Thyroid UK
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NDT or not?

Hi,

I have been on 50mg Levothyroxine for a couple of years now and my symptoms are still in place: extreme tiredness, poor nail condition, low libido. The last time I went to my GP, she arranged for a Vit B12 injection and said they would be followed by more, a short course. She had my blood sampled before the B12 injection. I immediately felt better and was disappointed when I vot a text a few days later saying ‘No further action required’. When I looked at my results on the surgery website, I saw the B vit level was one point below the lowest level and a note to re-test in 3 months! I also had a Medichecks thyroid function test and the results are:

ENDOCRINOLOGY

Thyroid Function THYROID STIMULATING HORMONE 3.34 mIU/L 0.27 - 4.20

FREE THYROXINE 16.9 pmol/L 12.00 - 22.00

FREE T3 4.34 pmol/L 3.10 - 6.80

So,

a/ should I go back to my GP about the B vits

and

b/ Should I give Thyroid S a try?

Any advice would be gratefully received.

Cheers,

Ian Manning

18 Replies
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I may be a bit biased but it's your life matey, what have you got to lose?

NDT was the proven natural treatment for Hypothyroid for nearly 100 years before T4 was synthesized - it's not the snakeoil like the medical establishment profess! they just think they're not allowed to prescribe it! J :D

Edit - B12 - yes go back, it needs to be high in range - have a look at the Pernicious anaemia forum for info (PA needs to be ruled out) & B compex helps.

50 mcg is a low dose, although your FT4 & FT3 are in range, your TSH raised indicates your thryoid is still struggling...

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Thanks for that! Yes, I appreciate what you say but I am just naturally cautious. Would I take the Thyroid S in addition to the 50mg Levo or instead of it? Also very puzzled about the B vit being out of range but the GP not continuing with the course. I think I will go back and query this. Ian

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Hi Ian - I edited my reply above a bit. I feel good on NDT so I'm biased.

You need to sort that B12 first really, are you supplementing too? I find boost B12 spray is good - however you should arm yourself with info from experts..... PA site below (I suggest you join & ask questions)

healthunlocked.com/pasoc

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If you decide to have a trial of NDT....

I just switched from 100mcg levo to 1 grain NDT - so you'd half that - however you may even want to start lower at a quarter grain to get used to the T3 - it can make some feel a bit jittery to start with (palpitations) - I took it with milk the first time, as naturally cautious...

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You're undermedicated on 50mcg Levo with those results. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges.

See Treatment Options thyroiduk.org.uk/tuk/about_...

"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)."

Email Dionne at tukadmin@thyroiduk.org for a copy of the article to show your GP to support your request for an increase.

You need a dose increase. Far better to stick with Levo if it suits you providing you are getting enough. You will have to pay for NDT and also pay for your own tests as your GP probably won't continue to do them if you self treat.

If your B12 is so low, what about your other vitamins and minerals? Have they been tested? Vit D, folate, ferritin! All need to be optimal for thyroid hormone to work.

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Thank you both for the advice. I will go through all you have said more closely in the morning as it’s nearly midnight! Think I will probably take the advice to get the B vits sorted first with my GP. Also, the Medichecks doctor said that hat my TSH should really be in the lower end of he scale, so will ask the GP about that too. Many thanks again. Ian

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Hi Ian, it is so pathetic that the patient suffers with symptoms and yet if the numbers are good, the treatment must be fine. Honestly you have put up with something for two years you should never have needed more than three months. Since you KNOW this is the way it will be, now is the time to decide to remain ill (and you are) or take account for yourself. NDT is a lifesaving hormone which is needed for this condition. Being rather untreated has led to all sorts of other deficiencies which will continue. It's difficult when you don't have medical support but if you can find ways to have your B12, also get D3/K2 immediately since it enhances all other hormones and even without a test you are deficient being that it is wintertime.

Start your education.

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I only feel good with a

TSH of 0.not much

FT3 above 5

FT4 above 12

We're all different but I would say try 75 a bit more may help.

I am on NDT and love it but it's expensive so I wouldn't rule out a bit more levo

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I was in the same boat Ian, and now take NDT, and self-inject with B12. It has made the world of difference. I only regret so much time battling with doctors who either don't care, or have their hands tied behind their backs by a system that doesn't work.

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Where are the results for you vitamins and minerals? Please post them on here.

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Hi. Not sure which ones are which, but here are sample of results from my records!

Serum vitamin B12207 ng/L Abnormal result211 - 911ng/L April 2016!! (No action!)

