Hello lovely, knowledgeable folks - belated 'Happy New Year' to you all!
After an increase of levothyroxine (LT) in November 2023 from 50 mcg/ day to 75 mcg/day, I had back-to-back tests on 02 Jan. (Medichecks - professional blood draw) and 03 Jan. (NHS), to see comparable results. Both tests were done following suggested protocol on here, i.e. ~09:00, ~24 hrs since taking LT, only water before test. My latest, updated spreadsheet is shown above.
Firstly - reassuringly, the Medichecks and NHS % through range values for TSH and FT4 are reasonably close, which gives a nice cross-validation of the results. [NOTE: there are NHS results from 25 Oct. 2023 that showed some, small improvements - I was still on 50 mcg/day at that stage, AND the test was not taken under optimal conditions, i.e. it was at 16:30, ~31 hrs since last LT, some intake but all liquid (water, tea & soup), blood was like treacle and wouldn't come out at the first attempt - I was just bruising under the skin, so the phlebotomist had to switch to the other arm! So I'm taking those values with a pinch of salt. The Oct. blood draw was for a prolactin measurement so I wasn't expecting them to do thyroid levels as well.]
Secondly - flippin' Medichecks has changed the lab that they use (used to be Innuvi, now Eurofins)... I only just noticed and had to go back and check all the ranges, update the ones that are different (there are several different ranges in the Ultimate Performance Test that I had, although the thyroid ones are the same), and recalculate the % through range *TUT*!
Thirdly - despite the LT increase to 75 mcg/day - which is close to my, theoretical, replacement dose by weight (I know it's not the numbers but how you feel that indicates correct replacement levels) - the increase has, apparently, had absolutely NO effect on my TSH, FT4, or FT3... if anything, things are very slightly worse compared to September last year. I am completely confused... where is the extra LT going... what's it doing??? BTW, I'm tiny (about 49 kg and 5 feet tall)... using the 1.6 x weight theory, my replacement dose should be about 79 mcg/day - so, not that far away from 75 mcg/day.
I have not had any real improvement in symptoms... still tired, still losing hair, still dry, sandpaper skin on face, still aching joints, still massive amounts of fizzing and tingling - particularly in left arm and hand, and the tinnitus is driving me mad.
In fact, despite assiduously taking Fe, vit. D + K2 (M7) spray, Mg, B12, and B-complex spray, the only thing that has changed in any positive manner is B12... which is now reported by Medichecks as over range (this is one of the ranges that has changed so I now no longer have an actual value - it's just reported as >150) and they've said stop supplementing. What's going on - any ideas?
Apart from B12, the other thing that's spiralling out of control is my prolactin level - it's astronomical: more than 4x the upper range value and increasing. The GP has requested a contrast-MRI, which is booked for 18 Jan., to look at my pituitary. Could it be my pituitary that's causing the apparent unchanging TSH, FT4, and FT3 levels... not sure how - just clutching at straws?
Thank you for reading through all that! As ever, any thoughts or input very much appreciated 🙏😊
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ERIC107
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Many thanks, as ever SlowDragon , for your very fast response!
Yes - all LT and vits taken as you described (LT on waking, vits p.m. and/or before bed), and yes, you are correct... already diagnosed with autoimmune thyroid disease/Ord's (no goitre).
I'm actually gluten-free but did that based on recommendations on here and didn't have any coeliac testing after the initial thyroid diagnosis. I am wondering about going back on "full gluten" and asking for a coeliac test per the NICE guidelines, as you've posted. I had an improvement in my gastro problems more recently (after some problems that I put down to TEVA LT and improved now I'm on a Wockhardt+Mercury combo) but I've had another bad bout of BIG gastro problems between Christmas and New Year while fully GF.
Thank you very much indeed for the link to the journal paper about prolactin and hypothyroid - very interesting!
How long before test did you stop vitamin B complex
Which B complex are you taking
In week before blood test, when you stop vitamin B complex, did you take a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500
Now your serum B12 is over 500 (or Active B12 level has reached 70), you should be able to reduce then stop the B12 and just carry on with the B Complex.
ferritin is very low
Are you vegetarian or vegan
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
B-complex spray (Better You - unfortunately, it had folic acid in it for folate but I thought I'd use it up before buying an alternative) - stopped a full 8 days prior to test. I read, in great detail, all instructions given on here, so I do try to do everything "by the book". 😊 Having said that... I did forgot to stop the B12 and only remembered the day before - which likely fed in to the high B12 reading *DOH*!
