New to NDT what should I expect?

[magsyh]

Hi at last I have received a private prescription for NDT but im worried about what I should expect. My t3 has been scraping the bottom of the barrel for sometime but received no help from my gp. Latest level ft3 was only 3. (3.1to 6.8) I seem to be running on adrenaline. So picking up my prescription today. 1/4 grain morning and afternoon. Im a bit worried as to how my body will react. Any advice please? Biggest worry if my heart rate goes crazy what do i do? I know my gp wont be happy they tell me nothing wrong with my thyroid last blood test they did tsh was 2.7 at 2pm (0.03-5.4) and t4 13.1 (9 -20) many thanks

[silverfox7]

I followed the Stop The Thyroid Madness book re starting NDT. The doctor who gave you the private prescription should have given you advice but looking at your results you look to be more undermedicated than needing T3. FT 4 shows room for improvement and that should bring your TSH down. If you haven't already tried this then its a lot easier and cheaper than NDT and it might work very well for you. But then your next testing must include FT3. It then when the rangesare higher and FT3 is very low by comparison then yes you may well have a conversion issue but you also need your Vit D, B12, folate and ferritin to be optimal, not just in range so that your thyroid works as best as it can. There is a possibility that without the groundwork you body may not let you raise NDT till other things are in place.

[magsyh in reply to silverfox7]

I am new to this never been on meds have been hypo for years thats why im worried. T3 now very low and i feel terrible. My vitamins etc are pretty good because i have been working on them as gp always refused levo. I have a private doc now who was willing to start me on NDT.

[silverfox7 in reply to magsyh]

Hope it goes well for you.

[SlowDragon Administrator]

You were under medicated on Levothyroxine, so hardly surprising FT3 was too low

On Levothyroxine dose should be increased in 25mcg steps until TSH is around one and FT4 towards top of range.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Is this how you did the last test?

I can see test was done late I now day, so TSH would have been higher if tested in morning.

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine and FT4 at least around 17

(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...

How much Levothyroxine were you on ?

What about vitamin D, folate, ferritin and B12 levels?

Have they been tested?

[magsyh in reply to SlowDragon]

I havent been on levothyroxine gp always refused. I saw a private doc they told me to take it and my gp went mad so i have been off it since march this year. Found another private doc who is starting me on NDT slowly because my adrenals never happy my heart rate races at slightest thing so thats my biggest fear.

[MaisieGray]

A quarter of a grain contains only 9.5 mcg T4 and 2.75 mcg T3, there's no need to worry! To put it in perspective, people generally take anywhere between 2 - 5 grains as a maintenance dose; and on synthetic T4, start on 50 - 100 mcg. The fact of worrying/being anxious about it is likely to create the very reaction you are fearing - your "heart going crazy".

[Bible1000]

Hi had T3/T4 natural thyroid 10 days ago first few days felt sick and wrong but my adrenals and my tsh and my T3 were really low. Feeling much better not right but better than I was on thyroxin. I am feeling confident. I have terminal nets cancer so was worried about natural on the cancer injection. But I'm doing OK and I have got my sense of humour back first time in years. All the best d c

[magsyh in reply to Bible1000]

So sorry to hear this, what is nets cancer? Never give up xxxx

[helvella Administrator Thyroid UK in reply to magsyh]

Neuroendocrine tumours (NETs)

macmillan.org.uk/informatio...

Loss of sense of humour is relatively rarely mentioned as a symptom of hypothyroidism. Glad that something has improved.

[magsyh in reply to helvella]

Thank you

[Bible1000 in reply to magsyh]

Hi its cancer that secretes hormones not nice sends thyroid mad. It's terminal but a slow torture as you don't no how long you have and it has now spread from bowel to liver to bones and lymph system. Plays with your head. Its like pmt but sa million times worse. Had ,3 major ops can't have anymore so its watch and wait. Not much fun. I do a lot of praying. Love d x

[magsyh in reply to Bible1000]

Sounds horrific! Are you prepared to try anything? Cannibis oil? Frankincense oil, rose oil, sandlewood oil to the soles of your feet alternately? I'd try anything, dont give up! Love to you xxxx

[Bible1000 in reply to magsyh]

Hi thank you. I've had it for 6 years now. On plant based diet no sugar or carbs no gluten no bread or aditives. I do use cbd oil have done for 4 years. I also rub frankincense into the soles of my feet and I take a variety of suppliments. Its hard when you feel so ill to no what makes you I'll, Is it the monthly injection which effects the thyroid who knows I do keep trying and try to keep going I spend 20 hours a day in bed due to chronic fatigue and I used to walk 4 miles a day didn't smoke or drink. Love d x