Serum vitamin B12210 ng/L Abnormal result211 - 911ng/L (Oct 2017. GP comment: 'Comment: (RAA807) - skirting around low end normal, still just about OK- recheck in birthday month" !!!!

Looking back, my B12 readings have never been higher than 251ng/L, which seems way down on the higher level.

Don't know what these below are!

Serum sodium142 mmol/L133 - 146mmol/L

Serum potassium4.2 mmol/L3.5 - 5.3mmol/L

Serum creatinine77 umol/L62 - 115umol/L

Can't find any sign of iron levels, but from blood counts, here are these blood readings from Oct 2017:

Total white cell count5 10*9/L3.6 - 10.510*9/L

Red blood cell (RBC) count4.2 10*12/L4 - 5.6510*12/L

Haemoglobin estimation142 g/L125 - 172g/L

Haematocrit0.43 L/L0.37 - .49L/L

Mean corpuscular volume (MCV)101.1 fL Abnormal result80 - 101fL

Mean corpusc. haemoglobin(MCH)33.5 pg27 - 34pg

Red blood cell distribut width13 %11 - 16%

Platelet count265 10*9/L160 - 37010*9/L

Finally, I can't get a appointment with my GP until 2nd Feb but will definitely question this B12 inaction strongly.

Cheers,

Ian

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Ian1803, Your basic problem is that you're on the wrong dose. It would be very unlikely anyone would feel good with a thyroid panel like that. Your freeT3 and freeT4 are on the floor, when they should both be in the top part of the range. Your TSH is almost high enough to get diagnosed with hypothyroidism from scratch!

50mcg is a starter dose. You should have been given a blood test after 6 weeks and your dose adjusted, and then retested again 6 weeks later. Doctors are just very negligent.

What you need in the first instance is that does increased by 25mcg, the course of B12 injections. And then investigations for pernicious anaemia, and blood tests for other vitamins: Vit D, folate, ferritin.

Self medication is a possibility for once these basics have been done and see how much better you feel. Doctors are very bad at treating thyroid, so you need to do your own research and double check everything they say to you!

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You are not properly optimised TSH should be under 1 and the other two in the top third of the range. I would ask for the Toft statement from Lyn Minnot (admin) to show your GP to get them to increase your levothyroxine until these values are attained. If you still feel bad when optimised or the free T 3 does not increase then I would say ThyroidS is worth a try, from personal experience.

I think SeasideSusie beat me to it with her sound advice!

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Hi Ian

You should title the post "To breath or not". NDT is just so superior to Levo once you work out your dose. PM me if you want help.

regards

James

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Thanks, Jamesl :)

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Thanks to all of you for all of your replies. They have been extremely helpful in trying to get a grip on this problem. As I said in an answer above, I can't get an appointment with my GP until 2nd Feb, but will go armed with plenty of information to try to get some movement on the problem.

Cheers.

Ian

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Good Luck Ian

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Hi, all!

Well, I saw my GP this morning (actually the husband of the one I saw last Nov!) and basically he contradicted himself! I had written a letter prior to the appointment with my private test results and the advice from Dr Tofts as well as my surprise at the B12 injections being stopped. He started by saying he always worked from symptoms rather than raw test results and then went on to tell me that the test results showed there was no problem! He gave me a treatise on the workings of the bell curve and tried to tell me that to be just below the lowest 'normal' reading was, in fact, to be one of the 95% of the population with a 'normal' level’ rather than one of the 5% of the population whose level was NOT within the normal range as I saw it!

He then paused whilst looking at the bloods and said: 'Ah, that's interesting!’. He had noticed that the Mean corpuscular volume (MCV) - the size of my red platelets apparently - was 101.1 fL, which the system recorded as an 'Abnormal result 80 - 101fL'. This reading had been missed by his marital and medical partner when she sent me the text last Nov saying ’No further treatment required’! Anyway, as this he admitted this was caused by - yes, you’ve guessed it! the B12 reading below the normal range that he had earlier said was ‘normal’ - he agreed to restart the B12 injections and re-test in 3 months. He then told me that my thyroid scores were 'perfect'. i.e. bang in the middle of each range! (Note no reference to my symptoms!) So, there's not much chance of getting any increase in the Levo, I think. Anyway, I am keen to see how I feel when I get back on the B12 injections and will boost them with a B12 Boost spray. If I am still getting the same symptoms, I might have to think of NDT but would rather avoid this, if possible.

Anyway, thanks again for all the help and advice.

Ian

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