Life without thyroxine?

[Diyena]

What would have happened if I'd never started taking Thyroxine? My original TSH was 5.89. and I can't say I feel much better now I take it. The only thing that made a difference to me was getting my Vit D up from 34 to 79.

[Clutter]

Diyena,

TSH has dropped from 5.89 to 0.02 with FT4 near the top of range on 100mcg. If you hadn't been taking Levothyroxine FT4 would be low and TSH >5.89.

[Diyena in reply to Clutter]

But would I have felt any worse? as so far it seems not. But I don't want to end up like those women in Human Bean's link! So I'll battle on..

[puncturedbicycle in reply to Diyena]

Diyena do you know if you're well medicated though? Is your t3 good or could the levo be backing up (if your t4 is near the top of the range) and not converting? A number of us don't feel all that well on levo but there are so many possible reasons why.

[Diyena in reply to puncturedbicycle]

Mt FT4 today was 23, alas they wouldn't test my FT3 but it was only 3.9 in June. So I have just sent off to get a medicheck test done. My T4 has gone up steadily with each dose raise but my FT3 has gone down on the 2 times it was tested.

[puncturedbicycle in reply to Diyena]

Sounds like you may do better w a little t3 added in, or possibly on t3 only. Made a lot of difference to me. I don't feel great all the time, but I had six months of feeling great and I still feel better now than I did on levo alone.

[Diyena in reply to puncturedbicycle]

But how do i get the T3? I'm not sure my Doctor will be very eager as he wanted me to lower my Levo today from 100 to 75 due to anxiety appearing.

[puncturedbicycle in reply to Diyena]

If you get your t3 results and they're v low and t4 is high (obvious conversion problem I'd say) you can tell your gp and show the tests and see what they say. If your gp won't agree to t3, you have a few choices. You can ask to be referred to an endo (this may help you get t3 but it may be a longwinded waste of time, hard to tell) or you can buy online yourself. Or if you have the resources you can find a private practitioner who'll set you up.

Now that I think about it I've done all of these. And if/when my gp takes my t3 script away I'd do them again.

[Diyena in reply to puncturedbicycle]

I'd rather not source T3 myself, I feel safer getting it through a GP/Endo. ( I know that's probably laughable for a lot of people here )

[puncturedbicycle in reply to Diyena]

No, not laughable. I think everyone would rather get it from a doctor, but when you feel terrible and you've got to the end of your tether and your doctor is telling you it's in your head or whatever, that's what happens.

I think some of us have seen behind the curtain and realise the whole process is kind of random so it changes how you feel about it. My endo only gave me t3 because I'd already got it from a private doctor. Why couldn't he have done that months before when I was having to miss out on all kinds of stuff because I was so ill? I kept jumping through his hoops, waiting eagerly for the next appt and being sent away w the inevitable levo. My poor partner's birthday that year ended up having to work around how breathless and bloated I was and his weekend away can't have been very much fun for him. Multiply that by 365 for the year before I was on t3. All it took was one doctor to say yes, and now I get it through my gp. But I've bought it online because I got sick of the gp holding the cost over my head. I refuse to wait for the day they decide to take it from me.

I'm sure this sounds very earnest and I hope it doesn't sound cross as I don't mean it to (I'm cross at this frustrating situation, not with any fellow sufferers). I know how you feel and I just want to illustrate what the other side of this experience looks like. I don't think a single person here is cavalier about self-treatment.

[humanbean]

I linked to this just yesterday, but I think it is worth another airing.

In times past, when getting treated for hypothyroidism was difficult, people like those described in this article used to turn up in hospitals :

ncbi.nlm.nih.gov/pmc/articl...

The people reported on in the article had probably gone untreated for many years and were dangerously ill. It is (hopefully) unheard of in the UK now, but with the privatisation of the NHS happening under our noses and most people not even noticing, it may happen again in years to come.

[Diyena in reply to humanbean]

Good grief!

[humanbean in reply to Diyena]

Scary isn't it! And yet doctors often seem to think that hypothyroidism is not a serious disease.

[Hidden in reply to humanbean]

Certainly is serious , it can kill you untreated or undertreated. But I know doctor probably just think be grateful it's a slow death. Yea nhs make sure of that.

[katyfow in reply to humanbean]

Thanks humanbean that's a great article! - v.interesting that their doses with ndt were often thrice daily - I've read about multi dosing and currently dose twice daily with Thiroyd but might try splitting three times per day out of interest.

[Jacquid in reply to humanbean]

Thanks humanbean, fascinating and terrifying stuff!

[Jacquid in reply to Jacquid]

And use of the adjective 'scrannel' to describe hypothyroid voice...thin, lean, harsh, unmelodious...sorry, bit of a word nerd, had to look it up, lol.

[claudiasmum in reply to humanbean]

Gosh, how fascinating and scary at the same time! Those poor people! It makes you wonder how many people remain undiagnosed nowadays. I sometimes see elderly women in the street and think they look like the ladies in these pictures and wonder if they are hypo.

[Maud04]

What I noticed was that they all responded to treatment and lost that hypo look very quickly (on what I assume would have been NDT back then and no synthetic T4?)

I have been on Levo for approaching three months and unfortunately still have the hypo look

Seems we have not really progressed at all in all these years!

Kind regards

Maud04

[Angel_of_the_North in reply to Maud04]

Consider that some of them were getting 6-8 grains of NDT a day (2 grains x 3 or 4) and you'll see that current dosing is much much lower.

[helvella Administrator in reply to Angel_of_the_North]

Not so fast!

We nowadays hear only of USA-based desiccated thyroid (even if it is from Thailand or Canada it is all made to be like USA products). The report is in the British Medical Journal and is based in Middlesex so almost certainly used UK-sourced desiccated thyroid (Thyroid BP) which was about half as potent (i.e. contained about half as much thyroid hormone per grain).

Added to that, we have very much better laboratory analysis techniques so the actual potency can be controlled much more accurately. (Analysis used to be based on total iodine content.) So a grain of, say, Nature-Throid or Armour today could be more than twice as potent as a grain of Thyroid BP from the 1950s.

[Angel_of_the_North in reply to helvella]

Good point.

[loueldhen]

I started thyroxine when TSH was 5.94 at a routine blood test. Never did anything to make me feel better. Took me seven years to realise it was the reason for my failing health. Poisoned me. It doesn't agree with everyone. I'm on T3 now. Just monitor yourself. If it doesn't make you feel better I would not take it but keep monitoring your TSH on nothing and if it shoots up go for T3.