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(28 Posts)
Jux Mon 22-Nov-10 18:48:46

Just been dx. Apparently my thyroxin level is 11 but the level of whatever it is from my pituitary gland is 14. GP says the pituitary gland is hammering my thyroid to get it to produce thyroxin and even then it cnly get to this level. He's arranged for me to pick up tablets from chemist tomorrow afternoon.

What do I need to know? What do I need to do?

(It's really good news for me as it may make all the difference in my energy and fatigue levels, which everyone's been struggling with and been attributing to ms. Maybe that's why the stuff I take for ms fatigue etc hasn't been working too well!)

Jux Mon 22-Nov-10 21:10:34


mentalcat Mon 22-Nov-10 22:11:17

My DS has hypothyroidism too, hes on daily medication. Hes only a toddler, so I wont be much help in answering what you might need to know, but I do know the medication helps!

It is a family thing (in our family at least) one aunt had her thyroid removed another on medication. Just remember to take the tablets and you should feel a whole lot better!

Hope this helps a bit, and bumps your thread so you get more info!
Good luck

Jux Mon 22-Nov-10 22:22:00

Thanks so much. Your poor little poppet!

I've read that the medication is pretty effective and I am anticipating turning into Superwoman by Wednesday grin

blinks Mon 22-Nov-10 22:25:25

upside is you now get free prescriptions for life (in scotland anyway, not sure if same in england?)...

have been on levithyroxine for 2 months following thyroid cancer and partial thyroidectomy that's left me hypo.

blinks Mon 22-Nov-10 22:25:58

do you know how much your getting put onto?

Bumperlicious Mon 22-Nov-10 22:27:00

I don't think there is much you can do. You may need to have regular blood tests till your dosage is correct.

Just remember that even when you are on an even keel you still may struggle on occasion as your body can't produce the thyroxin you may need for extra bursts of activity.

Bumperlicious Mon 22-Nov-10 22:32:11

Oh yes, don't forget to get a form for free prescriptions. Plus thyroid disorders are covered under the disability discrimination act. Your work have to make reasonable adjustments for you. Hypothyroidism can cause cognitive difficulties like memory and concentration problems.

fatsatsuma Mon 22-Nov-10 22:35:56

Yes, you do get free prescriptions for life in England too (that's for all medication, not just thyroxine).

I was diagnosed two years ago and have generally felt fine ever since (apart from one blip, see below). I have blood tests every few months and my thyroxine dosage has been tweaked up or down accordingly - I think that is quite common.

I recently started to feel very unwell, had yet more blood tests and discovered that my thyroid problem was affecting my iron levels - something to do with not absorbing/storing iron properly. That has now been corrected with iron supplements, but may be something for you to keep an eye on.

AsYouWish Mon 22-Nov-10 22:43:36

Definitely have regular bloodtests - my dosage has gone up and down a lot and I have been diagnosed aneamic(sp?) twice in 6 months. It usually takes me quite a while before I realise that my meds need tweaking which is frustrating 'cos it makes me feel EXHAUSTED and takes about a week to sort.....

Reminds me - need to book a bloodtest. Will do tomorrow smile

doozle Mon 22-Nov-10 22:45:41

Another one here with low iron/low ferritin and hypothyroidism. Fatsatsuma, did it take ages to get your levels back up? Sorry for hijack.

Jbck Mon 22-Nov-10 22:52:19

I didn't realise was covered under DDA Bumperlicious

Sometimes I'm a bit 'scatterbrained' but now I can say it's just part of my thyroid problems instead of a hundred things on my mind at once grin

I think I was always like this so some folk won't believe me.

Jux Tue 23-Nov-10 08:34:34

Yay, there are loads of us! Thank you all so much.

I'm already registered disabled and am considered unfit for work - a lot of that is to do with energy though, so this may sort it out. I'm just so unfeasibly excited about it. At last I might start feeling like a human being again.

I've no idea of the dosage but I know GP is starting me on a low level and will see me again in 6 weeks to see how things are, check my blood again etc.

