My doctor has recently increased my levothyroxine to 75mg after spending about 8 years on 25mg. They have increased it twice in 6 weeks. I also take 20mg of thybon henning tablets as T3 is the only thing that makes me feel awake. Please see my new blood results from last week, I can't seem to understand why my antibodies are so high right now.
Any advice to unscramble the below appreciated.
hs-CRP 1.00 <5.0 mg/L
Ferritin 56.5 13 - 150 ug/L
Thyroid Function
TSH 1.19 0.27 - 4.20 mIU/L
T4 Total L 45.5 66 - 181 nmol/L
Free T4 L 7.2 12.0 - 22.0 pmol/L
Free T3 5.43 3.1 - 6.8 pmol/L
Immunology
Anti-Thyroidperoxidase abs H 338 <34 kIU/L
Anti-Thyroglobulin Abs H 629 <115 kIU/L
Vitamins
Vitamin D (25 OH) 61 Deficient <30 nmol/L
Insufficient 30 - 50
Consider reducing dose >175
Vitamin B12 338 Deficient <145 pmol/L
Insufficient 145 - 300
Consider reducing dose >569
Serum Folate 14.00 8.83 - 60.8 nmol/L
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Jasc29
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Your antibodies are high because you have Hashimoto's and antibodies fluctuate. They're not the main problem, their job is to mop up after your immune system attacks the thyroid.
You do have problems with your nutrient levels though:
Ferritin 56.5 13 - 150 ug/L
Ferritin is recommended to be half way through range, so 82 with that range. You can help raise your ferritin level by eating liver regularly (max 200g per week due to it's high Vit A content), or liver pate or black pudding and other iron rich foods.
Vitamin D (25 OH) 61
Vit D is in the "Sufficiency" category but a long way from the level recommended by the Vit D Council/Vit D Society which is 100-150nmol/L.
The Vit D Council would suggest you take 3,500-4,000iu D3 daily then retest in
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.
Is this pmol/L or ng/L or pg/ml (the latter two are the same). Whichever, this is low. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Some people with a B12 level in the 300s have been found to need B12 injections so it would be worth checking for signs of B12 deficiency and if you have any then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia:
Folate is recommended to be at least half way through range so 35+ with that range. Eating folate rich foods can help, as can a good quality, bioavailable B Complex such as Thorne Basic B or Igennus Super B. This will also help raise your B12 level.
However, if you do have signs of B12 deficiency then it's important not to start the B Complex before further testing of B12 has been carried out and B12 injections or supplements have been started.
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
TSH 1.19 0.27 - 4.20 mIU/L
T4 Total L 45.5 66 - 181 nmol/L
Free T4 L 7.2 12.0 - 22.0 pmol/L
Free T3 5.43 3.1 - 6.8 pmol/L
You are undermedicated. When taking T3 one expects to see TSH low or suppressed and a lowish in range FT4. Your TSH is higher than expected, your FT4 is below range and your FT3 isn't too bad.
I would suggest increasing your Levo to bring your FT4 well into range (see what the current increase in dose achieves) which will also probably increase your FT3 as well. Where you need your FT4 level is individual to you. Some of us on combined hormone replacement need both FT4 and FT3 a fair way through range, some of us do OK with a lowish FT4 as long as FT3 is in the upper part of it's range.
Thanks SeasideSusie, that makes so much more sense than anything my doctor has ever really said. I'll add supplements one at a time and see how I get on there. I'll monitor my T3/TSH/FT4 in the next round of blood tests to see how the increase in Levo is working.
Your antibodies are high because you have Hashi's. This means that the level of antibody will fluctuate up and down - without you being able to do anything about it. If they go down, it doesn't mean the Hashi's is "getting better" - it doesn't get better - it just means the levels have dropped and will go up again later. Nothing to worry about - it's just how it is.
As far as the thyroid bloods are concerned, your free T4 is under range - but will hopefully go up now your levo has increased from a very low "starter" dose [that should probably have been increased years ago]. I'm not surprised you have added in some lio - which I assume is under a private prescription Your free T3 is 63% through range, which is respectable - and should also increase as the effect of more levo kicks in.
How do you feel? Is the GP planning on more blood tests after you have been on the higher level of levo for 8 weeks?
