Hi I have been on Levo for over a year. Ive been dr bout brain fog. Head spinning and pruney fingers and feet if contact with water for short period of time. Also all joints cracking and hurt. They tell me Im on right dose. Advised to take vit d as low but 2 months in sypmtoms still there virtually continuously. Please can any one give advise. Thank you in advance
Symptoms dizzy head etc: Hi I have been on Levo... - Thyroid UK
Symptoms dizzy head etc
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Sara197
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Sorry you aren’t feeling well Sara197. It sounds you like are not on the correct dose as these symptoms often appear in patients who are hypo and they certainly appeared for me when I was under medicated. Why were you put on levo in the first place? Have you had a recent blood test to check thyroid levels and vitamin levels? If so, do you have the results? If not ask the surgery receptionist to tell you what your results are including the reference ranges and post them here, this will give the administrators more to go on when giving advice. If you doctor isn’t keen to do a full thyroid blood test, there are private ones you can do for around £29. I’m not an expert (I’ve just been through it) but there are lots of experts on here who will be able to offer great advice if you are able to provide more information.
Hi my thyroid March last year was at 134 i got hypothroid. I had bloods done about 2 and a half months ago due to me feeling exactly how I do now. They said my thrroid bloods come back normal but I had vit d deficiancy advised to take 2000mcg of vit d but I feel like im loseing my marbles at times. And the head spinn makes me feel sick. Even my mouth feels like lips are swelling at edge that rests in my mouth. I wear gloves at work as Im a carer and when they sweat they prune up and that bad at times its painful. I will ask my doctor if he can give me a read out of results can you tell me which results to ask for please. I did say to doctor that i feel im undermedicated as I was so unwell before being diagnosed and it feels like some of the symptoms I had then but the dr said that result was fine.
SlowDragonAdministrator
Welcome to the forum
How much levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
When were thyroid levels last tested
Please add results and ranges
Exactly What vitamin supplements are you currently taking
How much vitamin D
How low was vitamin D before starting on supplements
When were vitamin D, folate, ferritin and B12 last tested
Hi Slow DragonIm unsure of how bad vit d was just remember him saying im 10 away from having to take 5000mcg. Im on folic acid as that waslow in november last year. Im on 75mcg of levo. They checked my bloods about 2 months ago
Sorry also can different brands of levo make you unwell. I dont always get same brand
Yes …..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 are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but doesn’t make 25mcg tablets
beware 25mcg Northstar is Teva
List of different brands available in U.K.
thyroiduk.org/if-you-are-hy...
Teva poll
healthunlocked.com/thyroidu...
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.
New guidelines for GP if you find it difficult/impossible to change brands
healthunlocked.com/thyroidu...
academic.oup.com/jcem/artic...
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
verywellhealth.com/best-tim...
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
75mcg levothyroxine is only one step up from starter dose
Which brand of levothyroxine are you currently taking, is it Teva (Teva is only brand that makes 75mcg tablets)
Teva badly upsets many people
Approx how much do you weigh in kilo
Guidelines On dose levothyroxine by weight is approx 1.6mcg per kilo of your weight. So unless very petite, most people will need at least 100mcg levothyroxine per day
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Being under medicated for thyroid results in low stomach acid. This frequently results in poor nutrient absorption and low vitamin levels as direct result
Essential to regularly retest vitamin D twice year when supplementing
Testing folate, ferritin and B12 annually minimum
Do you know if you have had thyroid antibodies tested to confirm autoimmune thyroid disease also called Hashimoto’s
About 90% of primary hypothyroidism is autoimmune thyroid disease
SlowDragonAdministrator
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
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
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.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
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.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Guidelines are just that ....guidelines.
Some people need more some less
The first step to getting well is to get a print-out of your blood test results. You need to know exactly what was tested and exactly what the results were. You cannot take your doctor's word for anything because a) I doubt he know very much about thyroid and b) doctors are notoriously bad at understanding blood test results. These are things they just don't learn in med school. So, if you post your results and ranges on here, experienced patients will be able to interpret them for you. Without them, there's not much anyone can say. 
Hi yes i take 50mg of teva and 25mg of wockhardit. I am approx 78kg. I have for last 2 months had 75mg of teva . I did have a thyroud antibodies test and that came back ok as receptionist put it.my last blood test I followed the advice off here all as you put above.
