I am new here, diagnosed underactive in 2019 & progressed via GP from 50 to 100mcg levothyroxine. GP seems to be guided by TSH alone. Stable for a year or so but over the last 3 months I have felt unwell. Main symptoms are swollen eyelids & irritated eyes (using drops to help) plus muscle pains in arms/shoulders & backs of legs. Had some headaches & sinus type pain too but could be seasonal, occasional joint pain - knees, fingers. Achilles very tight in the mornings. Energy levels fine, occasional night seats (post menopause).
Following this forum I have made an appointment with a private endo in October & started with Medichecks advanced thyroid blood test. Results as follows:-
CRP HS 1.1mg/l (R 0-5)
Ferritin 154ug/l (R13-150) **
Serum folate 3.7ug/l (R 2.9-14.5)
B12 active 154 pmol/l (R 25.1-165)
Vit D 79nmol/l (R50-200)
TSH 0.12 (R0.27-4.2)**
T3 5.3 (R3.1-6.8)
T4 20.6 (R 12-22)
Tglob 74 (R 0-115)
Tperoxidase 32.1 (R 0-34)
Above all done early am/fasting without morning dose of levo. No supplements at the moment.My GP has checked rheumatoid factors & seem OK.
Medichecks hinted I may be on too high a dose of levo & if not feeling well should maybe discuss reducing with the GP. GP has offered 100/75 on alternate days. I wonder if I could seek opinion here on reducing the levo & maybe increasing the vitamins (folate/Vit D)
I would very much appreciate your insights into these results. I had assumed root cause was Hashi's but puzzled by antibody results which are in normal range. I've been tested non coeliac & was thinking of going gluten free but now not so sure.
Many thanks for your time & thoughts
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Will_blue
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I didn’t fix my crazy hip and back pains til well over 6 on t3. So even though your numbers look pretty good it could be you need some t3. But hey that just my experience. I say ‘crazy’ as honestly my hips hurt at 16 different points - and no amount of mri’s showed much - as there was nothing to show.
Yes unfortunately most do which is why so many of us are unwell. TSH is useful for diagnosis but once on thyroid hormone replacement it isn't much use as it's not a thyroid hormone, it's a signal from the pituitary, the thyroid hormones are FT4 and FT3 and these tell us our thyroid status. Unfortunately doctors seem unaware of this.
I had assumed root cause was Hashi's but puzzled by antibody results which are in normal range.
The TPO result is so near the top of the range that you can't discount Hashi's. Antibodies fluctuate and another test you may very well be over range, or lower than now.
I've been tested non coeliac & was thinking of going gluten free but now not so sure.
You don't have to be coeliac, you can be gluten intolerant. It's worth a trial of maybe 3-6 months, if no difference then reintroduce gluten.
Medichecks hinted I may be on too high a dose of levo & if not feeling well should maybe discuss reducing with the GP. GP has offered 100/75 on alternate days. I wonder if I could seek opinion here on reducing the levo & maybe increasing the vitamins (folate/Vit D)
TSH 0.12 (R0.27-4.2)**
T3 5.3 (R3.1-6.8)
T4 20.6 (R 12-22)
The Medichecks doctor was just looking at TSH. Your FT4 is 86% through range and your FT3 is 59.46% through range so you're not overmedicated and no need to lower your dose of Levo is you feel well on 100mcg.
Ferritin 154ug/l (R13-150) **
B12 active 154 pmol/l (R 25.1-165)
Both ferritin and B12 are very good levels for someone not supplementing; however, ferritin may be higher than normal as it's an inflammation marker and Hashi's causes inflammation.
Serum folate 3.7ug/l (R 2.9-14.5)
This is very low.folate deficiency is when level is below 3ug/L; however, there is an indeterminate zone with folate levels of 3–4.5 micrograms/L so low folate should be interpreted as suggestive of deficiency but not diagnostic.
You could discuss this with your GP or you could supplement yourself.
Vit D 79nmol/l (R50-200)
The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L.
To reach the recommended level from your current level, you could supplement with 3,,000iu D3 daily. Retest after 3 months.
