Low b12 and ferritin, with normal tsh and T4 (5... - Thyroid UK

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Low b12 and ferritin, with normal tsh and T4 (50mg daily Levo )

Alejandrita17 profile image
24 Replies

Hi !

I have a doubt about Levo: if being hypo causes low vitamin levels because of the diminished stomach acid... shouldn't this problem be resolved once you start taking your Levo and thus being "normal" again? I have normal tsh and t4 (i'm on 50mg) and struggle with low b12 and ferritin (just 8!!!!).

Thanks a Lot!!!

Alexandra

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24 Replies
Jazzw profile image
Jazzw

As we often say around here, “normal” is an opinion. :) And there can be a big difference between “normal” and “optimal”. Given you’re still on 50mcg levothyroxine, which is only a starter dose and not a dosage you should have been left on... I’d wager that you’re still undermedicated. Your results may well be in the “normal” range but they’re almost certainly not optimal.

When optimally medicated, the stomach absorption issues do tend to resolve but it can take a long time to undo the damage done by (1) being left undiagnosed for a long period of time and (2) being left undermedicated for a long period of time.

Alejandrita17 profile image
Alejandrita17 in reply toJazzw

Thanks a Lot!!

Localhero profile image
Localhero

It might help us answer your question if you post your most recent blood test results, with ranges.

Unfortunately, “normal” or in range is rarely optimal. Also you’ve been stuck on a starter dose of Levothyroxine after years of hypothyroidism so it’s going to take time for symptoms to resolve (and 50mcg is not likely to be helping. In fact it may be making things worse).

Alejandrita17 profile image
Alejandrita17 in reply toLocalhero

Thanks!

My last blood test shows:

Tsh :3,85

T4: 1,28 (0,7-1,7

B12: 252 (200-900)

Ferritin: 8 (15-300)

I was left untreated for 3 years (after a De Quervain Thyroiditis) because they said that my tsh was under 10 (sometimes 7, sometimes 6, sometimes 9). Then I got pissed off and DEMANDED to be treated. They gave me 50 MG daily, 4 months ago. But my vitamin levels are still low, though tsh and t4 improved.

Jazzw profile image
Jazzw in reply toAlejandrita17

Oh dear. They really should have increased your dose after seeing those results! Many people who are treated with levothyroxine don’t start to see results from their treatment until TSH falls below 2.0 (and for many of us, below 1.0).

Do you think your doctor would be amenable if you were to ask for an increase to 75mcg daily? Those blood tests suggest that’s what should happen next (and you may even need a further increase a couple of months later on).

Re your ferritin and B12, are you supplementing at all?

Alejandrita17 profile image
Alejandrita17 in reply toJazzw

No, i'm not supplementing. They said 250 b12 is still in range so I don't need to take meds for that. As for the ferritin, they said it might not be because of my hypo (since tsh is now in "range"), so they sent me other blood tests to see if i'm celiac (which i'm sure i'm not).

SlowDragon profile image
SlowDragonAdministrator in reply toAlejandrita17

NHS only tests and treats deficiencies

Essential to regularly test Vitamin D and folate too

B12 under 500 is too low for someone who is on levothyroxine

Before you start improving low B12 you need folate levels tested

Assuming low folate too

supplementing 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 will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

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...

Low B12 symptoms

b12deficiency.info/signs-an...

With B12 result below 500, recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

Chicken26 profile image
Chicken26 in reply toSlowDragon

my endo gives super B injections...i wld be terrible without them...i have celiac so do not absorb so i get my injection twice a month....

SlowDragon profile image
SlowDragonAdministrator in reply toAlejandrita17

Dose levothyroxine should be increased slowly upwards in 25mcg steps (retested 6-8 weeks after each dose increase) until on roughly 1.6mcg per kilo of your weight

Roughly how much do you weigh in kilo

All four vitamins need to be optimal as well

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...who will prescribe T3

NHS and Private

tukadmin@thyroiduk.org

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be significantly under one.

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

jsy_girl profile image
jsy_girl in reply toAlejandrita17

Well done for advocating for yourself and getting treatment. Did you get your ft3 level tested? Looks like you need a dose increase. TSH better under 2 or more likely under 1.

I sympathise with the ferritin. Mine is Low but not that low and I really struggle to get an increase.

Your b12 is woefully low. Have you been tested for pernicious anaemia?

Alejandrita17 profile image
Alejandrita17 in reply tojsy_girl

Thanks!As for the T3, my Endo says it is not neccesary to test, because T3 may be influenced by other factors in the body, so it is not a "reliable" parameter to see if meds are working properly. She said the only reliable measure is TSH.

jsy_girl profile image
jsy_girl in reply toAlejandrita17

Oh I seee one of those terrible doctors who try to test the thyroid by using a pituitary hormone and ignore the actual thyroid hormones. Makes sense. Not.

Alejandrita17 profile image
Alejandrita17 in reply tojsy_girl

Seems so :-((((

Jazzw profile image
Jazzw in reply toAlejandrita17

Oh dear (again), it sounds like you have an Endo who has no business using the title “endocrinologist”—they’re alarmingly common these days. Often they’re experts on diabetes—not endocrinology as a whole.

