Newbie

[Debbiedoodah11]

Hi, I’ve just been diagnosed with hypothyroidism.

Not sure what to expect. Started taking levothyroxine today. Feel unsure as to what to expect. Any advice is appreciated. Thank you!

[fuchsia-pink]

Welcome to the forum - and well done on finding us! It's a kind and friendly forum, so please ask about anything you aren't sure of. I don't want to bombard you with info, so here are a few first thoughts:

1 Always have an early morning blood test, when TSH is highest and please ALWAYS get your actual blood results afterwards, so you know what they were and what has been tested. Far too often we're told we''re "normal" or "in range" or "getting there". You don't want that: you want to see actual numbers

2 You need the right blood tests. The GP will always do TSH (thyroid stimulating hormone). This is a message from the pituitary to the thyroid telling it to work harder (so TSH gets bigger) if your thyroid isn't making enough hormone.. It's a useful primary diagnosis tool. but it isn't enough just testing TSH, especially once you're on meds, becuase measuring TSH doesn't tell you if the thyroid has received the message or is acting on it - for that you need to see your actual thyroid hormone results

Your thyroid produces T4 so you also need free T4 testing, which shows the amount of T4 available to use. This is usually the GP's second test and isn't controversial. Your T4 needs to convert to T3, the active hormone needed in every cell of your body, so you really need free T3 testing too. Arguably this is the most important test, as some people (like me) are "poor converter" - but it is the hardest to get on the NHS.

It's worth getting thyroid antibodies tested - at least once: if these are high, it shows the reason you are hypo (under-active) is Hashimoto's or Hashi's - by far the biggest cause of hypothyroidism. If you have Hashi's, your antibodies will jump about as they see fit. You are not "getting better" if they go down - they'll just jump back up another time, so you only need one over-range result

Then ideally, once a year you also want key nutrients testing - ferritin, folate, vit D and B12 - but you will have to ask for these, as GPs don't cover nutrition in their training. You want these to be good to get the best from your levo, but a lot of us hypos need to supplement. I've had some success with my GP by saying that these are the tests recommended by Thyroid UK. If the GP can't or won't test them, you will see LOTS of posts here about private testing, so it's worth doing them privately now an again if you can.

You'll need to test blood every 6 - 8 weeks while you get onto the right dose of meds - with 25 mcg a day increases until you get to the right place for you

3. Always take your levo every day, on an empty stomach, just with water - an hour before other food and drink or two hours afterwards, and well away from any other medication so that you absorb it fully. it doesn't matter if it's in the morning, at night or you split the dose, but have your last dose 24 hours before a blood test, so that you have a good representative level of hormone in your blood but not a "spike"from just having taken your meds. Take the next dose straight afterwards.

4. Finally (for now) have a good rootle around the hypo section of the main Thyroid UK site - and at helvella 's excellent glossary [saved in "pinned posts"]

Good luck x

[Debbiedoodah11 in reply to fuchsia-pink]

Thank you SO much! I had no idea about any of that really. My doctor just told me to have another blood test in 6 weeks and we’d chat again then. To apply for a medical exemption certificate and basically good luck! I really appreciate you taking the time to put all that out for me. Thank you. X

[SlowDragon Administrator]

Welcome to the forum

How much levothyroxine have you been started on

Which brand of levothyroxine

Many people find different brands are not interchangeable

Important to get thyroid antibodies and vitamins tested if not been tested yet

ALWAYS get copies of your blood test results and ranges

Keep good records of how you feel at each dose

[Debbiedoodah11 in reply to SlowDragon]

Hi, I’ve been started on 50mg and the box does just say levothyroxine - is that what I’m looking for? Thank you for giving me more info, I can see results on the NHS app, will the info I need be on there? Sorry to ask so many questions x

[SlowDragon Administrator in reply to Debbiedoodah11]

Levothyroxine is made by variety of different manufacturers

Most common and well tolerated

Advanz - Mercury Pharma - make 25mcg, 50mcg and 100mcg tablets

Activis - also boxed as Almus via Boots or Northstar via Lloyds

Activis only make 50mcg and 100mcg

Wochardt - well tolerated. Only make 25mcg tablets

Less easy to tolerate

Teva brand

Makes 25mcg, 50mcg and 100mcg tablets

[Debbiedoodah11 in reply to SlowDragon]

Can I also ask, if you or anyone else knows .. is hashimoto’s hypothyroidism or is that another thing altogether? My soft die didn’t mention it at all, but I’ve seen that hashimotos is 90% the cause of hypothyroidism. It’s just all very confusing! Thank you

[SlowDragon Administrator in reply to Debbiedoodah11]

Has GP tested thyroid antibodies?

Add results and ranges if you have them

U.K. medics never call autoimmune thyroid disease Hashimoto’s

They don’t generally understand the autoimmune aspect so often don’t test thyroid antibodies