New diagnosis TSH 30 and prescribed 100mg Levothyroxine

So I've been diagnosed for an hour and a half...

Slightly concerned that I haven't asked the right questions - the TSH is definitely 30 and the initial Levothyroxine prescription is 100mg

The thing is I don't feel that bad - tired and a lethargic (which I've been putting down to the menopause) but otherwise ok. What should I look out for and what questions should I be asking at my next appointment? I'm due for bloods at 8+ weeks and will speak to the Dr afterwards.

Any advice gratefully received!

15 Replies

  • Welcome to the forum, MotwCoop.

    Ask your GP to test thyroid peroxidase antibodies at your next blood test. 90% of hypothyroidism is caused by autoimmune thyroiditis (Hashimoto's) but it is handy to have confirmation. Make it a habit to ask your GP or GP receptionist for a printout of your thyroid blood results with the lab ref ranges (the ranges are the figures in brackets after the results). That will enable you to post your results and ranges for interpretation and advice and eventually interpret your own results.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in Email if you would like a copy of the Pulse article to show your GP.

    For maximum absorption Levothyroxine should be taken with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

    It takes 7-10 days for Levothyroxine to be absorbed before it starts working and it will take up to six weeks to feel the full impact of the dose. Symptoms may lag behind good biochemistry by several months.

    You should have a follow up thyroid test 6-8 weeks after starting Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

  • Thanks. I'm interested to know if being relatively symptom free but having TSH of 30 is fairly standard? Also whether a starting dose of 100mg is likely to cause any issues?

  • MotwCoop,

    Not standard but it's not uncommon for people to have high TSH found incidentally during other investigations although I have to wonder why some one is having investigations if they are symptom free. TSH 30 is quite high and you should be careful driving or operating machinery as research has shown that TSH >20 can impair reactions more than being over the drink drive limit.

    Unless you are >60 or frail or have heart disease 75-100mcg is an appropriate starting dose. Far too many people are under dosed initially which means it takes months until they are optimally dosed.

  • Oh thanks for that. I'd been in the "just menopause, put up with it" group. Relatively symptom free compared with others on this forum though.

    I was also looking at how many people seem to start with both lower numbers on TSH and lower dose, it also says in the levothyroxine information that if you're over 50 (I'm 52) the starting dose should be 50mg...I'm presuming the higher dose is proportional to the TSH?

    How long should it take to feel a difference? I'm hoping for a bit more energy.

    I notice quite a few mentions of low vit D on this forum, is that related? Mine's a little below the lower end of the range, but I've declined anything given that the test was in March and the sun is now making an appearance. Re-test in 2 months will show if it's improved naturally.

  • MotwCoop,

    Typical symptoms of hypothyroidism are

    Puberty, pregnancy and menopause are known triggers for hypothyroidism so it's about time GPs stopped telling women "it's menopause" and started checking. Blood tests can confirm menopause and hypothyroidism, it's not onerous. As HRT can help with menopause GPs should also stop telling women they have to put up with it.

    Levothyroxine dose should be proportional to TSH level, age, and heart health. My starting dose was equivalent to 200mcg the morning after thyroidectomy at age 55. If you don't feel comfortable starting at 100mcg halve your tablet and take 50mcg. It will take longer to raise T4 and T3 levels to resolve symptoms though.

    If vitamin D is below the lower end of the range it is deficient and you need supplements. How low is it?

    Hypothyroid patients often have low ferritin, vitamin D, B12 and folate. It is worth having them tested to rule out deficiency and to supplement, if necessary, to optimise levels.

    As I said above, it will take 7-10 days to absorb Levothyroxine before it starts working and it will take up to six weeks to feel the full impact of the dose.

  • Thanks for all the information...

    I'll take a while to process it all. The worst thing for me is not being able to start my day with caffeine! Not sure how I'll cope with that...

  • MotwCoop,

    You can start your day with coffee if you:

    1. Set alarm an hour before you have to rise and take your Levothyroxine.

    2. Take Levothyroxine at bedtime at least 2 hours after food, milky drink, meds and supplements.

    3. If you habitually get up to use the loo take your Levothyroxine then.

    4. Take Levothyroxine any time of day one hour before food and drink or two hours after and away from meds and supplements.

  • You really can take your pill at bed time if it's easier. The important part is to be consistent. I'm a bit surprised that a starting dose is 100 mcg. but it's been years since I was prescribed. I think I worked up to that in a couple of weeks.

  • Hi, I recently found out that my TSH was over 50 when I was diagnosed and I had absolutely no symptoms. I got tested as I had mentioned my mother had suffered from Hypothyroidism whilst I was having a routine checkup.

    My doc put me straight on 100mcg Levo and I was fine for a couple of months but then bought it down to 75 as I was feeling quite anxious all the time.

    All I would suggest is monitor how you feel and hopefully if you have a good doc they'll listen and work with you.

    Above all, you're not alone on here, the advice and support is second to none.

  • My doctor seems fairly on the ball and happy to discuss things, he drew pictures to show me what was going on!! My concern now is that I get myself educated so I know what to ask - I'm getting there I think. Thanks for sharing your numbers, I was getting a little concerned that there are many people with much lower initial numbers and that it was abnormal to be so high without specific symptoms - although I've now discovered my chronically itchy shins may be related!!

    Are you now 'optimally medicated'? How do you know?

    ho hum...I think I need to give it a bit of time to sink in and do some more reading!

  • My TSH was 40 and i was started on 100mcg Levo i knew something wasn't right but thought i was menapausal I'm only 44 turns out I'm both hypo and menapausal was diagnosed 6 weeks ago TSH down to 2.9 now.

  • Wow thanks for that. I'm so relieved to hear I'm not unusual.

  • some symptoms come on so subtly over along time you think they are normal , others smack you like a train.One week running half marathons , next week struggling to walk 100 meters and diagnosed with a tsh of 49. I was started on 25 of levo and told to give it 3 months before another blood test -the idiots.

  • Bedtime it is then...phew!

  • I started on 75 in Jan (I too am 52 and symptoms got put down to meno - though still peri) and also take at bedtime and find this works well. GP suggested 100 to start but I wasn't sure so went for the 75. 4 weeks on 100 now and get glimpses of my old self 😁.

    Have a good read up on the forum about related diet and supplements as these make a difference to absorption.

    Best wishes 🤗

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