B12 not responsible for my symptoms last week+n... - Thyroid UK

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B12 not responsible for my symptoms last week+no hyperthyroidism defected after all.

Seahorse76 profile image
•16 Replies

I got the results from the blood test and ECG done last Friday. My ECG was normal 😊 and so was my tsh: 1.41 mU/L.

Because the tsh is in the range, the lab cancelled the T4 unfortunately ( and no antibodies check either), and I have no other way around at this time to change that. But I believe I am getting better.

The doctor re-tested my serum B12 although I mentioned I took B12 supplements last week. My B12 was at 344 pmol/L 3 weeks ago and is now at 374pmol/L so I suppose that’s good.

I was in poor shape last week due to severe reaction to Buspar medication ( for anxiety), and wasn’t able to advocate for myself as much as I wanted to. I don’t give up though and will try again.

Thanks to the support of several members of the forum ( GreyGoose, Marz, SlowDragon), I am better prepared for the next visit.

I will order to have the folate test done, as well as check my iron+ferritin and see if they agree to do the test to check the active B12 too.

Thank you so much again to everyone who read and had helped me. I feel more empowered in my road to healing.

Aline

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16 Replies
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MissGrace profile image
MissGrace

I’m glad you feel more confident. This is such a great forum for information and encouragement.

It concerns me more and more about labs cancelling crucial tests like T4 and T3 because of the great god TSH. This is not the first time it has been mentioned on this forum and I’m sure it won’t be the last.

The fact that non-clinicians who don’t even know anything the patient (other than the flaming TSH) can do this is appalling and dangerous in my opinion.

It’s a pity we can’t insist that our blood ISN’T tested for TSH if we don’t need it to be and FT4 and FT3 are tested instead. For a lot of us, testing TSH is a waste of NHS money and leads to nothing but grief as it causes medication disputes.

Today’s thyroid grumble over! Grrrr!!! 🤸🏿‍♀️🥛

Seahorse76 profile image
Seahorse76 in reply to MissGrace

Yes it saddens me, as well and it is frankly upsetting as tsh alone isn’t reliable... I hope it changes soon but unsure about that... I think my last resource if I do experience issues that could be thyroid-related, will be to go see a naturopath and do bloodwork in a different lab.

SlowDragon profile image
SlowDragonAdministrator

It virtually impossible to get active B12 test on NHS....unless you go to St Thomas hospital in London

Recommend getting full Thyroid and vitamin testing privately as next step

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Your previous results of high TG antibodies could be Hashimoto's

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Cheapest option for just TSH, FT4 and FT3 ÂŁ29

(via NHS private service )

monitormyhealth.org.uk/thyr...

Thyroid plus vitamins and antibodies

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Come back with new post once you get results

Anxiety is common hypothyroid symptom especially with Hashimoto's

Trying strictly gluten free diet to see if helps recommended too

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under ÂŁ20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet




(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Seahorse76 profile image
Seahorse76 in reply to SlowDragon

Thank you so much SlowDragon, you are such a great help 💛. I am from Canada but your advices are universal and guide me in my quest for good health. I did stop eating gluten completely about 4 years ago, as I suffered severe bloating and other unpleasant digestive symptoms. I was working in a bakery at the time...

I will try to have all of those tests done next time I see a doctor. I am currently on a wait list to find a family doctor and hopefully I will be lucky in the next 3 months.

Wishing you a wonderful day!

SlowDragon profile image
SlowDragonAdministrator in reply to Seahorse76

So the fact you are gluten intolerant and have raised TG antibodies makes Hashimoto's very likely

Essential to regularly test vitamin D, folate, B12 and ferritin

B12 is still low

Presumably you know this site

thyroidpatients.ca/home/

Seahorse76 profile image
Seahorse76 in reply to SlowDragon

That’s really good to know concerning Hashimoto’s.

I only discovered the website you mentioned very recently, thank you for giving me such valuable information. I had actually forgotten about this website 😅.

I only did test my vitamin d once ( and had to pay $75.00 for it unfortunately as it’s not covered by MSP anymore.)

I am taking a d supplement at this time, a thousand units/day but will re-test vitamin d. I was at 83 last time ( in June). However, it’s probably not 83 anymore with all the grey weather we have been having.

I think I do need more B12 yes, and am taking 1000mcg cyanocobalamin/day. I swear I can think more clearly since I started supplementing with B12.

Also, 9 months ago, my ferritin was at 44 and so I was told to supplement with iron. I bought a supplement that contained iron, as well as 400mg folate and 1000 mcg of b12 ( the methyl form).

Well, 3 months later, as I recheck my ferritin, it is now only 25 while the serum b12 is above range, at 732 while the max is supposed to be 655 pmol/L. I wonder if those results have any significance? I did ask the doctor on Friday but she couldn’t give me an answer other than “it’s strange”.

SlowDragon profile image
SlowDragonAdministrator in reply to Seahorse76

Vitamin D mouth spray by Better You is good as avoids poor gut function. Can you buy this online in Canada

It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Personally I need 3000iu daily plus as much Sun as I can get (similar weather to you here in UK)

Ferritin

Eating liver or liver pate once a week, plus other iron rich foods like black pudding, prawns, spinach, pumpkin seeds and dark chocolate, plus daily vitamin C can help improve iron absorption

Links about iron and ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

drhedberg.com/ferritin-hypo...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

B12 and folate....we usually recommend a good quality daily vitamin B complex, one with folate in not folic acid

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 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

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Seahorse76 profile image
Seahorse76 in reply to SlowDragon

SlowDragon, I cannot thank you enough for sharing so much information and knowledge with me. I wish doctors knew as much concerning Hashimoto and B12 deficiency as you.

