NDT-LEVO

[foxglove]

Does any one know what the recommended starting dose of NDT is? I am on 25mg levo but although my level (TSH) in range I don't feel "right" and have obtained thyroid-s 60mg which says starting dose 30 mg, ok but it means i will have to split a tiny tablet!

[greygoose]

You will have to split a tiny tablet, yes. Starting on 60 mg (1 grain), considering it contains T3 and you've only been used to 25 mcg T4, will be too much. But, you can increase after two weeks.

How long have you been on 25 mcg levo?

[foxglove in reply to greygoose]

Thanks, I thought so, been on levo for about 12 years but had a few try's along the way of NDT, but found it too powerful. Looking back I probably was taking too much. Can't really remember but I'm pretty certain it was more than 30 mg!!!

[shaws Administrator in reply to foxglove]

Have I misread? That you've been on 25mcg of levothyroxine for 12 years? This is a supplemental dose as usual starting dose is 50 mcg and every six weeks it is increased by 25mcg until TSH is 1 or lower but - most important - that clinical symptoms are relieved.

I think you will find NDT good for you and the following may be helpful. This scientist/doctor would never prescribe levothyroxine only NDT or T3 for patients who had Thyroid Hormone Resistant (which means they need larger doses of hormones than others would need).

drlowe.com/thyroidscience/C...

[foxglove in reply to shaws]

Hi shaws, no you have not misread!!!! When I first started Levo TSH and I think T3 also tested now it's only TSH. My TSH (2.4-3.7)reading s always in a range that suited dr. when I said I would like reading to be nearer 1 of course got no agreement. I have had many other probs to deal with including husband having Alzheimer's...looked after him myself for about 8 years which took it's toll, then i had heart failure and had valve replaced (TAVI procedure as I was too far gone for open heart) Husband now in care home - daughter sorted this-and I am now getting to try to sort myself...ha-ha. Won't trouble you with any more boring details. Will be sending for private test after Xmas. My vit. B12 etc. oddly enough good

[shaws Administrator in reply to foxglove]

You've had an awful time with burden of unwell husband too. Let's hope you can also find a way to optimally treat yourself so that you don't deteriorate.

Regards

[foxglove in reply to shaws]

Thanks, I don't feel husband was or is a burden I just feel I'm a bit of a failure that I couldn't look after him as well as I might have done! It is ME TIME now however and I'm sure I will get sorted. Hope you are ok.

[shaws Administrator in reply to foxglove]

I apologise for using the word burden as a more appropriate one would be supportive. Many of us could be in the same situation and you've done your best and as much as your body could do.

[SlowDragon Administrator]

Can see from your other posts that your an older lady....but being left on such a tiny dose of Levothyroxine seems likely cause of problems

What was you latest test results?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Are your vitamin levels regularly tested?

Important to have good B12, folate, ferritin and vitamin D levels

Low B12 is extremely common as we get older

Low B12 can cause numerous symptoms including poor bladder control

Low B12 symptoms

b12deficiency.info/signs-an...

[foxglove in reply to SlowDragon]

Thanks Slow Dragon latest result TSH (Only thing tested) 3.7) and dr. adamant this is ok

I have had the B12 etc. tested because my hb . was a bit low and anaemia suspected but results for the B vits. etc. surprisingly good so no further action on the low hb.

I have had poor bladder control for most of my adult life and it is getting worse as I age. Seeing gp Dec. 20th to get some meds (if gp. agrees) to help . Have used meds. before for this and it does help........ I think I just got fed up taking, but sometimes needs must!. Won't trouble you with details of other probs. - I could go on!

[SlowDragon Administrator in reply to foxglove]

On Levothyroxine the aim is to increase the dose of Levothyroxine slowly in 25mcg steps upwards until TSH is under 2

Most important results are FT3 and FT4

Suggest you get full Thyroid testing

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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 doctort

 please email Dionne at

[e-mail]

If GP still won't increase your dose of Levothyroxine then you will need to go over GP's head and see a thyroid specialist endocrinologist

Email Dionne at Thyroid Uk for list of recommended thyroid specialists

thyroiduk.org.uk/tuk/About_...

New NICE guidelines published last month are clear that GP should be dosing by weight. 1.6mcg of Levothyroxine per kilo of your weight

nice.org.uk/guidance/ng145/...

1.3.6 Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

1.3.7 Consider starting levothyroxine at a dosage of 25 to 50 micrograms per day with titration for adults aged 65 and over and adults with a history of cardiovascular disease.

Have you had cholesterol tested?

High cholesterol linked to being under treated and still hypothyroid

[foxglove in reply to SlowDragon]

Whole thing more complicated than I thought. I will start on low dose NDT and see how I go. Yes I am going to get thyroid etc. tested privately. My cholesterol IS a bit raised so will include that in the testing. Only thing is I will have to wait till January as spent more than I should this month already!

[SlowDragon Administrator in reply to foxglove]

Personally I think you should push GP to increase dose of Levothyroxine first

But if you have already tried this, then seeing endocrinologist privately next step

Your dose of Levothyroxine is far too low. Likely to need at least two increases ...to 50mcg and retest after 6-8 weeks........may be more

It's possible to get Levothyroxine without prescription too

Taking any NDT will result in very low TSH (difficult to explain to GP)

[foxglove in reply to SlowDragon]

Will just tell dr.what I'm up to if necessary!

[shaws Administrator in reply to foxglove]

So many doctors seem to believe that the TSH, once it is 'somewhere' in the range, that we don't need increases.

