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Original poster

Hypothyroid Diagnosis - how long will it take to see a difference please?

82 replies

PerAr6ua · 31/08/2011 13:38

Got the diagnosis out of the blue yesterday - doc spent ages talking me through it (I love my doctor, he's utterly lovely). I'd gone in a couple of weeks previously re ongoing period problems, and a couple of tests later I've got a completely unexpected diagnosis for hypothyroid. Apparently my TSH was 3 times higher than it should be, and antibodies 10 times higher.

So, all the stuff I'd been putting down to age, stress and hypermobility could be sorted with one magic pill a day? And I could be losing some weight again?

Who wants to tell me the positives please?! Other than free prescriptions for life Wink. I think it's good news. I mean, it's not often you go to the doctor's for one thing and get given a medical excuse for being fat and lazy... But at the same time it's weird having something I'm going to have to take stuff for for the rest of my life.

And that's another thing. I'm going to have to add ram-raiding a chemist for supplies of levo-wotsit to my zombie plan aren't I... Hmm

OP posts:
Original poster
PerAr6ua · 06/09/2011 22:11

Snowgoose - yep, 10.5, so hopefully tameable. And also hoping I can get depression/stress under control as I'm not feeling terribly resilient atm. Found a dead mouse in my handbag when buying DS's school shoes last week (thanks cats) and completely freaked - had to get DH to come rescue me Blush

Sofabitch - blimey - hope you get it sorted

Bearskin - good luck for next week. Do you have any particular way you set a norm for yourself/and particular thing which makes you think 'hang on, this is more than just a bad week'?

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Bearskinwoolies · 07/09/2011 02:57

PerAr6ua - it's the amount of sleep mainly. When I wake up and feel I could easily sleep for another hour or three, and still need caffeine to get myself going, then there's a problem. Oh and my eyelashes/brows falling out. I lost the lot before diagnosis, and it all grew back - but is falling out again.

Sofabitch · 07/09/2011 07:52

I've been looking in to T3 supplements as an additional. Has anyone ever heard of this

www.stopthethyroidmadness.com/t4-only-meds-dont-work/

I'm getting desperate now lol.

Sofabitch · 07/09/2011 07:53

[http://www.stopthethyroidmadness.com/t4-only-meds-dont-work/] sorry forgot link

Sofabitch · 07/09/2011 07:53

www.stopthethyroidmadness.com/t4-only-meds-dont-work/ ggrrr third time lucky. It's too early. Lol

Bearskinwoolies · 07/09/2011 15:12

Sofa Having read a good bit of it - it appears to be somebody who has a different view of the standard thyroid treatments, and has made a site to shout about it. However - there are strawman arguments in there, along with some major generalisations, and unproven statistics/facts, so I would be wary. The author is using some very emotive language too.

Some of the symptoms listed as being suffered by people taking levothyroxine are laughable tbh - plaque build up?

The main idea behind it appears to be that if you are happy taking t4 only (ie levothyroxine), then you are uninformed, misled by your doctor, and doing damage to your body.

Original poster
PerAr6ua · 09/09/2011 19:39

Oh blimey - that link looks like the sort of thing my colleague bangs on about. When I told him I'd had a diagnosis he asked me what my free T3 was, and told me he had some books for me to read before I took anything from the doctor... I said I hoped they were plot-driven cos concentration's not my strong point at the moment Grin. I think he's given up on me - I'll stick to the magic pills Grin

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Original poster
PerAr6ua · 09/09/2011 19:40

But I think I have a marker now for abnormal - my skin's so dry my elbows are peeling, despite scrubbing and moisturising. Sound familiar anyone?

OP posts:
Bearskinwoolies · 10/09/2011 02:12

Per Yes, that's definitely one, along with your hair becoming drier and coarser.

duchesse · 10/09/2011 02:26

Been on 50mcg/day for 3 years and have rebecome the person I was before. Thank Merck for the little white pills!

duchesse · 10/09/2011 02:34

Although in fairness I feel even better with the natural stuff. My TSH was never all that high- just above 5, but I felt like shit. Always cold, lethargic, sleepy, defeated. Feel very different now.

