Self medicating: A reliable source of Levothyroxine, anyone?

[MMaud]

So, playmates, I have recovered from the frustration of learning that there is not to be an automatic increase to my recently diagnosed massive 25mcgr of Levothyroxine, based on (I assume) my TSH dipping from 5.6 to 4.5.

OK, my thyroid seemed to have a bit of a bounding puppy party in the early days, only to slither back to near starting level of symptoms. I mean, is it really normal to be sitting cuddling a hot water bottle today? No? I thought not either.

Anyway, whinge over.

I do have a tel-con booked with my GP for the 2nd May, but assuming she sticks with where we are now, I have decided I will self-medicate. I always swore I wouldn’t self-medicate where a hormone is concerned, but the early days, bounding puppy party helped me get over that.

So, bottom line is, could anyone point me in the right direction for suppliers of TSH?

I have a bit of a plan, in terms of how I will create my base point, titrate and monitor, and if necessary deal with the need for T3, should it arise and I can source it from a reliable source.

Thank you so much everyone. You are helping shorten the learning curve by miles.

[MMaud]

My GP is ordinarily very good, and I have all of the other tests done, resulting in a loading dose D3 as my Vit D had dropped from a natural (never supplemented) 80 to 21. I have added K2 to aid uptake, but all the others were fine.

She clearly doesn't know too much about hypothyroidism, but then again, at towards the beginning of this cold journey she referred me to an Endo, who was disinterested, so she immediately offered a named referral to someone of my choice, which I took, on the recommendation of a couple of doctor friends of mine. He was very interested, but content my thyroid wasn't in play, when it tested at 4. Ooops.

To be honest, when I read of others' experiences on here, and how good, and pretty candid my relationship is with my GP, I will stick with her for now. I will very obviously be asking her to oblige with an increase, and if she feels unable to do that I will tell her, straightforwardly, what I intend to to, and see what she then says.

For now, I feel I would rather face the learning curve required (I'm highly intelligent and able to read scientific papers etc., ), so right now, I feel I trust myself better to do the best for myself than play a lottery of another GP who also knows nothing about hypothyroidism and with whom I perhaps can't build the otherwise excellent, and candid relationship. As I'm sure we're all very aware, many professionals don't appreciate patients with minds of their own, and I definitely have a mind of my own.

Of course, I'll have to bear the consequences if I totally much it all up, but I accept that accountability.

[helvella Administrator Thyroid UK in reply to MMaud]

I don't know if you have seen the comment by diogenes on a recent thread about 25 microgram dose of levothyroxine:

healthunlocked.com/thyroidu...

[greygoose]

Just a small point, in case you get into an argument on the subject, which could happen, you don't take vit K2 with D3 to 'aid uptake' of the D3. You take it because taking D3 increases absorption of calcium from food, and K2 makes sure it goes into the bones and teeth, rather than building up in the soft tissue. I say that because there have been arguments on that point, on this forum, in the past.

[MMaud in reply to greygoose]

Thanks Greygoose. She already knows I added K2 to the prescribed D3, and was quite happy with that.

I doubt there will be arguments because when it all comes down to it, she can't control how I live my life on a day to day basis. She is welcome to have her say, and discuss her case against the increase, and I will listen. If I expect to be listened too, I should do her the courtesy of the same, but I wouldn't lie about my intentions, or on an on-going basis what I might be doing.

[greygoose in reply to MMaud]

I wasn't talking about your doctor! lol

[MMaud in reply to greygoose]

Ah, thanks. I'm a the beginning of my learning curve, so open to any necessary corrections.

Every day's a school day it seems. :o)

[greygoose in reply to MMaud]

Oh, it certainly is!

[MMaud]

Thank you. I've had a quick look at Diogenes' post history. That reading is probably best not started at almost 11pm, or I won't get any sleep!

Thanks for taking the time to post.

[SlowDragon Administrator]

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(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...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also essential to have Thyroid antibodies tested, if not been done, plus FT3 and FT4

Suggest you get full private testing if these are not done via NHS

Plus vitamin B12, folate, ferritin and retesting vitamin D

[Surfdancer]

Hello MMaud,

I recommend Tirosint if you can get it where you live. From your writing, you seem to be from the UK, so not sure it's available there. Tirosint is levothyroxine (T4) but without the fillers and binders used in Levo. As a result, it comes in a clear, amber gel capsule. It's absorbed much better with no other ingredients to slow down absorption. I live in Southern California, USA and get it through a local pharmacy shipped to my door. They are called Quick Care Pharmacy. They are extremely professional and like the name, they are very quick to respond and ship out meds. Tirosint is expensive though, but sometimes there are coupons you can use to help reduce cost. Some insurances may cover Tirosint.

That said, I think self-medicating is dangerous. It's impossible to be objective about one's own health. Brilliant Dr. Wiliam Osler (founded Johns Hopkins Hospital), wrote,

"A physician who treats himself has a fool for a patient".