I was diagnosed with hypothyroidism, vitamin D and B12 deficiency a few years ago and have been on medication. I take levothyroxine alternating between 100mg one day then 75mg the other. I do get extremely fatigued, muscle weakness and aches and pains. The way I describe it as if someone had stuck a needle in my body and drained all the energy out of me. Lately I have been getting numbness and pins and needles in my hands and feet and put it down to lack of B12 as my GP reduced my injections so I got some bloods done from medichecks but they state my b12 is ok and my thyroid levels are contradictory and that it might be down to taking biotin, but I haven't taken that. Just wondering if anyone could comment on my results please and give any advice please. Also could my thyroid be the reason I'm getting pins and needles ? Thanks in advance.
Ferritin 67 ug/L (13-150)
Folate serum 5.3ug/L (2-9)
Vit B12 active 119 pmol/L(25.1-165)
Vit D 90 nmol/L (50-200)
TSH 1.97 mlu/L (0.27-4.2)
Free T3 3.1 pmol-L (3.1-6.8)
Free thyroxine 10.2 pmol/L (12-22)
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The reason you feel so awful is because you are very under-medicated. I'm assuming your doctor is prescribing on the basis of your TSH, and he/she assumes that your level is fine because it is close to mid-range. But TSH isn't the wonderful measure that doctors think it is.
Someone who is hypothyroid and feels well is likely to have a Free T4 around 60% - 80% of the way through the range. Yours is under range. And they will have a Free T3 from 50% - 70% of the way through the range.
But even these suggested levels are just generalisations that shouldn't be taken as absolute rules. You might feel great with both Free T4 and Free T3 around 80% - 90% through the range. Some people need Free T3 to be slightly over range. Some people may feel well with Free T4 and Free T3 around 50% of the way through the range.
The first thing you need to do is to point out your dreadful Free T4 and Free T3 results to your doctor and ask for an increase in dose. You currently take alternating 75mcg and 100mcg. I would suggest going up to alternating 100mcg and 125mcg every day and then testing in 6 - 8 weeks, then depending on the result you might end up eventually on 125mcg or 150mcg per day, every day, testing after 6 - 8 weeks on each new dose. It is impossible to predict.
The second thing you need to do is maximise any benefit from your dose of Levo. It should always be taken on an empty stomach with plain water. It needs to be taken at least 2 hours after food and 1 hour before food. Common times to take it are in the middle of the night when you get up to go for a pee, or as soon as you wake up, then delaying food and drink for an hour, or possibly just before going to bed at least two hours after any food and drink (except water).
Another thing to bear in mind is that supplements also affect absorption of thyroid hormones. If you take iron, magnesium, vitamin D, calcium, or oestrogen there must be taken four hours away from thyroid hormones. Other supplements and medicines need to be taken two hours away.
Another thing which improves how many of us feel is eating a gluten-free diet. And it can't be "almost" gluten-free, it must be absolutely 100% gluten-free. It isn't essential to suffer from coeliac disease to get any benefit. If you give it a 3 - 4 month trial and get no benefit then you can try introducing gluten again. If you don't feel worse then continue eating it. But many of us give it up permanently.
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
New NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking levothyroxine
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
please email Dionne at
tukadmin@thyroiduk.org
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
Do you always take levothyroxine on empty stomach and then nothing apart from water for at least an hour after
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
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
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
Thank you for your reply and the links and will have a read. Yes I had my bloods taken on an empty stomach around 8.45 am as that was the earliest I could get my bloods taken. I haven't tried gluten free as of yet but seems a lot of people recommend that.
I do take levothyroxine first thing on a morning on an empty stomach. The brands for the 100mg and 50mg are the same almus and the 25mg mercuryPharma. I have been with these brands since I started taking the medication.
As for my weight I'm average to slim. I haven't weighed myself in a while but last time at the doctors I was around 52 to 53kgs.
I wouldn't be able to up my dose until speaking to my GP and they will want to take bloods as I wouldn't have enough levothyroxine as they only give me enough for the specific dose and time.
What are your thoughts on purchasing medication with T3 in. I read a while back that some people felt better with this and others didn't. Do you have any experience with this ? Also I imagine the GPs frowning upon this
What are your thoughts on purchasing medication with T3 in. I read a while back that some people felt better with this and others didn't. Do you have any experience with this ? Also I imagine the GPs frowning upon this
First step is to get dose increase in levothyroxine
Trialing strictly gluten free /dairy free
You don’t need to have any obvious gut issues
Getting levothyroxine dose increased slowly upwards in 25mcg steps until Ft4 at least 50-60% through range
if Ft3 remains low …..then is time to consider T3
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
That’s really interesting SlowDragon, I usually take my Levothyroxine in a morning, but I’m also supposed to take Lansoprazole before anything to eat or drink, so taking the Levothyroxine at night might work better for me.
Thank you SlowDragon I will read the links you have put on. I initially was put on Lansoprazole many years ago because the DMARD tablet Azathioprine I was taking caused stomach problems. 3 years ago the Dr stopped this tablet and I came of the Lansoprazole. Things went downhill from there and in 2019 I was diagnosed with Peptic ulcers. They put me back on Lansoprazole and after 9 months felt much better. Then my liver specialist decided to change me onto Ranitidine, I ended up with Peptic ulcers again in 2020. I am now on Lansoprazole for life. I was also during this time I was diagnosed with Hiatus hernia
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