Struggling and needing advice on NDT

[HattieLouise22]

Hi all,

I'm pretty new here - I was diagnosed as hypothyroid about 8 months ago after a private blood test showed my T4 level raised to 11.5, low Vitamin D & B12. I had my bloods done because I was so exhausted and so changed from my usual energetic self I thought I had cancer. My GP initially dismissed the test result as 'impossible' but did do a re-test, which showed T4 at 12.5. He prescribed 25mcg Levothyroxine (low dose presumably since I am in my late 50s) and re-tested at 8 weeks. T4 was 4.5 and he declared me cured, with my next NHS blood test booked for November (9 months from now).

Though initially I felt better on the Levo, it didn't last, and I certainly did not feel cured - my resting heart rate was still in the low 50s, body temperature 2 degrees below normal, still no eyebrows. In the interests of research I increased my dose of Levo by 25mcg but just got really bad palpitations.

So after doing a lot of reading (including on here) I ordered Thiroyd from Thailand and began taking that, slowly increasing from 1 tablet to 1.5.

I felt pretty good for a while on 1.5 tablets but then the tiredness began to creep back.

I had seen some benefits - I have a few new eyebrow hairs at least - but certainly I didn't feel I had reached the lightbulb-moment sweet spot I hear others describe. So I increased my dose to 2 tablets. After a few days I began to feel quite ill - racing heart, hypoglycaemia, dizziness - so assumed I had taken too much and gone hyper, and took no tablets at all for two days until the symptoms subsided. Two nights ago I took one tablet and last night 1.5.

But I feel so unwell again! Depressed and super-tired, everything aches. And while I had a few days of normal heart rate on 2 tablets (high 60s/low 70s) now I'm back down in the mid 50s and my temperature is back where it was. Most worryingly my heartbeat feels oddly irregular.

How is this possible? Was I really hyper? I feel I'm right back at the beginning and can't understand why I'm not getting the kind of results with the NDT others seem to enjoy.

I'm taking regular supplements - Vitamins C, D, B12, Zinc, Magnesium and an adrenal support supplement.

I feel like I'm doing everything right but it's not working for me - any advice, please?

[fibrolinda]

Patience. 😊 Seriously though it's a marathon not a sprint. You must increase slowly and my own experience by 1/4 tablet at a time.

Have you any blood tests to show us? On Levo or NDT?

Feeling better at first then worse usually means you need a dose increase, and to be honest can mean you need a reduction. It's a narrow line... Sigh... Not easy.

My advice try 1 1/4 stay on for 6 weeks do blood tests and then it will give some indication of where you are.

I went from mid range free t3 to over range free t3 with just a 1/4 increase... It's why I say low and slow. And, Patience. ((hugs))

[Hidden]

Please post any recent labs to make it easier to comment.

1.5 grains is a starting dose, not a maintenance dose for most patients with full-blown hypothyroidism. Most seem to need 3-5 grains for complete symptom relief, some even more. So it's likely that you're not on enough Thiroyd, and that would explain why you felt better at first but then started going downhill.

A good idea is to add 1/2 grain every 4-6 weeks until complete symptom relief.

When on NDT, or any drug containing T3, it's common to have a suppressed TSH and slightly lower FT4 levels than on levo only, so you really need to go by symptoms.

[MaisieGray]

When you wrote that your "T4 raised to 11.5" then "T4 at 12.5" and "T4 was 4.5", did you actual mean that it was your TSH that was elevated and then fell after treatment with Levothyroxine?

[HattieLouise22 in reply to MaisieGray]

Yes. At my 8 week blood test TSH was down to 4.5 so the GP said I was fixed...

[MaisieGray in reply to HattieLouise22]

Okay. It's important to be accurate when reporting test results, especially as TSH is a hormone produced by the pituitary gland with a specific function, and T3 & T4 are thyroid hormones. In any case, you are not "fixed" simply because the levothyroxine has done its job of temporarily raising thyroid hormone levels and lowering TSH - that's like saying if you put glasses on and can see better whilst wearing them, that your eyesight is fixed. Your Dr is one to be avoid - can you see another in the practise?

[SeasideSusie Remembering]

He prescribed 25mcg Levothyroxine (low dose presumably since I am in my late 50s) and re-tested at 8 weeks. T4 was 4.5 and he declared me cured,

Wow! Cured! I wonder why then, after 44 years of taking Levo, I'm not cured

Does your GP go "hee haw" when he opens his mouth? He certainly sounds like a donkey!

Seriously, I would find a new GP, this one hasn't got a clue. You can't "cure" an underactive thyroid, it's managed. It's underactive because your body can't produce enough of the life giving thyroid hormone, so it's replaced with synthetic thyroid hormone, and that has to continue, it doesn't work like an aspirin for a headache. Your GP needs to go back to med school or at least read up on hypothyroidism.

[SlowDragon Administrator]

25mcg Levothyroxine was only half the standard starter dose of Levothyroxine

You likely just needed to increase Levothyroxine dose slowly in 25mcg steps until TSH is around one and FT4 in top third of range

Guidelines on doses

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

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

* This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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)

If/when also on T3, Or NDT make sure to take last dose 8-12 hours prior to test

Is this how you do your tests?

Absolutely essential to test FT3 on NDT

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[HattieLouise22]

Thanks all for your comments. I've spent time this morning going through my original blood tests (pre-GP first visit) and found something which may give a clue as to why I'm not feeling better - enlarged red blood cells, low B12 and super-low folic acid. So I'm thinking maybe pernicious anemia? I have been supplementing B12 but I think not nearly enough. Anemia would explain an awful lot... I'm going to get everything retested (but this gets expensive...)

[SeasideSusie Remembering in reply to HattieLouise22]

Come off your B12 if you think you may have PA or B12 deficiency and want to test. To get a baseline you need to be off for 4-5 months. You could try testing sooner, but be prepared for skewed results.

[SilverAvocado]

HattieLouise22, If you're in the position of not knowing whether you're coming or going with NDT dose, go for the most cautious dosing strategy. This is to stick with a dose for 6 weeks, and then get a blood test.

When self medicating it's pretty essential to get used to mail order finger prick blood tests from somewhere like Medichecks or BlueHorizon.

What I would suggest is to go back to the dose where you felt pretty sure you were undermedicated, but fairly stable on it. Stick with that for the full 6 weeks, take your temperature and pulse on a regular basis and record them along with any symptom notes. I do mine morning and night, but there are better regimes out there.

Then get the blood test, and that will give you some reassurance of how far you are from your optimal dose and which direction to go in. Then adjust your dose by a quarter grain (some do a half, but that's quite bold and for when you're pretty confident in what you're doing), and wait 6 weeks again and have a new test. By that time you might feel you've got your bearings and might try raising a little more quickly. Personally I have done 6 weeks and test the whole way through, and I've been raising my dose for several years!

Everything with thyroid needs to be slow and steady. You'll find your state on a certain dose continues to develop for the whole 6 weeks, it takes a long time for the body to get really stable with it.

At the same time, look into the vitamins and get those treated. Having optimal vitamins will help the thyroid hormones to work.

[HattieLouise22 in reply to SilverAvocado]

Thanks Silver avocado, that is very sound advice. I'm impatient to be well (aren't we all?) so maybe I've gone too fast. But I'm getting the folate/B12 thing checked too on case I need to be fighting on two fronts...

[SilverAvocado in reply to HattieLouise22]

One of the most difficult things with thyroid treatment is having to wait around and find out how you're doing

Good luck with the vitamins, too. In a way it's good news to have bad vitamin results, as it means you've got something you know about to tackle, and you're sure to have an improvement in symptoms as you raise your levels.