Goldie Locks and the Three Bears

[Oneinthehand]

Goldie Locks, greedy little thing, gets to try three of bowls of porridge, three chairs and three beds. In trying each of these things, GL finds that which is “just right” for her.

What about us thyroid people though? Some in the medical profession would have us believe that levothyroxine (T4) is the perfect little antidote to our problems. Just take that pill and you’ll be fine, come back in 6-8 weeks for a re-test or a year if your optimum dose has been determined. Works for some but definitely not all.

Not feeling better? Can’t be your thyroid, must be something else. Ummmm, must be stress or, I know! Depression.

I’ve had one GP (a hypo herself) tell me she couldn’t tell the difference between generic brands. Well whoop-de-do, I certainly can and my fluctuating results seems to reflect this but then I’m only the patient. Grrrrr!!! Needless to say, I avoid her like the plague these days.

So what of our other options? Natural desiccated thyroid extract. Works great for some but even my endo, who I consider to be much more open minded than most, sucks his teeth at the mention of Armour. What really sucks is that doctors will let their patients suffer rather than allow a trial.

Liothyronine (T3), only Endos (with a few shining star GPs) seem to prescribe this. However, only after months and months of struggling (in my case, a full year) does this seem to be trialled. You know that moment when the electricity is harvested to bring Frankenstein to life? That's what T3 does for me, (though he's prettier).

So it seems that unlike Goldie Locks, we’re a fair way off from finding treatment that is “just right” for us as individuals.

Your turn: What medication (if any) are you on? Would you like to try alternatives? What responses have you had from the medical profession about alternatives?

[Hidden]

Hi,

I have just been prescribed my first lot of meds - 25mcg of Levothyroxine which I am going to start taking after a week of taking some adrenal supplement. When I asked the GP if (following a bad time on HRT which I stopped after 6 wks as I think I reacted to the sodium/salts as I blew up) - I asked if there was something else other than Levothyroxine (meaning, because I know but staying quiet this time) purified thyroxine or NDT. His response was "you have to take these as it is the same as everyone else does in this country"!!

I will give it a try and I will see if I can convert it successfully to T3 and find relief of symptoms - but I am relieved that there are options for buying privately as I suspect that being a singly handed GP practice which dispenses from the surgery - I might as well ask for the winning lottery numbers as ask for an NDT or T3 drug!

S

[RedApple]

I have yet to regain full health on thyroid medication of any variety (been at it well over 4 years now). But through self education and self help via the internet, I manage a better quality of life than I would if left entirely in the hands of the medics. My local PCT have pulled the plug on desiccated thyroid, so my GP has the perfect excuse not to prescribe it. And T3 seems to be a dirty word. So it's T4 only, with apparently no way for the GP to specify a particular brand. And definitely don't have the audacity to suggest to the pharmacist that all little white tablets are not equal!

[Chippysue]

My MP came to see me as I was too ill to attend her clinic, she asked the Health Secretary why I was not receiving the care necessary to get me better and I have a copy of the reply. Doctors can prescribe NDT as they take responsibility. Indeed I know of several people who are prescribed NDT by their GP's on the NHS.

We all need to contact our MP's!

It seems the same with T3 too. My GP prescribed it to me a couple of years ago after Dr Skinner's advice but I had seen an Endo who is high up in the thyroid world who told me that she would not prescribe T3 and on my way out touched my arm and said "if you were my sister I wouldn't prescribe T3".

It is the wrong attitude to have but it seems ironic that my medication costs the NHS a lot of money, they should have helped me earlier on and perhaps I would have been ok on normal levo!

There is definitely evidence that taking different branks of levo makes a difference, just need to find it

[lizp]

have been on levothyroxine for 30 plus years - felt wonderful for first week and then what felt like a black curtain closed down over me - endo upped dose till 225 mcg, some symptoms disappeared, but others (memory loss, slow thinking, difficulty in choosing words, irritability)remained - went back after ten years and was put on HRT which did nothing in particular. About six years ago asked GP about natural thyroxine - said she'd never heard of it. Would certainly like to know of alternatives and where to get them - no use asking GP

[Oneinthehand]

Lizp,

"About six years ago asked GP about natural thyroxine - said she'd never heard of it. Would certainly like to know of alternatives and where to get them - no use asking GP"

Armour is dessicated thyroid taken from pigs. It contains all the thyroid hormones rather than just one, T4, which levothyroxine replaces.

T3, which I take alongside T4, is a more quick acting thyroid hormone than T4. There is a theory that some people do not efficiently convert T4 to the other thyroid hormones which is why symptoms persist.

In your situation I can think of some options that might be worth trying if you haven't already.

-Can you see another GP, even at the same practice? You may find one who can help you further.

-Any chance of a referral to an Endo?

-You may get further information if you post a question on this site.

[lizp]

to oneinthehand,

thanks for reply. No use trying GP practice - head of practice devoted to the blood test results which say I need less and less thyroxine. As far as I know, the endo is same man who put me on the thyroxine in the first place and who put me on HRT when I complained that thyroxine didn't seem to be working. Can only wonder if possible to see another endo privately, but here that would mean seeing the same man. Is it possible to consult anyone privately without having to be referred by the local practice ? (Scotland)

[Oneinthehand]

Lipz,

"Is it possible to consult anyone privately without having to be referred by the local practice "

I'm not sure how it works in Scotland. I hear there are some Endos who do not necessarily need a referal. Again, I suggest you post a question as there has to be someone who knows more than I do. I think clicking "Helpvine" in the header will get you there.

In England people can go to a Private GP for investigation and then referal onto the NHS, though that might not be so in Scotland. I'm so sorry you're lumped with this situation.

[RedApple]

lizp, I am not familiar with the way the medical system works in Scotland, so can't offer an answer to your question.

As Oneinthehand suggests, if you click on the Helpvine icon at the top of this page, you can ask your question there, where more people will see it and maybe someone will know the answer.