Ferritin and iron (Fe) both towards low end - although the NHS test in Sep. showed a somewhat higher Fe result: 61.9% through range, which is rather anomalous compared with all other previous readings (Jul. 2023 Medichecks had Fe at 39.5% and 29.37% this time).
Ahh - good to know about B12 prior to tests... for some reason I had lumped B12 in with biotin as a "stop" component.
I have paused the B12 for the moment. My dad has PA and I've had chronically low B12 in the past, so I tend to focus on keeping it higher, if possible. I think I'll try to track down the Igennus option you suggest 👍👍👍
Brilliant - thank you! I had actually bookmarked this paper and then completely forgotten about it... I'll give it a good read through in more detail.
All your help is VERY MUCH appreciated!
I'm dreading the possibility of having to try dairy-free... I LOVE cheese, and natural yoghurt for bio-cultures. The only good thing would be that it would finally force me to be vegan - something I've been thinking about for a loooooonnngggg time but the draw of lovely, lovely cheese keeps me hooked.
I make my own kefir, and its really good for gut health, plus as the grains feed on the lactose in the milk it means the finished product is very low in lactose, alternatively you can get water kefir grains, and use coconut water, that is totally dairy free.
Shop bought kefir has to be pasteurised by law, unfortunately this means many of the beneficial bacteria are killed off.
I think I remember reading you saying this - and at that time I made a mental note I need to grow a backbone and try doing some of my own fermented stuff... I'm a bit scared of trying things with *bacteria* (dun, dun, duuunnn) - I just feel like there's so much scope for things getting horribly out of hand 😊🤦♀️
I've been making my own kefir for years and it hasn't killed me yet 😆 I've never attempted sauerkraut as I dont really like it and Kombucha I think can have alcohol in it and I'm teetotal.
I use an old coffee glass jar and a muslin cloth. I used to use a kiln jar but I broke the lid and never replaced it.
I wash the jar out each time I strain the grains with hot soapy water, but I dont rinse the grains, you're just washing away the goodness. Just plonk them back in the clean jar, with some fresh whole milk and voila! your next batch is underway.
As good as the modern day, expensive probiotic supplements are, even they dont have as many strains of good bacteria as kefir.
Sounds simple enough... where did you get your kefir grains from? Is there a good place to get an initial batch to get started? I haven't got a NY's resolution... maybe this should be it - try doing some of my own fermenting, starting with kefir?
Also - when you say "[...] strain the grains with hot soapy water [...]" don't you get the taste of soap in the next batch?
I feel some research coming on... I like a new research topic, thank you! 😊
I've bought two sets of starter grains, one from Ebay, and one, this last one, from Amazon. I always check the reviews. They normally send you about a tea spoon size, they can take a few days to get established, especially in cold weather, unless you have a warm spot in your home.
Dont use metal implements on kefir as apparently it can damage the grains. I use a wooden chopstick to stir it with and a plastic sieve to strain them. You will get full instructions with the grains 😀.
They are very economical, I've been using the same grains for a couple of years, they also grow very rapidly so you can end up with too many. In which case you can store some in a little milk in the fridge or give them away.
I'm a lifelong veggie and quite strict really, no eggs, honey, gelatin. But cheese, especially cheddar is the Devil's food and seriously addictive. I'm sure I would be vegan by now if it wasnt for cheddar.
Yep - I'm strictly no gelatine too... nightmare with the HRT progesterone capsules (squeeze contents onto tongue) - but you're doing better than me as I very occasionally have a bit of honey (none in the house, but have some if it's offered) and I do eat eggs for their protein levels, with a horrendous pang or remorse due to the potential for life.
I'm lucky I really dont like eggs, nasty rubbery things 😆. So its a taste as well as an ethical thing. I've never eaten meat or fish, I've been veggie since birth, even though my family ate the usual meat. I've obviously never missed it. Apparently it made me sick as a baby. I was doing my bit for the environment even then 🤣🤣
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New results - grateful for any input
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Medichecks results.
