I have been taking levothyroxine since the middle of October 2019 dosage 25mg every other day until the end of March when I started to take it each day.
I know the vit d is a bit low I take 800iu daily
Also folate low will phone the dr's on Tuesday
I am a little concerned that the B12 is high, it was high
October 2019 1342, not supplementing.
( Blood tests blue horizon)
Advice much appreciated & Thank you for reading my post.
Written by
Harlech
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Ferritin is OK, it's recommended to be half way through range so that would be 82 with that range.
Magnesium is an unreliable test. About 99% of magnesium is stored in bone, muscles and soft tissues, leaving about 1% in the blood. So testing what's in the blood isn't giving an accurate picture of our magnesium status.
Cortisol looks OK.
Tsh. 2.86. (0.27 - 4.20)
T4 Total. 104.0. ( 66 - 181)
FREE T4. 16.6. (12.0. - 22.0)
FREE T3. 4.95. (3.1 - 6.8)
The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their ranges if that is where you feel well. Your TSH is on the high side for someone on Levo, your FT4 is 46% through it's range and your FT3 is 50% through range. They are nicely balanced but on the low side and suggest you need an increase in your dose of Levo.
Thyroid antibodies are nice and low so don't suggest autoimmune thyroid disease (Hashimot's) with those results.
Vitamin D. 64. (50 - 175)
I know the vit d is a bit low I take 800iu daily
The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L.
800iu is barely a maintenance dose for someone who already has a good level.
To reach the recommended level from your current level, based on the Vit D Council's suggestions you could supplement with 3,500-4,000iu D3 daily.
Retest after 3 months.
Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3 as recommended by the Vit D Council.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
◦Serum folate of less than 7 nanomol/L (3 micrograms/L) is used as a guide to indicate folate deficiency.
◦However, there is an indeterminate zone with folate levels of 7–10 nanomol/L (3–4.5 micrograms/L), so low folate should be interpreted as suggestive of deficiency and not diagnostic.
Your GP may or may not prescribe folic acid. Methylfolate is the recommended form, folic acid is synthetic and has to be coverted by the body into folate.
Thank you for your reply. I am going to try and speak to a Dr. on Tuesday about the folate I was adviced to do so from the dr's comments ref. bluehorizon, also about increase in levo., which I don't think I will get very far.
Ref. to folate I have in the past brought it myself that was methylfolate, I wasn't aware of tropical magnesium, I will have look.
Ref. to B12 checked year 2018 it was high at 735 then, I don't eat that much meat, eggs not that often, fish I don't like.
Thyroxine Replacement Therapy in Primary Hypothyroidism
TSH Level .................. This Indicates
0.2 - 2.0 miu/L .......... Sufficient Replacement
> 2.0 miu/L ............ Likely under Replacement
and the following by Dr Toft, past president of the British Thyroid Association and leading endocrinologist, who states in Pulse Magazine (the professional magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Thank you for sending me the information. I brought Dr anthony toft book in 2011 so think it's first 1. Unfortunately the dr's here will not listen, lab's only seem to do tsh. I have changed dr's surgeries 3 times, the 1 I am at now only treated me with gritted teeth 25 mg every other day she wouldn't increase it until I seen endrorinlogist 5 month later, he was of no use wondered why I had gone, her referral letter contained no information of symptoms or blue horizon blood tests luckily I had taken my own paperwork, the answer from him was a gp can deal with this. When I spoke to my gp about it 10days later and told her what the endrorinlogist had said, her reply was I only what him to agree that I could have levo. I have already asked about an increase and been refused until I had more blood tests, unfortunately due to covid19 I had been unable to get them done, until the other week as my surgery wouldn't allow private blood tests taken there. So now I wait until Tuesday.
My nephew who is being treated for hypothyroidism cannot believe the issues I have had and are having with dr's., I have read there are a lot of other people struggling too.
Hi. Update just had telephone conversation with a Dr. ref to high b12 levels, thyriod tsh being 2.86, & folate low, answer was everything is OK. He mentioned with age / older, things happen & I have to accept it, at this moment I am fuming, I have been up fair bit though out the night with severe leg cramps.
Increase your Vit D as explained above, that's easy enough, don't forget the cofactors.
For low folate you can self supplement with a methyfolate supplement.
B12 I think needs more investigation on your part. As we get older it's quite common for B12 to be low, it's common for older people to need B12 injections for deficiency so to have a high B12 when you're in the older age group is unusual. Read up about it, I gave you one link above. If you have any concerns go back with evidence.
As for your TSH, can you see another doctor, you have evidence in those articles that you are undermedicated, and I can't see why the Leeds Hospital evidence can be dismissed when it's an NHS hospital.
Suggest you try taking a daily good quality vitamin B complex......if any B vitamins are low (eg B1 thiamine often low when hypothyroid) then you can have functional B12 deficiency and this can cause apparently high B12
Vitamin B complex one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and may help reduce B12 levels
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)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
See different GP re getting dose levothyroxine increased
guidelines on dose levothyroxine by weight
Even if we 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 on 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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Hi. I stopped taking igennus super b complex, in July 2018 due to blue horizon showing b12 over range but no that much(166) & folate was just low at (8.38). I do have some b12 , Methylfolate, & better you 3000 vit D the latter I have already started taking & will now take B complex & stop the folate,
Strange thing is & before 2018 think possible 2016 I had to have a course of B12 injections, I could understand being low & now for 3yrs high.
I will order some topical magnesium, could do with it now my legs still ache.
Have recieved Dionne email.
Ref to vit D my level 64. (50 175). using3000iu spray daily how long for 1 month?
Ref. doctors it's phone calls, I prefer a face conversation, but it's circumstances at the moment .
I wonder whether a private gp would be better,? that's if they are working at moment.
Thank you all your replies & information very much appreciated
Hello, is don't think I can help, I have been on Levo for six years all I can say is I take 125 one day 100 the next all alternatively for the first three years I took them at night, now I take in the morning I also take vitD and statins 20mg I don't know if f this is of use, I hope you get sorted x
Hi. My update I have just posted up about my morning conversation with a gp, answer I got everything OK, will not increase levo tsh 2.86, high b12 no problem folate OK. He mentioned because I am now older I have to accept things, hence being housebound.
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...
tukadmin@thyroiduk.org
guidelines on dose levothyroxine by weight
Even if we 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 on 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.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
I could email Dionne again I did have list, but cannot remember how long ago, all I know is at that time they were to far away & due to issues I have I have to arrange someone to be with me were appointed are concerned , I not only suffer night time cramps which last night I spent more time out of bed than sleeping, I suffer with eye issue keratitis it can wake me up at anytime during the night my eye is swollen inflamed badly & a feeling of dozen pins being struck in the eyeball I am in agony it's due to cornea lining drying out when this happens I have to use a lot more ointment & wear eye patch to force the eye shut & this can last 12hrs before I can remove the patch. Ref to endrorinlogist If I remember correctly it would mean stopping over night & there is no one who could do that. (I live on my own, my husband died in 2003.)
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