Once you've reached the recommended level then a maintenance dose will be needed 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. This can be done 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. You will have to buy these yourself.
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.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
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, and large doses of D3 can induce depletion of magnesium. 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.
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.
I am extremely grateful for your advice & have followed your recommendations on supplements. I am now taking methyl folate, D3/K2 & magnesium citrate - all Purolabs. I am also using Better You B12 spray daily.
I have rebooked Medichecks bloods to see effect in a month's time after 6-8 weeks on vitamins. I feel a lot better but still suffer with intermittent body aches. I have made an appt. with a Thyroid UK recommended consultant in October & these bloods will be in time for that appointment.
My question - Medichecks blurb says to stop any B12 for 2 weeks prior to bloods. I would like to stay on the supplement to see if it's the right dose. Does the B12 mess up the other thyroid results somehow - do you think it is essential to stop taking it? I have booked the advanced thyroid checks so covers TSH, T4, T3 antibodies & vitamins.
My question - Medichecks blurb says to stop any B12 for 2 weeks prior to bloods. I would like to stay on the supplement to see if it's the right dose. Does the B12 mess up the other thyroid results somehow - do you think it is essential to stop taking it?
I've never understood why they say that. They started adding that caution in around the time it was made known that biotin affects blood test results, B12 does not affect thyroid results but biotin can.
I was in contact with them at the time to try and clarify what advice to pass on to members.
I asked:
There seems to be some confusion about stopping B vitamins before blood tests.
A few months ago one of our members contacted you about Biotin and blood tests, and she shared the information you supplied with other members, the salient points being:
"They have confirmed that yes biotin can effect the thyroid test results. The medical team have also added that because biotin is an ingredient used in many lab hormone test kits this can interfere with the measurement of thyroid hormones. It does this in an inconsistent way, causing falsely elevated results from some labs, and falsely low results from others. We recommend stopping biotin for one week prior to blood tests."
So when asked for advice, we always pass on this information and suggest that members leave off their B Complex/Biotin supplements for a week before any tests.
We now have some members telling us that when they receive their instructions (not sure which kit they are referring to), it says to leave B12 off for one week but there is no information about leaving off Biotin. I regularly do Thyroid Monitoring test with you and I haven't noticed anything in the instructions about leaving off Biotin.
It's our understanding that to get a baseline B12 to know what our bodies are holding on to, then B12 should be left off for about 4 months, so I'm unsure if leaving B12 off for a week has any benefit.
and their reply was:
I have discussed your query with our medical director he has advised the below:
Biotin supplements.
Biotin can affect the results of any test which relies on antibodies to perform the measurement. It is wise to assume that any hormone or vitamin test will be affected, which means that the majority of our test panels can be affected by biotin supplements.
The issue with Biotin only affects people who take high dose biotin supplements. The manufacturers of the laboratory tests define this as 5000 mcg per day or more.
We are recommending people do not take high dose biotin supplements for 24 hours prior to having their blood drawn. If they are taking high dose biotin for medical reasons (e.g. multiple sclerosis) then a shorter washout period of 8 hours can be used.
Vitamin B12 supplements.
The answer to this depends upon what they are wanting to assess. To work out whether B12 supplements are meeting the body's requirements we recommend not taking supplements for one week prior to having their blood drawn.
If a customer wants to assess whether they have an underlying B12 deficiency then it can take months (and potentially up to two years) for levels to fall to their natural levels after stopping supplementation. In this instance we would not recommend.
I can also confirm this information will be displayed on our test instructions in the near future.
So really their information is conflicting and confusing. Originally they said stop taking biotin for a week, then said stop taking it for 24 hours. Originally they said stop B12 for one week, now they're saying stop taking it for 2 weeks.
I can't see how stopping B12 is helpful in knowing if the amount you take is the right dose for the level you want to achieve. If I was taking a B12 supplement to improve my level, I would continue taking it up to the day before the test, then continue after the test. In my opinion (and I am not medically trained so it's just my opinion) that tells you what the dose is achieving and whether or not you need to adjust the dose.
But as far as B12 affecting thyroid results, then no it doesn't.
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