I had my six month blood test the other day and my TSH has gone down to 0.2 (normal range is 0.27-4.20). Doctor said it's not hugely under "normal", but has recommended switching from 100mcg to 75mcg to see how it goes. He has acknowledged that might then be under-dosing me and we might need to readjust again.
I'm already a little nervous about switching doses and disrupting how I'm feeling at the moment. What makes me feel even worse is that Mercury Pharma, the brand that I have been using since I started on levo, don't make packs of 75mcg and I've been given Teva. I have been really good on Mercury Pharma with no known side effects and it's obviously working, whereas I have not read/heard good things about Teva. One that has stuck in my head is that people gained a lot of weight when switching to Teva and while it feels really shallow to say this terrifies me - I have a history of eating disorders and I'm really scared that could trigger something.
Long story short, the idea of changing doses and brands at the same time is making me feel really anxious. The worst part is, I couldn't collect my prescription, so my housemate did and I know have three packets of Teva levo at home. Usually my GP only prescribes one pack at a time. I feel terrible wasting it and not just taking it, but I also want to respect my own boundaries when it comes to my health.
Am I being totally unreasonable? Does anyone have any advice on how to manage it? I was going to call the doctor today but I always feel such a nuisance and so dismissed.
Thank you.
Written by
ellerc93
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I would strongly recommend changing one thing at a time - the dose or the brand.
You could continue to get Mercury and cut the pills to the right dosage.
Also post your T4 so we can see if you really ought to reduce your dose, doctors can and should be challenged.
I also feel a drop of 25mcg might be too severe.
Final thing to add is you can work up a weekly dosing schedule without the need to cut pills. Work out how much hormone you need per week and take different amounts on particular days so you total the same across the week - you can get a 7 day or 14 day pill box to help you keep track.
Hey, thank you so much for your quick reply. They only tested my TSH this time, so I don't have my T4 result to give.
Yeah, the drop is another thing that's making me so anxious - originally the doctor had suggested alternating between 100mcg and 75mcg daily before then recommending 75mcg daily, his logic being if I swing off back in the hypo direction it'll be clearer that I need to be medicated more. He doesn't seem to realise that this experiment affects a human being rather than some lab tests.
I'm getting so nervous about calling them this morning because I know I'm just going to be seen as a nuisance patient when they have a lot of stress and patients to deal with
They get paid to do a job, just like the rest of us. How would their attitude be if you were calling an estate agent or car dealership, you’re not a nuisance then!
I would agree with the 100 and 75 alternate days as it’s a gentler drop. Then see how you feel and retest in 6 weeks. If you have enough tablets spare you could do this easily.
Your T4 needs testing before a change in meds, TSH can fluctuate wildly if you have autoimmune thyroid disease hence TSH should not be used in decision making in isolation.
Challenge the GP and say you won’t reduce dose until both TSH and T4 are checked.
I think the more gradual change is something I'm going to request when I call today about the changing of prescription. My pharmacy said they could give me 50mcg's of Mercury Pharma instead and I could have 1.5 tablets daily to make it up to 75mcg, but that this needs to be on my prescription.
I wondered whether a single TSH result was enough to change my dose (as I do have autoimmune TD). I don't have many symptoms of over-medication, no. I've maybe been a bit hotter than normal at times (although I've also felt the cold when no-one else has in the same time period) and my hair loss has started up again. I've also been a bit restless, but a put that down to lockdown and the gym's not having opened until recently.
I would ask for bloods again before you make a change.
It’s important that T4 is checked. I’ve seen my TSH fluctuate randomly despite stable T4 levels and stable dose of T4. You can see my results in my old posts. That tells you TSH cannot be relied upon for dosing decisions. Don’t mess yourself up because of your GP’s incompetence.
My pharmacy said they could give me 50mcg's of Mercury Pharma instead and I could have 1.5 tablets daily to make it up to 75mcg, but that this needs to be on my prescription
When I was on levo-only, I took 125 x 3 days and 150 x 4 days. My prescription was just for a quantity of 25, 50 and 100 mcg tablets [no idea now what brand(s) they might have been] - the GP trusted that, as a numerate grown-up, I could do the maths and take the right number/ combination of tablets each day until I had used them all up ...