Terrifying to think about how many other patients your endocrinologist is keeping unwell, if they believe that a TSH of over 3 in a patient treated with levothyroxine is ok. :(

However. Your GP will most likely be able to help with a 25mcg raise in levothyroxine—there’s nothing controversial about that given you still have symptoms and there’s plenty of wriggle room within the reference range. You may also be able to persuade your GP to do the test for pernicious anaemia. I’m not sure that I’d be in a hurry to see that Endo again if he/she was mine!

JAmanda profile image
JAmanda in reply toAlejandrita17

I'd get tested privately to see your T3 and t4 levels and see where they are in the range. I think the aim of treatment for hypothyroidism is to reduce your symptoms without going over the ranges - and by that time your tsh will likely be much lower.

Start with full tests then you'll know where you are and can post results here for good advice.

Ask for an increase to help with symptoms but get tests done before you take the new dose (75).

Take tests first thing before meds and some days away from vits with biotin in.

SlowDragon profile image
SlowDragonAdministrator

You clearly need new GP.....one who can actually read NHS guidelines

Anyone with thyroid symptoms and TSH over 5 should be prescribed levothyroxine as trial

See flow chart on top of page 2

gp-update.co.uk/Latest-Upda...

50mcg levothyroxine is only a STARTER Dose

Bloods should be retested 6-8 weeks after each dose change. Dose is increased slowly upwards in 25mcg steps until TSH is ALWAYS under 2

Most people when adequately treated will have TSH well under one

Your vitamins are dire BECAUSE you are extremely under medicated and on totally inadequate dose levothyroxine

How much do you weigh in kilo approx

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Alejandrita17 profile image
Alejandrita17

Thanks SlowDragon! I too think that i'm being undertreated. My case is a little bit strange since I don't have Hashimoto's (I don't have antibodies in my blood). My problem started after an acute viral Thyroiditis (De Quervain), I could not recover from that episode. :-(

I Will DEMAND that she increases Levo till My tsh is under 2.

Thanks A LOT for your advice!

SlowDragon profile image
SlowDragonAdministrator in reply toAlejandrita17

Doesn’t matter what the cause of hypothyroidism is

Once you start on levothyroxine, feedback mechanism is disrupted

That’s why virtually every person needs dose levothyroxine based on guidelines of 1.6mcg per kilo of your weight

Some need more ....rare to need less

Dose has to increase slowly in 25mcg steps

Which brand of levothyroxine are you currently taking

SlowDragon profile image
SlowDragonAdministrator

You don’t know if you need T3

First step is to get levothyroxine dose slowly increased upwards in 25mcg steps until on guideline dose

All four vitamins need regular testing and supplementing to bring to optimal

Vitamin levels are currently terrible because you are so under treated on far too low dose levothyroxine

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate at least half way through range

B12 at least over 500

Ferritin is really dire

What’s GP doing, they need to urgently do full iron panel test for anaemia

Likely to need iron supplements, or iron an infusion

humanbean is iron and ferritin expert she may pop along

Are you vegetarian or vegan

Low iron and/or low ferritin frequently linked to hair loss

Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin ask for full iron panel testing for Anaemia

Look at increasing iron rich foods in diet

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

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

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.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first

Post discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Why low ferritin needs improving

healthunlocked.com/thyroidu...

Alejandrita17 profile image
Alejandrita17

I'm not a vegetarian nor a vegan. My total cell recout is ok.

Iron panel also ok but on the minimun level:

Transferrin (iron) : 254 (245-420)

I don't have heavy periods, no blood on my feces either.

I blame it on my thyroid :-((

Karenk13 profile image
Karenk13

Are you vegan ot vegetarian? These low levels could also be diet related. I also have very low Ferritin which is caused it seems mostly by my vegetarian diet and fact I dont absorb iron very well combined. Has the GP put you on an iron supplement now ? Also if you are vegan that would contribute to low B12 as it is hard to get in a vegan diet

EleanorAnne24 profile image
EleanorAnne24

Hello Alexandra

I am 69 and for three years my blood tests have been ignored by my previous GP. I have had low ferritin levels since 2016!

Having suffered several falls and sleeping all day, difficulty breathing and so on, my new GP picked up iron anaemia. like you my Ferritin score was 8!

I had the camera 'checks' by mouth and anus which showed no internal bleeding and my GP wasted no time in referring me to the local Haematology department where I have received iron infusions. It seems that for some reason I am not absorbing iron in the gut. Iron tablets achieved nothing following investigative procedures.

I also take 150mg Levothyroxine daily and have 3 x monthly B12 injections.

Ferritin levels are monitored through blood tests of course and it is important to say the iron infusion is a simple procedure and each infusion's effects are noticed about 7 days later.

Push hard, you may have a 'poor' GP as I did so find another. Thank goodness my new one is on the ball.

Alejandrita17 profile image
Alejandrita17 in reply toEleanorAnne24

Now, I have recently read that low iron absorption could also be related to too much Candida Albicanis in our guts. Maybe if we cut on sugar and carbohidrates we can get better....who knows?

EleanorAnne24 profile image
EleanorAnne24 in reply toAlejandrita17

I haven't come across that view before. My daughter who is a GP says it is largely due to poor absorption in the gut. It has come with age seemingly in my case. Iron replacement tablets were futile. Looks like my way forward will be monitoring through blood tests and Iron infusions. Good luck.

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