I will contact doctors on Monday and ask for full read out. Do they have to give it to me or could I be in with a struggle
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively if no online access to test results ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
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 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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).
You are legally entitled to copies of your blood test results and ranges
“OK” on antibodies test ….that’s not a result but an opinion
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Is this how you did your tests
Based on weight …..Likely to need dose increase in levothyroxine up to 100mcg
Teva maybe an issue too.
Teva upsets many people
If not had vitamin D, folate, ferritin and B12 tested, request they are now
Thank you all for advice I will ring first thing in the morning for test results and get back to you with all results. In the mean time I will buck to see a doctor again and see if I can have antibodies test done again as last test was at last doctors over a year ago.
If antibodies test was positive, they are unlikely to repeat it
About 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s
Extremely important to regularly retest vitamin D, folate, ferritin and B12, especially if cause is autoimmune thyroid disease
Have you had coeliac blood test done yet
78kg x 1.6 = 124mcg as the likely daily dose levothyroxine you will eventually need
But we frequently need to increase dose slowly upwards in 25mcg steps
So getting on 100mcg next step
Print out all guidelines on dose by weight and links I gave you showing TSH should be under 2
Be ready to argue/push for dose increase in levothyroxine to 100mcg daily
Retest in 6-8 weeks
Meanwhile working on improving low vitamin D and B12 levels
Low B12 often causes sensation on walking on small boat/feeling drunk
Get hold of thyroid antibodies test results
Request coeliac blood test done
Ok I will see what doctor suggests as I cant go on feeling this unwell. I will post results as soon as I get them. Thank you all
Just saw last bit what is a coeliac blood test for. Im unsure as Ive not heard doctors mention that
Have a look here:
coeliac.org.uk/information-...
Ok I dont belive I have been tested for that will mention to the doctor. Thank you
Sorry I deleted those messages as I think I made a mistake. I think I read email wrong and clicked on donate of which Im fine with. Can I apologise for my mistake.
As has been said you are legally allowed copies of results, I keep all my blood results so I can compare each time they are done, my surgery is very good they will even print them out whilst I wait at reception, always have printed copies or access online , then you have details of exactly what was done and all the results including ranges. Best of luck
I got my blood test read out
Blood test results
2nd page
Bloods
Was this test done after minimum 6-8 weeks on 75mcg levothyroxine
Was test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
TSH is 2.64
This shows you need 25mcg dose increase in levothyroxine
On levothyroxine TSH should ALWAYS Be under 2
Slowdragon. Would like to say a huge thankyou for all the info you gave me. Just got off the phone to my doctor. He has uped my dose to 100 and is seeing me in 8 weeks. The doctor himsrlf instead of the nurse I kept getting. Thank you again im nervous at challanging doctors but all the info I sent spoke for me.
Suggest you try a different brand other than teva
Available in 100mcg tablets are
Mercury Pharma make 25mcg, 50mcg and 100mcg
Accord, makes 50mcg and 100mcg tablets, also boxed as Almus via Boots or Northstar via Lloyds. But doesn’t make 25mcg tablets
Recommend getting FULL thyroid and vitamins tested via Medichecks, Blue Horizon or Thriva after 6-8 weeks minimum on constant unchanging dose and brand of levothyroxine
Make sure you test early Monday or Tuesday morning and then post back via tracked postal service
Only test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Important to work on improving low vitamin levels as well as this makes it easier to tolerate higher dose levothyroxine and reduces symptoms
Hi I have ordered all Vitamins you advised and also probiotics as my stomach has been messed up with it all. Yes I will get one of those at home tests. Hopefully find my self again one day.
Only make one change at a time
So initially increasing levothyroxine
After 2-3 weeks start vitamin D (if not started already)
Wait 2 weeks
Then look at adding the rest one by one, waiting 2 weeks each time
If you start everything at once you can’t see what’s helping or not
Ive been on vit d for 2 months. Since blood test. So will try b complex next do you think?
Started my 100 levo this morning so il give it 2 weeks before starting b complex
Yes, sounds like a good plan
Remember to stop taking vitamin B complex a week before any blood tests as contains biotin, which can falsely affect test results
Which brand of levothyroxine is 100mcg ?