It coincides with my neurologist, whom I saw on Wed last week, deciding to let me have the pills I've been asking for for years which also boost energy so I may not need them (shame, I was rather looking forward to them!).

So there's no dietary or lifestyle change involved in this. I can't believe I'm so happy about a medical problem!grin

Jux Tue 23-Nov-10 08:39:18

I've just thought of another question.

Bumperlicious, you say that I might sometimes have a blip - if I knew I was going to have a busy day could I take an extra pill to 'cover it'?

Jux Tue 23-Nov-10 08:41:58

As for iron, I'll eat loads of spinach! OK, I know that doesn't really work. Gosh, I'm being kept an eye on by so many different docs, wish at least one of them was worth developing a crush on, but none of them are sad aw shucks.

doozle Tue 23-Nov-10 09:19:10

Jux, yes you shouldn't need to change your diet or anything.

It's a strange feeling when you get diagnosed, isn't it? A mixture of relief and a bit of shock.

No you shouldn't just take an extra pill by yourself when you get a blip. You can't be 100% sure it's your thyroid causing it. And if you take too much thyroxine it can make your thyroid overactive which is not a good thing.

You will start off low and increase over time. I started on 25mg and am now on 125mg.

fatsatsuma Tue 23-Nov-10 12:23:53

doozle - it took a few weeks of progressively getting worse before I saw a doctor, and two sets of blood tests a few weeks' apart when it got even worse, but once I was on the iron (ferrous fumerate, big dosage, but it didn't affect me too much) I started to feel normal again after about 2 months.

Trouble is, the GP said it's quite likely to happen again, so I guess like the thyroid levels it's something we have to monitor regularly.

doozle Tue 23-Nov-10 14:25:23

Thanks Fatsatsuma. You do wonder whether it's the thyroid or the low iron that makes youn feel bad!

I just couldn't tolerate the fumerate stuff in high doses. Now take a smaller dose of sulphate once a day for the long term (17mg of iron a day in a pregnacare tablet).

Jux Tue 23-Nov-10 14:28:44

So I might end up on iron tablets too? Then I'd have to drink organge juice (bleah). Ah well.

I'm still v excited; I'm picking up my prescription in half an hour and then I'll know the dose.

DH has agreed that he expects nothing less than Superwoman tomorrow grin

Jux Tue 23-Nov-10 14:29:21

Or even orange juice which is even worse than organge juice, but easier to get.

doozle Tue 23-Nov-10 14:34:07

If you take floradix or pregnacare tablets, they contain vitamin c as well as iron so you don't need orange juice.

I hope you feel better soon Jux. But if you don't, it may just take a few weeks/month to get your dose right.

Jux Tue 23-Nov-10 15:38:09

Just got them. 50mcg to be taken in the morning before food, and the pharmacist said it could take a couple of weeks before I notice the difference, so I won't be Superwoman tomorrow. I'm still very happy though.

Thanks for helping me everyone!

Jux Tue 23-Nov-10 19:41:09

GP's called me this evening again! I'm deficient in folic acid too so there'll be pills waiting for me at the chemist tomorrow pm! I've started a new thread asking about it.

Good heavens! Is there no end to my debilities! grin

doozle Tue 23-Nov-10 20:55:43

Good luck Jux, at least you're finding out what the problems actually are now! smile

DaftApeth Tue 23-Nov-10 21:22:15

I'm in your club too Jux re: hypothyroidism.

I was diagnosed just before the school summer holidays this year and I too was delighted to be diagnosed grin My GP said she always likes treating this because it makes such a difference to her patient's lives

I went on holiday a few weeks after starting the tablets and even lost weight grin I haven't recently because I have done F all sad

I went straight on to 100mg and had a blood test 3 months later showing my levels were normal.

Since going on the tablets I have noticed that my periods have returned to normal (from being awol), I have more energy and wake up more easily in the mornings, I'm less constipated (sorry tmi), my cholesterol has started to reduce and I do feel more 'with it' generally.

Out of interest, how often do you all have blood tests? Not sure when my next one will be.

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