I haven’t been on for a while but this forum helped me a couple of years ago and I’ve got my fingers crossed for help again.
My friend, she’s 48, has had routine thyroid blood test done…she had a thyroidectomy some years back and is currently on 100mcg daily and the results came through today:
TSH 10.6 miu/L (range of 0.27 - 4.2)
She is currently experiencing symptoms of under active thyroid (same as what I went through a couple of years ago) and her GP wants to keep reducing Levo intake.
My instinct is that Levo needs to be increased (she was on 325mcg) not decreased…treat the patient not the bloody test results.
Any suggestions would be gratefully received
Written by
markwsteele
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Does she always get same brand levothyroxine at each prescription
Is she lactose intolerant or gluten intolerant
Does she always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
No other medications or supplements within 2 hours……some like iron, magnesium, vitamin D, HRT not within 4 hours
Just testing TSH is completely inadequate
Likely poor absorption or conversion
Likely low vitamin levels too
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common, especially when under medicated
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Treating the b-----y test results would also result in an increase in levo - keeping a patient on a TSH of over 10 when they're already on levo is just plain negligent. It's more than double the top of the lab range and nearly FORTY times higher than the bottom of the lab range.She needs to see a different GP as a matter of urgency and point out just how bad this result is.
Levo should be increased in 6 -8 week increments until TSH is less than 2 and free T4 and free T4 are nice and high in range. This idle incompetent GP needs to test her thyroid hormones instead of just testing TSH - and her key nutrients. I've had some success by saying that these are the tests recommended by Thyroid UK - TSH, free T4, free T3, ferritin, folate, vit D and B12.
Can you come with her for the next appointment - she is so under-medicated she probably can't fight her corner hard enough on her own
That's WEEKS away - can she get something more urgent? Or go to A&E to get more competent treatment?
It's worth emphasising that if an under-active thyroid is so serious that it entitles you to free prescriptions (which it does), it's sufficiently important that a TSH result of potentially 40 times more than it should be, following repeated no doubt incorrect dose decreases needs urgent attention
She takes vitamin D AT THE SAME TIME as her levo…because that’s what the quack told her. She didn’t know about not taking it around food or caffeine until I told her…I think the quack needs the sack
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 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
Different brands levothyroxine
Many people find Levothyroxine brands are not interchangeable.
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
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
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).
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
I’m going off on a slight tangent here now because I’ve just checked my brands….I’m on 75 one night and 100 the next…75 are Teva and the 100 are Northstar. Looks like I need to ring my quack tomorrow too
I haven’t had a vitamin test done in 2 years. I was on 100 a day until my last blood test on 28/10…tsh was 1.6 (0.27-4.2 range) and ft4 was 22.0 (13.1-21.3 range). My dose was then altered to 75/100 every other day…I feel a lot better than I did, probably back to as normal as I’ve ever been. About a year ago I switched my levo to night time and that made such a big difference to me because I am now able to take it at the same time every day. I’m due medication anyway so I’ll just make sure I request the same brands
You say the doctor keeps decreasing her dose? So that sounds to me like he thinks less medication might bring the TSH down. Which if that's the case, he's utterly clueless and might kill her! She desperately needs to see someone else. This person is not competent. Is there another GP at the surgery? Or the after hours is a good idea. Anything to get a different doctor involved and up her medication. It's going to take her months to recover from this and get her TSH under 2.
`if this result came through today it would be totally wrong for any GP (however stupid ) to ask for a further reduction from 100mcg.. the correct course of action in response to seeing a TSH that high would definitely be to increase the dose. I suggest she ring reception and ask for a GP to look at this result and write her an urgent prescription for an increased dose..
There should not even be any need for an actual appointment, (unless she wants one) ... they are quite happy to reduce /increase dose based on just TSH results (via text message !) when it suit's them.
Absolutely appalling. Once she is well I'd put a formal complaint in. This GP is causing harm..He clearly doesn't understand that a high TSH means you need to INCrease not DECrease her medication. If she needed 325mcg originally how on earth would such a massive decrease be needed with no thyroid, even if done over time!! I feel Gps are less and less competant to deal with many conditions these days. Their clinical & medical skills are very poor. My own experience of them is scary with mis management of meds, not understanding what basic well known medications are for yet they are expected to manage them, no follow up & constant fast tracking for conditions they shouldve managed in-house. My GP couldn't even diagnose a broken leg! They seem to be little more than pen pushers these days...& shouldn't be allowed near patients!
Thankfully because of the fantastic information and guidance I got from here when I was first unwell…I knew this community would help again…and it has. We are so grateful.
As TSH test has resulted after such a huge dose reduction it is prudent to assume it to be true and your friend is extremely under medicated.
If your friend had a thyroidectomy for cancer there is a strong need for TSH suppression anyway. Tell your friend to ask her GP to check out the NICE guidelines asap.
You bet she needs an increase in Levo, the poor girl. This is my old GP's way of treating high TSH even for slightly elevated TSH he reduced my Levo everytime. I felt so ill I had to learn how to treat myself to get to feeling anything like normal.
I wish her lots of luck, but she would really benefit from joining TUK in her own right if she can spare the time. She is lucky to have a pal to help her.
She’s let me help because this community helped me…and she’s seen the difference it’s made. For now she’s happy using me here but I have tried and will try again to get her here on her own. Thanks again for the help and advice
Youre a great friend and I suspect with the state the GP has rendered her in she isnt able to think straight let alone deal with a forum.......really hope you can get her the increase urgently needed and start her back on the road to recovery. Its going to take time though.
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Thyroid test results received, further advice would be gratefully received!
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