Could anyone please help in what to test/offer ... - Thyroid UK

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Could anyone please help in what to test/offer advice please? loading b12 6 wks ago, tsh 1.53. Freet4 12.2 & feeling ill & exhausted still?

Jo5454 profile image
15 Replies

HiTo try to cut long story short:) after shopping to subs instead of inj b12 during covid, neuro symptoms & very poor health returned finished loading dose of 6, 6 wks ago. Pins/needles etc worsened during jabs.

My tsh levels been up/down over years,highest 7.Not had thyroid medication.

Dr's recent test showed tsh to be lowest its been for yrs at 1.53, but Free T4 lower at 12.2, usually around 16.(9.0-19)

Cholesterol up from 3.9 to 5.3

Folate 7.1 (3--20.5)

HbA1c well below-fine.

Vit d 61nmol.

Ferritin 48 (told its fine but am taking iron anyway)

Potassium & sodium just into range.

Liver ok.

MCH above range & lymphocites below on test prior to inj. After starting lymphocites went back just into range.

Morning cortisol high on last check & magnesium raised Homocysteine 11

Omega 3 out of balance so taking good fish oil triglyceride supplement as already eat good sources reg.

I last checked antibodies October, Thyroglob 12.6, Peroxidase 16.5.

Aside from rechecking Thyroid antibodies again. Can anyone suggest anything else I need to look into please? The last 3 companies I used Iron profile all harmolysed, but really need to check that.

I'm feeling really exhausted,the sort that is hard to.push through,brain fog, cold, which feels like I've a temperature & shivery in mornings partic, achey, dry skin on face, underweight, unclear vision, nausea,to name a few:) so it's difficult to know whats linking to b12 & not getting enough of that or whether anything else is adding!

Any ideas most gratefully accepted please...

Oh yes, & FSH got accidentally tested and was way overange at 31, Dr says its likely linked to menopause...thank you!

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Curious123 profile image
Curious123

I found I initially had increased fatigue when I started B12 injections - I’d feel worse for a week or so then come good after each one. I needed more frequent injections (monthly). I also used up a lot of iron that first year post diagnosis, I think because the body was trying to rebuild the blood post deficiency. So your iron could be the issue as well as B12 plus I guess also the hormone changes from menopause which tend to cause fatigue.

Jo5454 profile image
Jo5454 in reply toCurious123

Thank you Curious123, yes guess I’m probably being too impatient! I def think you’re right about the iron. I’ve had very low ferritin in past and even when it’s the level it was on recent test, 48, when I’ve done iron profile tests it’s always shown I need to take iron due to high TIBC & saturation under range. Dr is doing 8 wk test for iron, folate, blood count after bank hol, so will see what that reads, then cont. with iron, and get onto complex, etc. I did ask to see if he’d do an iron profile, but it obv didn’t happen. I can have one done for £120, but just seeing which direction to put money towards at mo! Had been having pinprick ones, but they failed with all 3 companies last year, 2 attempts each time, yet other elements within test worked.

Awaiting appt to discuss frequency of inj. I was on monthly last time and even they ran out sooner, now put onto 3 monthly, but know with neuro symptoms that needs to be at least every 2. Many thanks…

Curious123 profile image
Curious123 in reply toJo5454

No worries. The haemolysed samples I struggled with for pin prick tests.the key is not squeezing the blood out your finger as it bursts the cells and also not shaking the sample vigorously as same issue. You could ask your GP to run an inflammatory marker like CRP as inflammation will falsely elevate ferritin as it is an acute phase reactant. Ferritin below 30 is iron deficiency despite what the lab ranges say.

Jo5454 profile image
Jo5454 in reply toCurious123

Thank you...yes I try hard not to do.the above with samples and the iron profile was included within other tests sometimes and the sample worked for other elements but not iron profile oddly! Thanks for tip about crackers, I'm actually due to recheck thyroid/vitd etc and crp is sometimes included. Yrs I tend to feel better when my ferritin is over nearer 90 I had low ferritin prior to b12 probs last time around, then once I started supplementing iron, my b12 level dropped even further. Its all linked isn't it.Thanks again...

SlowDragon profile image
SlowDragonAdministrator

Vitamin D is too low

How much vitamin D are you taking

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Jo5454 profile image
Jo5454 in reply toSlowDragon

Thank you very much for all of this SlowDragon. I seem to get more headaches when taking vit d, have tried various pure ones, but will give another go and at least it’s sunny now! My aches & health been worse in winter last couple yrs, so think it’s def an issue. I have had a gene show up in past that I don’t absorb it so well, if that counts for anything. I’ll work my way thro your info, thank you…

SlowDragon profile image
SlowDragonAdministrator in reply toJo5454

Try Vitamin D mouth spray, easier to absorb

Likely to need separate magnesium supplement…..best taken afternoon or evening…..at least 4 hours away from levothyroxine

Jo5454 profile image
Jo5454 in reply toSlowDragon

Thank you, think there was an ingredient in there I couldn’t take, but will relook. Do you think it’s ok to take magnesium if my magnesium blood test said slightly overange please?

I’m not on any thyroid meds, my tsh has been up to 6.3 at times, currently lower, but t4 is the lowest it’s been now at 12, so maybe I should retest to check t3 and antibodies do you think? Many thanks for your time…

SlowDragon profile image
SlowDragonAdministrator

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and may help improve B12 levels between injections too

Difference between folate and folic acid

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

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

Post discussing different B complex

healthunlocked.com/thyroidu...

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 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

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)

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

Jo5454 profile image
Jo5454 in reply toSlowDragon

Yes you’re right, I’ve been adding in some single b bits, but think a complex will be better. I was a bit concerned at taking lots of new things at once, but will just have to give them a try…like sound of small tablets or pouring out,thank you! I’ve refrained from taking any extra b12 just until I have this 8 wk blood test after injections next week, as know I have to try to get inj more frequently than 3 monthly, I was on monthly before and they ran out before month was up! Didn’t want extra b12 to go against that. Once past that, guess I can just get on with it all.

I usually take folic acid, have that gene that means I’m a medium methlator but on a recent homocysteine test which was bit higher than norm they said to be careful taking folic acid of you have a history of colorectal polyps, which I have, so bit safer to take methyl folate. I’ve had a polyp removed twice and awaiting to have it done again, so bit concerned? Do you know anything about that please?

Thank you again and I shall work my way through this…it’s great!

SlowDragon profile image
SlowDragonAdministrator in reply toJo5454

I’ve refrained from taking any extra b12 just until I have this 8 wk blood test after injections next week, as know I have to try to get inj more frequently than 3 monthly, I was on monthly before and they ran out before month was up!

3 months is purely arbitrary. You can request/politely insist on every 2 months

If still not frequent enough…..Request monthly

Many people self inject B12 if GP won’t do more frequently

SlowDragon profile image
SlowDragonAdministrator in reply toJo5454

colorectal polyps

Not heard of this

Suggests high homocysteine might be linked

ncbi.nlm.nih.gov/pmc/articl....

high homocysteine linked to low B12 and/or folate

healthline.com/health/homoc...

Jo5454 profile image
Jo5454 in reply toSlowDragon

Yes apparently there’s been some research the folic acid can turn them precancerous, I’m trying to find out more on that…thank you.

Jo5454 profile image
Jo5454

thank you, I’m going to printout guidelines as the pins needles/ weakness down one side were constant during loading dose & I’ve been having a loyptvof other neuro symptoms. I’ve been battling to keep eyes open a lot of time and feeling nauseous and really unwell, so really need to try more frequent than that! Thanks…

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