And I've not heard that Teva causes weight gain - but certainly in my experience, being under-medicated can Would like to reinforce everyone else that if you don't feel ill, you shouldn't reduce the dose on the basis of TSH alone. Good luck x
Those were my thoughts too - I'm an adult and can do simple math - but apparently they can't give me anything unless it's specifically prescribed by a doctor 🤷♀️
Thank you for the affirmation that my gut isn't telling me something completely stupid. Really appreciate the time you've taken to reply
The quantity of tablets to dispense was on the prescription - ie 1 pack of 25 mcg; 1 pack of 50 and 2 packs of 100 - and that was enough (but we are talking 5 years ago) x
Never agree to reduce levothyroxine dose based on just testing TSH
Insist on FULL Thyroid and vitamin testing
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
About 90% of primary hypothyroidism is autoimmune thyroid disease
Ask GP to test vitamin levels and thyroid antibodies plus Ft4 and ft3
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
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 thyroid antibodies or all relevant vitamins
Thank you so much for all of this information. Really appreciate it and definitely going to look into the private tests as I strongly feel my GP will not agree to them.
If your full results show over medicated and need to reduce dose (unlikely) then you would probably only reduce by 12.5mcg initially, not 25mcg. That’s too much
Many people find Levothyroxine brands are not interchangeable.
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
Suggest you take Teva back to pharmacy and ask for different prescription of 25mcg and 50mcg tablets
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.
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
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
What vitamin supplements are you currently taking
No other medication or vitamin 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)
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
This is so incredibly helpful, thank you so much. I'm deeply grateful.
I'm about to call the doctor to ask for a full panel before changing. I'm worried he'll refuse - in this case do you think I should get private testing and hold off changing my dose until then?
Re: brands not being interchangeable - this is what I've read everywhere and it seems nuts that doctors aren't aware of this. I'm definitely going to use that article when I speak to my doctor. I feel awful taking the tablets back as I know the pharmacy can't re-use them
I always take my levo in the morning, at least an hour before any food/drink. I take vit d, b vitamin complex, magnesium and zinc about four/five hours after taking the tablet, and then iron, l-lysine and arginine in the evening.
I didn't know that I should delay my levo until after my blood test. I had the blood test taken about 4pm and had had my levo as usual that morning - no fasting either. I also didn't know about avoiding biotin. So would you recommend stopping my vitamin supplements now and having my blood test (if my GP agrees to it) next week?
Yes definitely...retest as early as possible in morning before eating or drinking anything apart from water and last dose levothyroxine 24 hours before test... always
So you can legitimately say , as you forgot to stop biotin supplements, test needs redoing
NHS rarely tests more than TSH and Ft4 , so you likely need to test privately to get Ft3 and vitamin levels tested
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
“According to the current TSH reference interval, hypothyroidism was not diagnosed in about 50% of the cases in the afternoon.”
“Further analysis demonstrated inadequate compensation of hypothyroidism, which was defined in 45.5% of the morning samples and in 9% of the afternoon samples”
TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.
So I spoke with a different doctor today who was a lot more patient and gave me time to ask my questions.
She assured me that the TSH values are enough for now but agreed that a drop to 75mcg 7 days a week might be too extreme and so I am going to alternate between 75mcg 4x per week and 100mcg 3x per week.
She also agreed to prescribing 50mcg instead of 75mcg - I can split a tablet to make up the dose and then continue using the brand I trust.
When I have my re-test in eight weeks I am going to request the full panel (including vitamins) then, as it will have been a year since my last full screening and I will explain that I was supplementing up to the blood test and I want to make sure I have accurate results. Not exactly what I was hoping for but I just can't afford private testing at the moment and eight weeks doesn't seem too long to wait. It will also give me time to stop taking the supplements in the lead up to it.
Again, thank you so, so much for your advice and input.
I found that teva did not agree with me, so I take 2 tablets a 25 and a 50 each day it was the filler in it. Just trial and error. Went back to my previous make which agrees with me.
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