Hi I havent picked them up yet just took another 25mg of what I had
Try to get
Mercury Pharma (makes 100mcg, 50mcg and 25mcg tablets)
or
Accord brand
Makes 50mcg and 100mcg tablets
Hi they gave me northstar 100mcg. Ive read that the 25mg are teva. Is this the case yet with the 100mcg
Northstar 50mcg and 100mcg are Accord brand
Also available in Boots as Almus
Accord don’t make 25mcg tablets
Ahhh ok. So hopefully be ok off these then. Thankyou
Contact GP for 25mcg dose increase in levothyroxine up to 100mcg
Suggest you try different brand from Teva unless you suspect you are lactose intolerant
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
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
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Aim is to bring a TSH under 2.5
UK guidance suggests aiming for a TSH of 0.5–2.5
gp-update.co.uk/SM4/Mutable...
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
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Just testing TSH is completely inadequate
If GP can’t/won’t test TSH, Ft4 and Ft3 use Monitor My Health (private NHS testing service) to get tested
£26.10 if order via Thyroid U.K. website offer code
Sorry I have emailed above for a copy. Thank you so much for your help
No antibodies test results
Can you get these results?
They were taken when i lived in wales now live in England
You should still have access to all previous test results
They will be on your medical record
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
The antibody results the doctors is a 3 hour drive to collect
The results are all online and held at your new GP surgery
You don’t need to contact old GP
SlowDragonAdministrator
Vitamin D and B12 are too low BECAUSE You are under medicated for thyroid
Low vitamin D
GP should prescribe 1600iu everyday for 6 months
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But improving vitamin D to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly via NHS private testing service when supplementing
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with hypothyroidism we frequently need higher dose than average
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
grassrootshealth.net/projec...
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Taking too much vitamin D is not a good idea
chriskresser.com/vitamin-d-...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
2 good videos on magnesium
healthunlocked.com/thyroidu...
Vitamin D and Covid
Notice how much vitamin D many of these medics are taking
SlowDragonAdministrator
Only add one supplement at a time and then wait at least 10-14 days to assess any reactions ……before adding another
B vitamins
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels too
B vitamins best taken after breakfast
Thorne Basic B is an option that contain folate, but is large capsule. You can tip powder out if can’t swallow capsule
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
IMPORTANT......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
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low B12 symptoms
b12deficiency.info/signs-an...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
cytoplan.co.uk/shop-by-prod...
healthunlocked.com/thyroidu...
Wow alot to take in lol. Thankyou for all that. How can I get them to give me higher dose of levo. Would that solve all the above
Ok yes test was at 9am last dose of levo was 12hours before. No food and only water from 12 hours previous. Been on levo for nearly year and half
After next dose increase to 100mcg
Getting FULL Thyroid And vitamin testing done via Medichecks or Blue horizon
Only do test early Monday or Tuesday morning and then post back via tracked postal service
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
This gives 24 hours between last dose levothyroxine and test for accurate Ft4 results
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
Make an appointment with GP
Print out guidelines on dose by weight
And links that show TSH should always be under 2
Be ready to push for dose increase in levothyroxine, as a “trial” if necessary
Many GP’s are clueless on how to manage patients on levothyroxine
Meanwhile working on improving low vitamin levels will help improve symptoms
Find out if thyroid antibodies were high
If TPO antibodies weren’t high, NHS refuses to test TG antibodies
So will need to include in your private testing next time
Doctors here only doing phone appointments
So can be harder to get point across
You can send email/letter before phone appointment
Others have had success doing this
They then have to justify why they are NOT following guidelines on dose by weight, keeping TSH below 2 etc
Ok Thankyou so much for your advice. I will ring for an appount ment now might get one in about 5 days
I have got an appointment for satirday morning. Would it be best I download all the attatchments you have sent me and email them to the doctors the day before
I would write an email
Include tick list of hypothyroid symptoms
Include links to relevant articles
And copy and paste relevant sections into your letter
Keep letter short
Hi please can you tell me what I google to gain the information for guidelines please
In my previous replies
Here guidelines on TSH
TSH should be under 2 as an absolute maximum when on levothyroxine
gponline.com/endocrinology-...
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
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
Also to test vitamin D, folate, B12 and ferritin
sps.nhs.uk/wp-content/uploa...
Aim is to bring a TSH under 2.5
UK guidance suggests aiming for a TSH of 0.5–2.5
guidelines on dose levothyroxine by weight
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
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.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
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.
BMJ also clear on dose required
Hi sorry me message sounds rood. I did not mean it as you have scammed me lol. I must learn to message clearer.
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