Hi again 👋! I posted about 4 weeks ago with my Blue Horizons test results but, since then, have had a GP appointment (with 2 trainees and GP supervision) and further blood tests, including antibody ones for pernicious anaemia. I never had a call from the GP with the test results, so looked them up through my medical record on Patient Access. The results are:
Intrinsic Factor and Gastric Parietal Cell antibodies: both marked ‘normal - no action required’
Folate 9.8 (3.9-20) ug/l
Ferritin 71 (13-150) ug/l
Serum B12 240 (197-771) ng/l
Serum Vit D 104 nmol/l (50-125)
All the above test results have been marked ‘normal - no action required’ by the GP.
For info, previous results from Blue Horizon test (with ratios I calculated) are:-
Magnesium, cortisol and CRP were all top/bottom of ranges.
For context, the reason why I went to the GP was because of the low active B12 result flagged by the Blue Horizons test.
Oh, and I’ve also done a test for Coeliac Disease (as suggested by SlowDragon in a reply to my previous post) and that’s come back negative.
I don’t know what the best way forward is now to get my B12 (and folate?) levels up, as I now think this may be contributing to why my FT4:FT3 conversion rate isn’t great, so any advice would be greatly appreciated.
Hope that all makes sense, and thank you in advance 😊
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In answer to your question about how do I feel, some days I feel like I have more energy than others but, on the whole, I usually feel quite tired, irritable and down to be honest. If I do too much on the days where I feel more energetic, I normally pay for it quite soon afterwards by feeling wiped out. It’s definitely got worse over the last couple of years (I was diagnosed in 2011), hence the reason for me doing all the blood tests at the moment.
In my previous post, SlowDragon thought that I might be able to increase my dose slightly (I’m currently on 75mcg), but I haven’t done this yet as was waiting for the results from the tests with the GP.
I’ve been on lots of diets in my attempts to shift some weight (without much success it has to be said), but have never tried gluten free in response to the hypothyroidism. I will trial it though going forwards, as it seems like lots of people on here have found it beneficial.
I never thought about taking more tests before maybe going down T3 route. Out of interest, how long did you leave it between each test?
Sorry to hear your struggling. This place is amazing and has helped me learn so much.
It's such a nightmare as you never know what is the root cause.
I was gluten free for a year before finding out my thyroid was "autoimmuned"
If you read some of SlowDragon posts they are so helpful and she explains how many AI hypo people cannot tolerate gluten. It makes we tired mainly if I have it accidentally. It is a total stop no cheat days.
As you have been on levo for years it is unlikely your thyroid is releasing extra thyroid hormones as it can do at the start - so testing every 6 to 8 weeks is not too bad.
If your testing for a levo/T4 dose it is about 3 months as you are only tweeking now and it is so slow.
Biotin can affect your blood results, It is in vitamin B complex's (B6 r B7 ) I forget. If on a high dose of biotin need to stop before tests as it messes up the results.
Much simpler with a bit more T4 than adding T3 as well. A dose increase from Doctor seems easiest root forward.
Thanks Sleepman and totally agree with you about how much help this site is. I’ve had so much helpful advice and support from here in the weeks since I joined, and for that I’m truly grateful to everyone.
SlowDragon posts on the benefits of going gluten free are amazing, and I’m definitely going to try it. Just thinking about it tonight has made me realise how much my diet relies on foods full of gluten, so it’s going to take a while to get my head round, but I’m determined to give it a go.
Thanks also for timings on blood tests, will note for future reference.
I find the sublingual B12 most effective something like Nature Provides and then after a couple of weeks add in a good B complex.... these are the best forms we have found
You are a poor converter but lets see if sorting your lower B12 will help
Thank you for the advice on sublingual B12 and then adding in a B complex, TiggerMe, will get on the case with ordering and keep you updated on how I’m feeling.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
I’ve been on lots of diets in my attempts to shift some weight (without much success it has to be said), but have never tried gluten free in response to the hypothyroidism. I will trial it though going forwards, as it seems like lots of people on here have found it beneficial
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
As test is negative you can now go on strictly gluten free diet
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
Thus can really help with weight
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Again, thank you so much for all the information, SlowDragon. I am definitely going to trial going strictly gluten free, as I do eat an awful lot of gluten containing foods, as well as drink beer, so sounds like it might do me the world of good to cut it out.
As you detail, I’ll do that first and see if I notice any improvement, and then give diary free a go too and see how that makes me feel. If any of it helps me with my weight, that’ll be a bonus, but my aim really at the moment is just do the best for myself that I can.
That’s a really helpful website, I shall be checking that out lots me thinks! And I like the sound of your favourite beer too, I’ll definitely be giving that a try. I have noticed that there’s a lot more GF beers being produced now, so that can only be a good thing for all us beer drinkers 👍.
Thanks again for the advice, SlowDragon, that really is so helpful.
I’ll follow all the steps and timescales you’ve outlined in this last email now. It all makes perfect sense, and am sure it’s going to make all the difference to my health going forwards.
For info, I don’t always get the same brands from the pharmacy I get my prescription from (seems to change every time I pick them up), but I have read advice you’ve given about this topic, and will be requesting that I do get the same ones every time from now on.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
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).
I’ve never had that one, but am happy to ask if I can try it, and to get my local pharmacy to stock it. At the moment, I always get given separate 50mcg and 25mcg tablets, so it would be nice just to have a 75mcg one!
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