Advice re next dosing step for NDT v Levothyroxine

[Buttercupsareyellow]

Hi everyone

I have written before about starting T3. I am now under a private endocrinologist who has been supporting me to trial NDT. I feel I could do with an increase in something. Story so far:

June 21. Dose 150mg Eltroxin (before Change of meds)

TSH 0.06 (0.27-4.2)

T4 21.4 (12-22) 94%

T3 4.6 (3.1-6.8) 40.5%

End August 21 Dose 100 Eltroxin, 30 ERFA (half grain)

TSH 0.23 (0.27-4.2)

T4 16.8 (12-22) 48%

T3 4.0 (3.1-6.8) 24%

November 21 Dose 50 Eltroxin, 60 ERFA (1 grain)

TSH 0.4 (0.27-4.2)

T4 13.7 (12-22) 17%

T3 4.2 (3.1-6.8) 29.7%

Clearly NDT is better for giving a more realistic reading on my results, especially T4 I was on 175/200 combo and had been ‘persuaded’ to reduce to 150 due to TSH often being around 0.03 to 0.06 and T4 often over 22, although T3 never went above 5.3

In theory I am ‘on the same dose’ but my T4 has plummeted and TSH, whilst just in range is not where even this endocrinologist wants it (he’s aiming for 1.0)

I feel I would like to nudge up to the equivalent of 175 dose Thoughts on whether it would be better to go:

150 equivalent of ERFA (90 so one and half grains) plus 25 levothyroxine

This does increase my cost hugely from £80 every 100 days to £140 every 100 days

Or

Bump up eltroxin to 75 and keep the 100 equivalent 60 ERFA (one grain) so more a half and half approach

I am wavering as T3 hasn’t really gone up, BUT I do feel less achy etc however weight still rubbish and brain fog and tired suggesting increased dose needed

T4 is SO low….

Not sure how to persuade endo to increase dose with 0.4 TSH……

Thoughts would be appreciated

[pennyannie]

Hello Buttercupsareyellow :

I think you need to concentrate on building up your NDT at the expense of T4 synthetic or revert to synthetic T4 and add in some synthetic T3 - Liothyronine making a T3/T4 :

With NDT you track the increase in T3 levels and currently your T3 has gone down:

I switched from 125 T4 to NDT overnight - and found my right dose by slowly increasing my NDT by 1/4 grain increments weekly.

After finding my right dose, through symptom relief, I took this 1 + 1/2 grains daily for 6 weeks allowing the NDT to bed in, and then took a blood test>

On NDT my first result showed my TSH was at 0.01 but that was normal even on T4 and my T3 and T4 had literally swopped places in that now on NDT my T3 was 110% and my T4 25 % through the ranges.

I was in no way over medicated and I am now 4 years into the same regime, but do also supplement to keep my ferritin, folate, B12 and vitamin D at optimal levels.

My blood pressure and pulse remained constant throughout the experiment and my temperature rose slowly from 35.4 to 36.6 :

No thyroid hormone works well until your vitamins and minerals are up and maintained at optimum levels and conversion of T4 into T3 can also be compromised by any physiological stress ( emotional or physical ) , inflammation, dieting, depression and ageing.

The TSH is of little, if any importance, once on any form of thyroid hormone replacement.

It was initially introduced as a diagnostic tool to help identify a patient who might be suffering with symptoms of hypothyroidism and was never intended to be used once the patient was on any form of thyroid replacement.

Since you haven't a thyroid your HPT axis, on which the TSH test is based, is null and void as your Hypothalamus - Pituitary - Thyroid feedback loop is broken as your " T " for thyroid isn't there any longer.

P.S. As you may remember I'm with Graves and had RAI thyroid ablation in 2005 and now manage lingering Graves, thyroid eye disease - caused by the RAI - and hypothyroidism.

[Buttercupsareyellow in reply to pennyannie]

That is helpful. I should have mentioned I am also considering HRT at the moment and thought I had read somewhere that can affect dosing requirements

[shaws]

Before blood tests were invented those who had a dysfunctional thyroid gland, we were diagnosed upon our clinical symptoms alone

We were given NDTs, and dose was slowly increased until the patients' symptoms resolved and they felt much better. The following are some links to Dr. John Lowe (deceased through an accident) was an excerpt from a scientist/researcher/doctor who was also an Adviser to TUK before his accidental demise.

January 30, 2002

Question: I’m hypothyroid and take Armour Thyroid twice a day. My question is about the right time to take it in relation to when I eat. Should I take it two, three, or four hours after I eat? I've read all those times in different places. Thank you very much for your time—and your great website!

Dr. Lowe: As a rule, our patients take thyroid hormone only once per day. An advantage of this one-per-day schedule is that it’s easier to find a window for good intestinal absorption—when the stomach or small intestine doesn’t contain food.

Most of our patients wait at least one hour after taking thyroid hormone before they eat. Or they wait at least two hours after eating before they take thyroid hormone. The two hour wait is a rough estimate of the time it takes for food to pass through the stomach and small intestine. It’s worth noting, however, that several factors can increase the time a patient should wait before taking thyroid hormone.

web.archive.org/web/2010103...

You can cut your tablets into 4 and slowly add to your dose over several weeks taking note of your clinical symptoms and when you feel well and have no symptoms that should be your optimal dose. If palpitations start, reduce to previous dose.

[shaws]

When we take or add NDT, we should concentrate upon our clinical symptoms only.

When NDT was first introduced in 1892 (before that we just died) and it was the only replacement that was available and lives were saved from then on for those who had hypo..

Very small increases were added (and it is easy to 1/4 tablet) every number of weeks until we felt well and symptom-free.

I am also not medically qualified but had to diagnose myself after GP phoned to inform me that all my blood tests were fine. I cried because I was very unwell. GP had no idea at all if a patient's TSH was 100 that they were hypothyroid!

[Buttercupsareyellow in reply to shaws]

In some respects we are lucky we now have options to keep us alive, we just need the medics to work on the quality of life bit…..

[greygoose]

My advice would be to stop paying your hard-earned money to a rubbish endo that doesn't know you can't have a TSH of 1 when taking a decent dose of T3. If you stopped paying him, you could afford the increase in NDT that you so badly need, and to hell with the TSH. You don't need that.

[Buttercupsareyellow in reply to greygoose]

Unfortunately he is the only way I can source the NDT. My NHS endo has refused. He does seem quite pleasant so I’m hoping he might listen, although appointments are always very short……

[shaws in reply to Buttercupsareyellow]

If you have someone able to prescribe for you that's good. The aim is a TSH of 1 or lower (some professionals seem to think if our TSH goes low that we've become hyPERyhyroid but that's not the case and the aim is a TSH of 1 or lower with both FT3 and FT4 in the upper part of the ranges. The 'frees' are rarely tested.