Thanks fushia-pink, I did know I have hashi's but I never really understood how the antibodies fluctuate. I was concerned as it's the highest number's i've had since keeping my blood test results. I do get Lio in a private prescription and taking that really changed my everyday life as it made me feel awake instead of a zombie. I'm feeling tired generally but that isn't a surprise! I will be having another round of blood tests in 6 weeks which will just be basic so I'll also get my own private version.
Think of the antibodies as being like a tide that comes in and goes out - it just happens; you can't do anything about it; it's just the way it is! It's not really worth re-testing antibodies once you have a diagnosis, because they're just doing their thing.
Sensible to get private lio, given that you have been dumped on a starter dose of levo ... some people are happy with jut or mostly taking lio and having a low free T4; others (like me) want both free T4 and free T3 to be nice and high to feel at our best. The important thing is to find your own "sweet spot" - and then keep to the level of medication which supports it. Private testing is also sensible given how feeble most NHS testing is
Utterly ludicrous that you were left on 25mcg levothyroxine for years
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.
As you are also taking T3 you are likely to need slightly less levothyroxine than guidelines....perhaps 25mcg less...perhaps 50mcg less
Your vitamin levels are all too low as left extremely 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 .
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, best not mentioned to GP or phlebotomist)
If/when also on T3 make sure to take last half or third of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Thanks SlowDragon, I did take my test first thing in the morning and I didn't have any Levo since the day before the test. Also I take my lio at night so that's at least 9-10 hours.
Many of us find it better to split T3 everyday into 3 smaller doses, every 8 hours.
.....though this doesn’t suit everyone.
It’s all very individual what suits each person
Outrageous that you were left of terribly inadequate dose of 25mcg levothyroxine.
our thyroid controls our metabolism
As an example....if, when perfectly healthy, your own thyroid made the equivalent of 125mcg levothyroxine....and this metabolism is controlled by pituitary sending messages - TSH (Thyroid stimulating hormone)
Then as your thyroid starts to fail (usually due to autoimmune thyroid disease) ....you might get diagnosed when your thyroid has reduced output to roughly equivalent of 75mcg levothyroxine
Pituitary has noticed there’s a drop in thyroid hormones in the blood....(that’s Ft4 and, most importantly, the active hormone Ft3) ....so to try to make more thyroid hormone ...pituitary sends out stronger message to thyroid - TSH rises up
When GP starts you on (standard starter dose of ) 50mcg ....initially you feel a bit better ....as you have 75mcg from your own thyroid and 50mcg levothyroxine
But (here’s the bit many GP’s don’t understand)....levothyroxine doesn’t “top up” your own thyroid output.....well it does very briefly....but the pituitary very soon “sees” the levothyroxine in the blood....and TSH starts to drop
So at the end of week 6 ....TSH has dropped a lot. Your thyroid takes a rest ....has a holiday
So at this point you are now only mainly using the 50mcg levothyroxine....which is actually a dose reduction down from managing on 75mcg from your own thyroid before you started on levothyroxine
So you start to feel worse .....and are ready for next 25mcg dose increase in levothyroxine
Modern thinking ....and New NICE guidelines suggests it might actually be better to start on higher dose .....but many medics just don’t read guidelines ....
and many patients can’t tolerate starting on more than 50mcg and need to increase slowly.
Starting on 50mcg and stepping dose up in 25mcg steps, retesting 6-8 weeks after each increase.
But we still very often need to increase up to full replacement dose of 1.6mcg levothyroxine per kilo
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.
That's definitely something my doctor will never understand, it's incredibly frustrating that gp's are given the responsibility of managing this condition when they are not properly informed and always refuse to allow me to see a specialist. Thanks for all your insight, it's making me learn an awful lot quickly.
Your TPO and TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
I do avoid gluten, and it's made a big difference to my energy levels. I can fell a massive heaviness almost a day or so after I've eaten any gluten so I've done my best to change my eating habits over the last couple of years. It's a lot to learn.
If you read the Chris Kresser link ....any time you eat gluten it takes several months to recover from it
It’s necessary to be completely gluten free. Avoid all cross contamination. No shared butter, jam, separate cutting board. Separate toaster for Gluten Free toast - or get a toaster bag from Coeliac UK or online to be able to toast G F toast in an ordinary toaster
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