Yes apparently I can find vitamin D in spray here, under a different brand: Jamieson. I didn’t even know it existed!

I will be on the lookout for a multivitamin with folate in it. Although I feel a bit nervous about adding a b complex to my b12 dose but I don’t think it will hurt.

I really don’t mind eating increasing my ferritin by eating more dark chocolate, especially since it’s good for my health 😉.

Have a wonderful evening 💛.

SlowDragon profile image
SlowDragonAdministrator in reply to Seahorse76

You want a vitamin B complex

Not a multivitamin

Seahorse76 profile image
Seahorse76 in reply to SlowDragon

I will order a good b complex today! Thank you so much.

Have a lovely afternoon 😊

MrsBeasley profile image
MrsBeasley

You mention MSP so I assume you’re in BC like me. You cannot get folate tested here, it doesn’t exist as a test anymore. As for vitamin D, do you have an Endo? If an Endo orders the test it’s free, if a GP orders it, it costs you $75.

The way around having the feee T3 and T4 cancelled is to have your doctor write a comment in the comments section near the top of the life labs form. My doctor writes in there and they never cancel them at the lab. It is standard practice not to test the Ts when the TSH is in range, but if you actually look at the report from life labs it says on it something like “sample will be stored for 7 days for further testing if needed” so your doc can request they complete that. Honestly it’s just easier to get a new requisition and new blood draw with the instructions in the comments section not to cancel free T3 and T4.

I use vitamin D drops, cheap at Costco. Much easier to absorb than pills. Each drop is 1000 iu and my Endo has me taking 3 drops a day.

Seahorse76 profile image
Seahorse76 in reply to MrsBeasley

Sorry for a second message, but thanks to your message, I decided to see all all the free T4 results I have had since 2014 (3 total). I realized by looking at my free T4 results from 2014-2017 that my free T4 has indeed decreased : from 18 in 2014 to 17 in 2016 and then 12.1 in 2017 for a range 10.6 to 19.7 pmol/L... So, I will bring my graph to the doctor when I go in case they gave me a hard time. It could certainly explains some symptoms.

Seahorse76 profile image
Seahorse76

Hi MrsBeasley, thank you so much for your message 💛. Yes, you guessed it right, I live in Vancouver! Where are you in BC if I may ask?

I didn’t know that the folate test didn’t exist, thank you for letting me know. I asked to have an endo a couple of years ago and the doctor told me it wasn’t possible because of my tsh being fine, and that I would have to prove that I have Hashimoto and request a referral then but wouldn’t be guaranteed... So I kind of let it go as I found it discouraging.

I had a thyroid ultrasound in 2017 and the thyroid apparently looked normal (or so they told me), to the exception of one tiny nodule that I have had for as long as 2009. I also had radioactive iodine scan at the same time, and it apparently was fine too but I never got to see those results in person.

Thank you too for explaining how I can get to have the T3 and T4 tested as I was worried I wouldn’t be able to get checked anymore. I will try to go see a doctor this week. I am so grateful, I feel close to crying tears of joy. It has been a stressful journey.

Oh and I will get vitamin d drops too 😊

Have a wonderful day,

Aline

MrsBeasley profile image
MrsBeasley

I tried to post earlier on the app but it wouldn’t post. Trying again on the webpage.

I’m in Victoria! Hi neighbour 😊.

Your doctor is dumb, he won’t refer you to an Endo without proof of Hashimoto’s but you can’t have proof of that without the antibody tests!

I am lucky to have a super GP and Endo. I wasn’t doing well on Levo so the Endo has me on a trial of desiccated thyroid. My FT4 was 10.5 on 100 ug of Levo and it’s the same range as yours, probably because it’s life labs. I just changed 5 weeks ago, blood test is next week to check on it.

Good luck!

Seahorse76 profile image
Seahorse76 in reply to MrsBeasley

Oh my bad I meant I hope that your FT4 increases 😅and also that your tsh decreases.

Seahorse76 profile image
Seahorse76

Hello neighbor 😊, very glad to hear from you. I would love to visit the Island and Victoria some time. Hopefully next summer. Your message couldn’t have arrived at a better time!

I just came back from the same doctor as last week, and she re-ordered thyroid test for the free T4 plus a referral to an endocrinologist!!! I had to insist to show her my old lab tests from 2009, but in the end it worked.

I am beyond ecstatic as I have been trying to find an endo for 9 years now...

I seriously can’t thank you enough for giving me the strength to go back and request more testing. In the past I felt really self-conscious for going back if my tsh was fine. I started to think it was probably all in my head and that nothing could be done...

I went for the blood test on an empty stomach and will have the results soon...

That’s really awesome your endo was open for you to try natural dessicated thyroid, I heard it’s not easy to find an endo that is willing to do that. But I hope I am mistaken.

I hope that the dessicated thyroid works for you and that not only your tsh level decreases but especially that your symptoms disappear.

Have a wonderful day 🌈🌞

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