and pernicious anaemia. If you don't have any then you could supplement with the methylcobalamin lozenges.

[silverfox7]

You need to find a doctor who knows how to read and react to results properly. 25 is an extremely low dose given to elderly people or those with a known or suspected heart problem. You should have been told to return after 6-8 weeks-the time needed to get the full impact of a new dose into your body and then if need and increase-which you should have had, retest after another 6-8 weeks and this is repeated until you are on the correct dose for you. Most don't feel good until the TSH reading is nearer one. Were you only tested for TSH? That does not tell you anything like the full picture.

Have a look at the Thyroid Uk site-they run this forum-read more about what having a thyroid problem means and the correct way to treat it. Most people do well on Levo but of course they tend not to post on here, they are too busy enjoying themselves. Many do come on here and say they are interested in alternative treatment and the majority are like yourself, badly treated and left to in time feel much worse.

[Huddy1234 in reply to silverfox7]

Thank you for your reply.

I literally just had a call back from my GP and he has increased my Levo from 25 to 50, told to take for 3 months then have a full blood count done again.

I will take a look at the site you suggested - just fed up with the fatigue side of this, i'm 46 but feel like i'm 86.

[SlowDragon Administrator in reply to Huddy1234]

Following on from SeasideSusie excellent reply

Your high antibodies means you have Hashimoto's

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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps 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

Ideally ask GP for coeliac blood test first

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...

[Huddy1234 in reply to SlowDragon]

Thank you for your reply.

I have learned more in a few answers on this site than in 3 years at my GP's.

Hashimotos has never been mentioned to me before - I was aware I had high antibodies and wondered how this maybe affecting me!

Being polite as I possibly can - I think my stomach maybe affected as most times, straight after dinner/lunch, I need the bathroom...... I think we suffer with symptoms for so long they tend to become the norm (if that makes sense).

[SlowDragon Administrator in reply to Huddy1234]

Insist on coeliac blood test then, from GP before going strictly gluten free.

Otherwise, if you get significant improvements on gluten free diet they want you back on gluten to test for coeliac (irritating in the extreme and many refuse)

If coeliac blood test is positive you will have to remain on gluten until endoscopy (should be max of 6 week wait). If negative, you can change to strictly gluten free diet straight away.

Majority of us with Hashimoto's are not coeliac, but something similar that there's no current test for

Also politely insist on folate, ferritin testing and full testing for Pernicious Anaemia (your B12 is likely low due to Hashimoto's, but again need to get PA testing before starting any B vitamins

[SlowDragon Administrator in reply to Huddy1234]

NHS guidelines saying standard starter dose is 50mcgs

beta.nhs.uk/medicines/levot...

Nice guidelines saying how to increase

NICE guidelines saying how to initiate and increase. (Testing should be after 6-8 weeks, not 4)

Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

[silverfox7]

Nothing acts quickly in the Thyroid world and we can't speed it up so loads of patience is needed. But loads of things to learn to improve matters so keep posting with question, results ranges and we can help you through this but don't try to do everything at once. In fact better to space things a bit so you can tell whether you have any problems, doing several things at once makes it difficult to pinpoint a problem should you have one so keep asking questions-best way to learn and remember nothing is too trivial-we have all been where you are!

Always include ranges as they differ from lab to lab so it's guesswork without them. It's not always an easy ride and the fine tuning isn't always easy but hopefully you will notice some improvements soon. Might be an idea to keep a diary, wish I did, and note results alongside disease and may be any dietery changes along the way keep an eye on improvements in symptoms as well. Hope things go well and welcome to the forum!