Finally on Levo but I have made a mistake

[Brad07]

Hi Everyone. GP finally prescribed Levo after years of being subclinical. I sourced my own ndt and ignore blood tests. I decided to go for a blood test a couple of weeks ago and stopped ndt for 5 days. Results showed hypo so they prescribed 100mg Levo. I'm on day 3 and have been sleeping all day I stupidly stopped taking ndt (1.5 tablets a day) I now know I should'nt have stopped ndt so suddenly especially as I came off it for 5 days before my blood test. I feel like I have messed things up and in desperation just took 1 ndt 10 mins ago. Any suggestions on how to taper? I'm in a muddle. Tia

[Jaydee1507 Administrator]

From what you have said its likely you weren;t taking enough NDT if your TSH was over range after only 5 days stopping it.

Anyway, now that you have an official prescription and presumably diagnosis from your GP it would be wise to just stick to Levo for the time being.

100mcgs Levo is a lot to start with although you have had some thyroid hormone recently.

Have you started on 100mcgs Levo?

One would expect sleepyness symptoms and a range of others due to stopping thyroid hormone for a period of time. Your body is going to be confused and symptoms are the result of that.

I would recommend starting with 50mcgs Levo, working up slowly to 100mcgs over a few months.

What supplements are you taking?

What are your most recent vitamin results?

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

[Brad07 in reply to Jaydee1507]

Thank you, I take vitamin D, b complex and magnesium. My vitamin levels seem pretty level. I struggle with ferritin at times, it's hard to eat liver/pate but I do try

[AKatieD]

How much NDT were you taking, how did it make you feel and how long had you been taking it?

[Brad07 in reply to AKatieD]

Just 1.5 tablets a day for a few years. I was doing ok on it

[AKatieD in reply to Brad07]

The hormones in 1.5x 0.5 grain tablets is very different to 1.5x 5 grain tablets so we would need to know the actual dose.

I was wondering how different your new T4 dose would be to what you were taking in NDT, to see how much of a shock to the system the change would be.

[Brad07 in reply to AKatieD]

I'm not sure, I was taking thyroid-s. 60mg. So 1.5 tablets in the morning

[Brad07 in reply to Brad07]

I guess that would be similar to 100mg levothyroxine

[AKatieD in reply to Brad07]

Not necessarily as Thyroid- S has both T4 (levothyroxine) and T3 (triodothyronine). The aim is to produce 38mcg T4 and 9mcg of T3 (but batches can vary somewhat). Thus you have been taking about 57mcg T4 and 13.5 of T3.

If your body can convert T4 to T3 well ( not everyone can) then T3 is said to be very roughly 3x as effective as T4, then this rough approximation works out about at your 100mcg T4.

You may not feel the same though without T3, but see how you get on by switching slowly as the others suggest.

[pennyannie]

Hello Brad :

What do you want to be doing -

staying in the NHS system and taking synthetic T4 and possibly a little T3 - if we find out that T4 only doesn't alleviate your symptoms ?

Were you splitting your NDT or taking a total daily dose of 1 +1/2 grains daily ?

Did you feel well on NDT and whereabouts does your T3 need to sit for you to feel relieved of your symptoms of hypothyroidism.

NDT is the most full spectrum of all the treatment options and contains both T3 and T4 thyroid hormones -

and now you have switched to T4 only - the least bio-available treatment option.

You may find you'll need a small dose of synthetic T3 alongside the T4 - only time will tell:

Most important is that you are being monitored and dosed on your T3 and T4 results and not your TSH :

[Brad07 in reply to pennyannie]

I think I feel comfortable they are now monitoring it. My latest results were

TSH 8.5

T4 4.8 (11-23)

T3 1.8 (3.1-6.8)

I feel a bit better today. I was taking 1.5 grains in the morning. Seemed to completely suppress my tsh and my T3 was always around 5. I felt ok and I'm surprised it changed so quickly within a week! Thanks for you help

[pennyannie in reply to Brad07]

Ok then - this blood test is showing your TSH way over range and crying out for thyroid hormones and we generally feel best when the TSH is kept under 2 and probably under 1 and towards the bottom of the range,

but more importantly you must now be dosed and monitored on your Free T3 and Free T4 readings -

and not a TSH with an occasional T4 reading - as usually happens in primary care.

Your T4 will slowly build up into the range and we generally feel best when the T4 is up in the top quadrant of its range with the T3 tracking just behind at around a 1/4 ratio T3/T4.

So good you have some idea where your T3 needs to be and for a reading of 5 likely means your T4 needs to be up around 20 - which is in the top quadrant of most ranges.

No thyroid hormone replacement works well until ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.

Hopefully you'll feel a bit better day by day as your levels build back into the ranges .