Shinyshoes1 · 10/09/2011 02:37

BEARSKINWOOLIES Can you ellaberate please

What do u mean. I'm on Thyroxine 125mg daily (smile)

Bearskinwoolies · 10/09/2011 16:26

ShineyShoes1 which bit do you want me to elaborate on? Smile

mountaingirl · 11/09/2011 10:32

sofabitch I take T3 and T4 and have been for quite a few years now as T4 alone just didn't work for me. Drs in the UK do not like prescribing T3. My sister (also hypo and had to fight for about 2 years to get it). I on the other hand in France, have a great GP who took me seriously that I just could not function on T4, sent me to an Endocrinologist who ran a whole load of tests. Nothing else came back as abnormal and she initially told me that I would have to 'live' with the constant exhaustion etc ...but having read Dr Durrant Peatfield's book I went armed with the info about T3 and put forward my argument for taking it. She agreed straight away. I have been taking it ever since. It costs 2?uros a packet and in the Uk it costs £40 (I think). Taking it has helped me cope with life. I still have good days and bad but in general I feel this combination is the best for me 125mgc Thyroxine and 0.025mg Cynomel.

Sofabitch · 11/09/2011 13:57

mountaingirl that's good to know.

trumpton · 11/09/2011 14:14

bump so I can find this thread again. DH is on 125mg and a misery. Sad

Ormirian · 12/09/2011 10:58

Seen GP. Told her all my symptoms and the first thing she suggested was thyroid - got to go for some blood tests on Thursday. I bet it'll be clear and she'll just say 'it's middle age and the menopause'

Ormirian · 12/09/2011 11:12

And she didn't tell me off for coming off my ads cold-turkey - in fact she said that some specialists recommend it. So ha! I feel vindicated.

sincitylover · 12/09/2011 12:53

I take Armour thyroid on a private px - it's imported from the US - and is porcine thyroid T3/t4 combo.

Last time the private gp wanted me to take t3 and cut back on thyroid - I tried it for a month - at first dose was too high and I felt wired/palpitations but cut in half and it was better overall - however I can't afford it - it's about £60 per month.

Mentioned this to my nhs gp who was very sceptical about Armour (on it's own and plus T3) but had to concede that many of her eastern eurorpean patients ask for t4/t3 combo and she can't give it and so she said 'maybe there is something in it' Hmmmm strokes beard!!

I think it's possible that the UK is behind the times in thyroid dx and px.

Drs like Peatfield and Skinner have I think been called before the GMC for their unorthodox views/practice.

The thing is surely there is normal and optimal (which will vary from person to person) and I fail to understand (if I can understand the difference then I don't see why they can't) so why can medication not be px if the symptoms still there/patient is presenting with hypothyroid symptoms.

Going back a few years my TSH was 8 and they said watch and wait - I knew there was something wrong. I think it's now about 0.5 with medication.

duchesse · 12/09/2011 13:27

I feel shit even when my TSH is quite low- anything above 3 and I'm like a dishcloth. In the UK they will not medicate until you are well over 5 and/or have antibodies. I have never had antibodies but have a family history of thyroid problems. It's so frustrating being told by your GP that you are in fact depressed and here, take these nice pills, they will make you feel better. (I didn't, I just suffered for a further three years and went through numerous early miscarriages until I became miraculously pregnant and was put on T4 by by my Obstetrician). FWIW you can import Amour straight from US or Canada- It's about £30 a month with the current exchange rate. Canadian online pharmacies are quite liberal I believe in what they will send out.

camdancer · 12/09/2011 14:01

I like to keep my tsh below 1 otherwise I don't feel right. Luckily I have a doctor who is happy with this. She gets a bit antsy if I'm below the normal range but lets me up the dose if I'm above about 1.5. I'm very lucky.

Apparently in the US they also have 10 and 5mcg tablets so you can be very precise about the dose. Here I have to alternate doses on different days to tweak things.

sincitylover · 12/09/2011 16:03

thanks duchesse - do you know any reputable online pharmacies in US or Canada (I also had Erfa thyroid for a while when there were supply problems with Armour a couple of years back).

I didn't know that you could get it directly.

sincitylover · 12/09/2011 16:04

PS it was the liothyronine (T3) that was prohibitively expensive and I don't think your average UK GP will prescribe it.

Original poster
PerAr6ua · 12/09/2011 19:14

Blimey lots of new posts - I know where to come if the levothyroxin doesn't work Smile

But I have a Stupid Question.

Antibodies just mean that the thyroid's under attack - yes? Doesn't affect the thyroxin? So I don't have to worry about the antibodies once I'm taking the T4?

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Original poster
PerAr6ua · 12/09/2011 19:17

Shock NEWSFLASH Shock

I've just had to take my cardie off because I was too hot!

Could the magic beans be working already? Still shattered though...

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