Can I have you thoughts on these results? - Thyroid UK

Thyroid UK

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Can I have you thoughts on these results?

10 Replies

At the moment I am only having TSH tested by the GP. (I'm waiting to test privately until next month when I've been taking Vit D for 3months!)

10th August - TSH 5.88 -9:10am test - taking 25mcg levo

8th October - TSH 5.44 - 9:20am test - taking 50mcg levo.

I fully expected my TSH to be lower but it's hardly moved. I have been prescribed 75mcg so I'll start that tonight. I appreciate that TSH alone is a bit useless but is it usual to have not much movement between increases?

Thanks! :)

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10 Replies
SlowDragon profile image
SlowDragonAdministrator

Which brand of levothyroxine are you currently taking?

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Are you currently taking Teva?

Teva, Aristo and Glenmark are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Guidelines on dose by weight of levothyroxine is 1.6mcg per kilo of you weight ....so unless very petite, most people will need at least 100mcg, often higher

But necessary to increase dose upwards slowly

in reply to SlowDragon

Thanks Slowdragon! I'm taking Northstar, which I think is Teva? I don't think I've had any problems on it... What sort of problems do people usually report?

Been on the same brand since I was prescribed 16 weeks ago.

SlowDragon profile image
SlowDragonAdministrator in reply to

Northstar 25mcg is Teva

Northstar 50mcg is Accord

healthunlocked.com/thyroidu...

See Teva poll in reply above

Some people love Teva. It’s a Marmite brand

helvella profile image
helvellaAdministratorThyroid UK in reply to SlowDragon

Or here:

dropbox.com/s/6h3h0qi4eqwi6...

shaws profile image
shawsAdministrator

The aim, once diagnosed, is a TSH (from pituitary gland) of around 1. Most doctors think once it is in range (even top) that we're on a sufficient dose. However, they fail to test the FT4 and FT3 that are more informative than TSH alone.

in reply to shaws

Yes, I am prepped for a bit of a fight to get my TSH to 1ish but I remain optimistic for now! :)

shaws profile image
shawsAdministrator in reply to

We need optimism and, finally, when we get to a dose that suits us our symptoms resolve.

tattybogle profile image
tattybogle

hi, geworgie.

when i first started levo my TSH didn't move much

6.8 without any levo

after 6 wks on 50 mcg.....2.9 [0.36-4.1]

after 5 mths on 100 mcg....2.5

after 3 mths on 150mcg....2.7

One yr later after increase to 175 (ish!)mcg ......... 0.001 [0.02-6] and FT4 now over range

so reduced back to 150

After 6 wks on 150mcg....... 0.09 [0.02-6] . just within range and FT4 only very slightly above range, so they let me carry on.

From where it has never changed much on doses of 150 ,125 ,112, 100, 112 over about 20 yrs. ( apart from one time i took no levo for 10 days to see what would happen to TSH and it went up to 7 !. don't try this at home folks. feels rubbish.)

in reply to tattybogle

Thanks Tatty, that's really interesting. I can't afford to test privately every 8 weeks so I only have the drs tests to go on.

Which means it's all theoretical at this point!

I had started to feel much better so I had assumed that my TSH would be lower (because presumably my T4, and therefore in turn my T3 would be higher). I also went GF 10 days ago and am staggered by the difference it's made.

Could my T4 and T3 be higher now without lowering my TSH? 🤔 That seems to defy logic though!

tattybogle profile image
tattybogle in reply to

TSH is slow to react (hence the 6 weeks wait for a test), i look at it like a window onto the recent past.

(In my opinion, sometimes it seems to stick and then move loads all at one. like a sliding door that's runners are rusty you shove loads and it doesn't move , then it moves all at once)

Whereas FT4/FT3 tell you what's happening today .

So you have to bear this in mind when thinking about TSH.

Don't worry too much about TSH , it's all about how you feel .

We only talk about TSH so much on here because we have to learn to speak the same language as GP's in order to argue with them effectively !

FT4 and FT3 are the best way to tell what's happening, and TSH is a poor relation, because it's so slow , and has other curious behaviours too.

It's so annoying that they don't do full FT4 and FT3 each time, its much more interesting when they do, but those of us that can't afford it have to make do with peering into the foggy crystal ball that is TSH.

Fortunately when i got my NHS records i found TSH /FT4 are done normally , and i even got a few FT3's when they were freaking out about me being overmedicated.

Well done for changing you diet, and hope you continue to feel better now on the 75.

It's a good idea to keep a record of how you feel every few weeks and the brand and dose you are on with any changes to diet /supplements. You might find this info becomes useful over the years.

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