Going to self medicate, but how please? - Thyroid UK

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Going to self medicate, but how please?

potnoodle profile image
12 Replies

Hi, Would anyone please be kind enough to pm me with any info you can spare on self medicating with NDT? I I can't go on like this, feel like death with TSH of 3.08 but perfectly 'normal' and would have 'bone problems' if my GP gave me any thyroxine which would be 'unethical'.

Much more ethical to leave me with no quality of life and tell me I'm normal and should take antidepressants for my health anxiety.

I did print my test results (including private FULL thyroid screen not NHS carp TSH alone) and received lots of helpful info but GPs don't want to help me so I'm on my own with this.

Thanks to this site I now know I can buy my own meds which sounds brilliant but I am unsure the easiest and best way to start.

Rant over, thanks in advance. :0)

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potnoodle
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shaws profile image
shawsAdministrator

I will respond

CONGRATULATIONS on taking control of your health

potnoodle profile image
potnoodle in reply to

Thank you!

stenstorp profile image
stenstorp

I think you should monitor any development. That includes symptoms, basal temp and resting pulse. And start slowly at 1/2 grain for two weeks and maybe leave more time than that. This is how I did it anyway. Have look at stopthethyroidmadness.com/, lots of good advice there.

potnoodle profile image
potnoodle

Thank you, that sounds sensible, I would start slowly as I would find it a bit nerve racking to being with!

Jackie profile image
Jackie

Hi Start with a low dose, half then have a blood test, TSH, T4 and Free T3 before any rise, after a few weeks.You can pay through Blue Horizon, do not use a hospital as that is expensive. Quote TUK 10 for a discount.

Best wishes,

Jackie

Monix profile image
Monix

When starting on NDT, you should start with half a grain and work your way up half a grain at a time every two weeks.

Glynisrose profile image
Glynisrose

Mainly because your doctor is PAID to prescribe anti - depressants!!

potnoodle profile image
potnoodle

And they're cheap and would shut me up!

cc120 profile image
cc120

stopthethyroidmadness.com/n...

How do I move from taking T4-only to NDT?

Many patients do their T4 one day, then stop and start on desiccated thyroid the next with a safe beginning dose, usually one grain (see below), with no problems whatsoever. Some doctors guide their patients to lower T4, such as by half, start on desiccated thyroid, then continue lowering the T4 as they raise the NDT. But the former works well. Work with your doctor.

How do patients dose with natural desiccated thyroid?

Thyroid patients and their doctors have found it wise to start on a smaller dose of desiccated thyroid than they will ultimately need, such as 1 grain (60/65 mg). Why? Because the body may need to adjust to getting direct T3 again, and there may be other issues which can reveal themselves, such as sluggish adrenals or low iron levels. Those who start on natural desiccated thyroid have discovered that it can be wise to RAISE by 1/2 grain every two weeks or less to prevent hypothyroid symptoms from returning due to suppression of the internal feedback loop in your body, which can happen if you stay on a low dose too long before raising. Most patients start to slow those raises down in the 2-3-grain area to give the T4 time to build (which can take 4-6 weeks) and show its conversion results..then inch their way up if needed. Some patients end up in the 3-5 grain area when optimal, some on a lot less, and some on more. It’s individual. (Janie Bowthorpe is on 3 1/2 grains, for example)

Nickinoo1 profile image
Nickinoo1

I absolutely empathise potnoodle. I am in exactly the same boat. I can have CFS, depression, FB, perimenopausal or somatoform disorder but my bloods are all in range therefore nothing wrong with me at all. My TSH in past ten years has been up at 5.4 to 2.4 and anywhere in between - and probably more but I am per my Dr fine and the only referral I will get is to a rehabilitation Dr.

Waiting for my NDT to arrive it's been two weeks now and hoping just held up in Xmas post. Busy topping up vitamins in the meantime and gone gluten free.

I wish you luck with your NDT trial its daunting I think but also liberating not to waiting on so called medical professionals to assist.

Anyway happy Xmas one and all.

potnoodle profile image
potnoodle

Thank you nickinoo, I wish you all the best with your NDT trial too.

Mine only took a week to arrive and I've noticed improvements after less than 4 weeks of low gradually increased doses. I'm following the advice given here which included changing my cookware and supplimenting vitamins and minerals.

It makes me angry to think of the years of wasted ill health attending rubbish pain management courses, physio etc.

Here's to a positive new year for us all!

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