Thyroid meds?

[June2008]

Just wondered if anyone had any advice on how long it takes to get meds at the right level? I had a partial thyroidectomy in Dec '11 (due to a huge growth on my thyroid - approx the size of a tennis ball - that actually I and no one else had noticed - was picked up by my doc at a routine appt) all seemed to be fine initially during the months following.

However as '12 progressed I started to get more symptoms and pretty much knew what was up. I eventually went for a blood test in Jan of this year and have been on levo since, initially 50mg after that blood test showed TSH of over 16. Had another test in April, TSH down to 6.5. Doubled the meds to 100mg and another 3 months until the next test which has just come back as TSH 5.6. All going in the right direction but still major symptoms. Have an appt on Monday and am expecting to be upped to 150mg.

I have a couple of questions for people in the know........

Is it normal to be waiting this long in between blood tests?

What is the max dose of levo?

What happens if this doesn't get my levels down to an acceptable level, both clinically and symptom wise?

And finally is there anything I can do / take to help in any other way?

Tia xx

Depending on your size you're probably not you far off now - you might find 125 is the next dose and works.

It takes a while, but after I'd been on the right dose for about a year I noticed my hair was suddenly soft again, and I've had to downgrade my conditioner considerably

Obviously that's not the most important symptom but I've crossover symptoms with other stuff so that's the one I can point to and say "thyroid managed" iyswim.

hi June

ok first thing is to either visit the British thyroid foundation website or even better join them. there's a lot of bad info about thyroid disorders out there and the btf are the public arm of the British thyroid association (of consultants etc).

there are some numbers you can ring listed there or better still try to get ti a local meeting.

I have an underactive thyroid which seems to wobble a bit and I'm pretty sensitive to small changes. ime blood tests should be done every 6 weeks but I would look on the nice website for the correct guidelines. it takes around 7 - 10 days for an increase of meds to build up in the body I believe but symptoms in my personal experience take 6-8 weeks. however your tsh is nowhere near good yet. these days I believe they tend to aim for below 2.5. I'm best nearer 1. but some gps aren't very knowledgeable. they may be waiting three months to see how you actually feel but I believe the bloods are treated first and then the symptoms.

it does depend on your size weight etc. I'm 8 stone and on 150, 225 during pregnancy but I'm not sure I've a lot of thyroid left. some people I know who've had a full thyroidectomy are on 200. I once found I had to be on alternate doses of 125/150 to be balanced.

do not take calcium supplements at the same time as thyroxine..some people find it better taken at night but I forget!

I found eating healthily (avoiding sugar basically) and taking b vitamin complex helps a lot as well as exercise though it will take time to be able to do this as it affects your muscles. but when you feel better try and build strength and cardio (swimming for eg) as then if you have future wobbles you're in a fitter state. I found yoga great and also noticed I found it harder when my thyroid dipped a bit. so maybe just gentle exercise

iodine rich foods are good too ; low fat dairy and fish supply this - lots of yoghurt I found especially good as I find I get more thrush when a little under. don't take iodine supplements though, this can make things worse.

but definitely contact the btf for the best info and look at the nice guidelines. it does take time to feel better though, but you will get there!

Thanks for the advice DameFanny and Clarella.

I'll definitely have a look at the btf and the nice guidelines - hadn't though to look at nice and not come across btf before.

Tbf I am overweight atm, have put on about 14 kilos in the last 18 months (ironically after having lost over 22 in the previous 18 months), so am thinking that I'll need a fairly high dose.

Interesting about the calcium, I was given that to take after my op but no-one has mentioned it since. Clarella are you suggesting that I shouldn't take it at all or just not at the same time as the levo? I generally take the levo in the morning first thing. (I have to take other meds in the evening for a chronic back condition.)

I think I might push for a shorter time between blood tests, I am getting rather fed up of feeling so tired. I also have two dd, age 2 and 5 and find time for exercise difficult to create, but as they get older it is getting easier. And a part time teaching job, where people are quite tolerant of my forgetfulness!

Thanks again xx

I'd actually try ringing a number of a btf volunteer who is listed as knowing about your specific difficulty. is there not a consultant you were under you could speak to?

I completely understand about the exercise thing (teacher too!) you won't be able to do much until your thyroid is well managed. the thyroid really does affect your whole metabolism and so affects your digestion, muscle strength and brain.

I think the supplements shouldnt be taken within a couple of hours, however my brain has 7 month old plus thyroid fog so it's probably best to check with an expert!

some people try to avoid eating or drinking anything near taking their meds.

I think I picked up somewhere selenium helps too so a few nuts or one Brazil nut a day

what are you taking for your back? is it worth asking a pharmacist? they might know about the calcium thing actually, and I think there might be another supplement that can block absorption too but I can't remember!

the thyroid professor locally who speaks at the local btf meetings asks people to keep a close record of their blood results and how that feel inc muscles, brain clarity etc. it's worth starting to track blood tests etc and how you feel.

Iron also blocks Thyroxin uptake so best taken in the evening too. Me I take the thyroid stuff first thing with black coffee, then breakfast mid morning if I'm having anything. Calcium etc I take in the evening with neuralgia meds. I'm a total crock

thanks fanny!

actually I should heed my own advice with my bf tablets

you might need tsh at or maybe even below the minimum level on tests before you feel back to normal, but usually on here people seem ok with tsh about 1-2, with t4 high in range.
you can ask for re tests about 6 weeks after a change in levels of meds, before that the nhs isnt keen, and it does take about a month for the change in meds to show
i recommend ' understanding thyroid disorders' by toft as a guide to take with you to the gp

ooh I've just remembered; I found taking a b vitamin supplement helps energy wise. berocca or now I just take a cheaper boots plain vit b complex. I'm also sure beetroot does too

(they have done research on it and supposed to help with nrg so why not try!)

it is worth asking for tests of
b12, ferritin, vit d and folates
as at least one of these probably needs supplementing

for me, it was iron and vit d

I had a partial in March 2012 to remove a large hot nodule. It took almost exactly a year to get my levels in the right range. I was also tested every 3 months.

I was put on levo immediately after surgery. It sounds from your post that you weren't. Have I read that right?

Read your post again and it does say you weren't given levo until 2012. I suspect you would have felt better sooner if you'd had it directly post surgery. Out of interest why didn't your Endo/GP do that?

yes that's puzzled me too