They are so poorly trained unless they or a member of their family have hypothyroidism.

[foxglove in reply to shaws]

Agree! ...that's why I'm experimenting at my age think I can!!!

[Lora7again]

I started on 1/2 grain for about a month and then increased it by 1/4 after 3 weeks... I probably increased a bit too quickly but I felt ok and if you feel jittery you can always reduce it by a 1/4 again. I got a pill cutter because the tablets are so tiny. I kept the pieces of tablets in a small air tight container but some people keep them in the fridge. Also because I had a jar of a thousand tablets I was advised to put half of them in the freezer. I did not freeze them because I then started to go into remission so I just kept them in a drawer I still have a nearly a full bottle but they will go off in a few months so I will have to throw them away now. Which is a waste when some people cannot get hold of them.

[foxglove in reply to Lora7again]

Thanks Lora7again, when i heard about difficulty in getting NDT, I rashly ordered a large amount but I hope some CAN be stored in freezer!

[TSH110]

I used this guide it is very helpful I found:

tpauk.com/main/article/trea...

[silverfox7]

I can’t take it in that you have been on such a low dose for so long. You must be feeling terrible. I should forget about NDT for the moment and get your levels sorted. As SlowDragon suggests let us know your latest results then it will be a better guide.

Having said that I also feel hypocritical! I was put on NDT when I was first diagnosed. But we were treated differently then as more doctors were familiar with how to treat it. I was given 1 grain and I was on that dose for a few years then noticed the symptoms were returning so he gave me more-another grain. So yes sounds a lot, doubled the dose but that’s how NDT was increased, no tests, no minim dose and working up but I can’t imagine anyone happily letting you do that without having the experience before when this was normal practice.

I’ve always wanted to get back to those days. So I also believe we should not add anything to the NDT but just higher the dose. Ive seen a few add in some Levo and say they are struggling but then lowered the NDT rather than stop the Levo. A month ago my GP was taking my BP and thought she heard an ectopic beat so I lowered my NDT. Was sent for an ECG and no issues-I didn’t lower my dose until after the test. So when I’ve been on it a further two weeks I shall retest. It will be interesting to see if my results are the same as my usual higher dose. If the same then I’m obviously taking enough medication, if not I shall raise it but this time instead of taking a three day rota of 1.75, 1.75, 1.5 I shall take 1.75 every day and see what that does. I also think NDT is more stable as the T3 is taken first so possible only the T3 is actually been used or if not the T3 used first and then T4 to top it up. Having heard if you take a combo, if at the same time our body will take out of both sources so if taken at the same time then may be not getting such a high dose of T3 as taking T3.

But first, whatever you feel may be best, I should have a blood test to show where your current reading are then you can decide which path you want to go down, Having looked at NDT before and not thinking your were suited then you may prefer to taking a higher dose of T4 if results suggest you were under medicated. But also be aware that once you are on T4 only then your results will show if you are converting well if you get both T4 and T3 tested together. Once you are on T3 only or where it’s not a ‘normal’ dosing then you can’t tell from your readings whether your conversion is good or bad as you no longer have a comparison.

[foxglove in reply to silverfox7]

Thanks sounds complicated. If only gps more helpful!

[silverfox7 in reply to foxglove]

It’s not so much complicated but I’ve may be tried to cover too much but I would imagine now it would be very difficult to take NDT with no testing as over the years the tests have become a necessity because very few are up to speed with how it actually works.

[foxglove in reply to silverfox7]

Now that I've had more of a thought about it, I agree that it is not really so complicated - maybe a degree of using a bit of common sense ...and a lot of trial and error. I have lost a lot of faith in the present run of gps. that we have now but I'm pleased to say the lady I'm managing to see on a regular basis goes a lot on "how do you feel " I never thought I would prefer a lady doc. (been brought up on man is dr.) but the men we have in our practice now make me sad!!! I am a bit of a coward and am going to keep the 25 mcg levo and add in one quarter NDT for a bit and see what happens

[silverfox7]

If I was in your shoes I would get tested and share your results on here but then stick to Levo and raise slowly if that is what comments suggest and get to know more about how you and your body feels. As I suggested above I don’t think Levo and NDT can work together. They may live together short term but I have doubts of always being harmonious. But do let us know how you get on, you never know but you may change my thinking!

But first get tested and post your results to get a baseline.

[foxglove in reply to silverfox7]

Thanks for your opinion I am cautiously trying levo and NDT together - just for a short time...not everyone thinks they disagree. After all if NDT contains T4 (which I understand levo is) I would think they would work ok in tandem. As I say anyway only combining for a short time (6days or so) and then perhaps move over slowly to entirely NDT. Fortunately my body tolerates most meds. well - it is not the first time I have played around with different ones! I think we will have to disagree on the levo/ NDT combination but will still be friends!

[silverfox7]

It’s not so much what is in them it’s the fact that they are in more that one tablet so your body takes a bit from each tablet instead of starting on the T3 in the NDT. At the moment it’s a feeling I have from reading many posts and seeing a trend in what individuals have said gives issues.

[foxglove in reply to silverfox7]

As I think best to agree to differ...we're not all the same, and I appreciate you following the trend that speaks to you. I am aware (honestly) that I will be taking a bit from each tablet - T3 alone from NDT + some T4 but from seeing tends that I see I'm not alone in doing this! I am being careful (again honestly) I do understand your concern however

[silverfox7]

Here’s to good health to both of us!

[foxglove in reply to silverfox7]

Yeah!!! xx