New beginnings : Finally I have some blood... - Thyroid UK

Thyroid UK

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New beginnings

dandiliontilt profile image
11 Replies

Finally I have some blood results from 12th taken as you’ve recommended this is the outcome. Please, please advise.

TSH 0.8 miu/L(0.2 -5.5)

25-hydroxy vit D3 53.0nmol/L

Ferritin 37ug/L (10.0 -300.0

Vit B12. 169ng/L. (180.0 - 1000.0

Folate. 42u5. 3.4ug/L (4.0)

Still in physical pain and exhausted Have you any recommendations as to what I might do next

Thank you, in anticipation.

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dandiliontilt profile image
dandiliontilt
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11 Replies
jezebel69 profile image
jezebel69

Hi - I'm sure you'll get a reply from someone more knowledgeable than me (I can see where you might need supplements) but you don't say what medication you're taking.....if any

dandiliontilt profile image
dandiliontilt in reply to jezebel69

150mg Levothyroxine

Thank you

SlowDragon profile image
SlowDragonAdministrator

Members with B12/folate deficiency may comment

See also previous post here

healthunlocked.com/thyroidu...

Partner20 profile image
Partner20

I am not surprised that you feel unwell with those low levels of Vit.D and ferritin, plus B12 deficiency to boot. Your GP should definitely address the B12 issue, and possible iron issues, too. You will need to supplement with D3 yourself.

dandiliontilt profile image
dandiliontilt in reply to Partner20

I have a telephone appointment booked for Weds pm.

Do you know if there’s a ‘guide’ to what our levels should be as an indicator. I’m trying to gather as much info as I can to be confident in putting my point forward.

Thank you for your response Partner20

Partner20 profile image
Partner20

As your B12 is actually below range, there should be no question about your GP adressing this. The lowish ferritin could be discussed with your GP, in case they think a full iron panel or further/repeat testing is needed. Your Vit.D, is, although low, within range, so unfortunately it will be up to you to buy your own D3 supplement. The Vitamin D Council has advice, and there is a helpful Vit.D group on FB, too. Hope your appointment proves helpful.

dandiliontilt profile image
dandiliontilt in reply to Partner20

Thank you for advise, I am now and have been taking these supplements for about 2 weeks1mg B12 on waking

150g magnesium picolate (liq form) after breakfast

100ug D3. Ditto

100ug K2. Ditto

150mg levothyroxine. evening 10pm ‘ish’

At the moment I still need to nap/rest in the afternoons from fatigue.

My right hand side hip and leg are still very painful and heavy. My stealth pace hasn’t changed much yet and still resembles that of a robot at times.

Looking forward to seeing changes soon.

SlowDragon profile image
SlowDragonAdministrator

Presumably you are now getting B12 injections from GP?

How much vitamin D are you currently taking?

Are you also supplementing magnesium, daily vitamin B complex and selenium

Ferritin needs improving too but increased iron rich foods

Recommend getting new bloods done 2-3 months after adding last vitamin supplement

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

Serum B12 over 500

Active B12 over 70

Folate and ferritin at least half way through range

Always do all thyroid testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Always get same brand of levothyroxine

Come back with new post once you get results

humanbean profile image
humanbean

Ferritin 37ug/L (10.0 -300.0) Approx 9% of the way through the reference range

Optimal for many people in relation to ferritin is mid-range or a little bit higher i.e. something like 155 - 220 (approx), based on the reference range you've been given.

Have you started doing anything about improving your ferritin (iron stores) levels?

Being low in iron causes me tremendous pain from many parts of my body, so I pay for my own tests, interpret my own iron-related results, buy my own supplements, and decide my own dose. Having optimal iron and ferritin levels decreases my chest pain, cramp, restless legs, muscle pain, exhaustion, weakness, brain fog, and breathlessness. I'm physically stronger when my iron and ferritin are good.

There are traps for the unwary when trying to improve iron and ferritin - see this thread :

healthunlocked.com/thyroidu...

In the meantime you could try and improve your iron-related levels using food - people vary in how successful this is. See this website for some help :

dailyiron.net/

Good luck.

jsy_girl profile image
jsy_girl in reply to humanbean

Hi humanbean do you have any tips for working out your dose? Do you also support the viewpoint of supplementing alternate days for better absorption? I was prescribed ferograd from doctors but going to try iron bisglycinate Thorne tablets. Just wondering how many to take :)

humanbean profile image
humanbean in reply to jsy_girl

I've read about the alternate days method of supplementing iron. I found this (full) paper on the subject :

sci-hub.scihubtw.tw/10.1016...

and this link where the subject is discussed :

consultant360.com/story/iro...

A quote from the second link :

The researchers used radiolabeled ferrous sulfate to measure iron absorption. In study 1, cumulative fractional iron absorption was 16.3% for the consecutive-day group and 21.8% for the alternate-day group, while cumulative total iron absorption was 131.0 mg versus 175.3 mg, respectively. Hepcidin levels were higher in the consecutive-day group. All of these differences were statistically significant.

Study 1 involved supplementing iron over 14 days or 28 days. In each case the subjects were taking the same total amount of iron, just altering the dosing pattern. In the 14 day dosing the women absorbed 131.0 mg of iron, in the 28 day dosing they absorbed 175.3 mg of iron. A win for alternate day dosing, apparently.

But if the women in the consecutive day dosing group had continued supplementing and had absorbed iron at the same rate throughout the full 28 days, they would have absorbed 2 x 131mg = 262 mg of iron, whereas the alternate day dosing group only absorbed 175.3mg.

From the point of view of doctors alternate day dosing is 50% cheaper because they prescribe half the iron supplements over all, but in the end they will be either extending the time they have to prescribe or they will just cut women off when they are still deficient (as they do in many cases anyway, whatever the dosing pattern, because they hardly ever test iron and ferritin after prescribing iron and only care if results are in range rather than optimal). I suspect that cutting off prescribing is most likely to happen, because the doctors won't have thought about alternate day dosing as anything other than a money-saving exercise.

For someone with a severe iron deficiency that will take a long time to recover, traditional dosing (every day, divided doses) would speed up raising iron levels but they would be at greater risk of developing side effects because they are taking more iron.

I don't have any personal experience of supplementing iron on alternate days when I was trying to repair a severe deficiency. I absorb iron very poorly and when I was supplementing iron to repair a severe deficiency the alternate day idea hadn't come out yet. So I was taking 1 tablet, 3 times a day, for 21 months to get my ferritin optimal.

Knowing what I know now I would still want to take iron doses in the traditional way with a severe deficiency. But that would be my personal choice. For people who don't tolerate iron alternate day dosing would probably be better for them. For a mild iron deficiency alternate day dosing would probably be fine for most people too.

The tablets I took were ferrous fumarate 210mg (FF210). Each tablet contained 69 mg of pure iron, meaning that I was taking 207mg iron per day.

I currently maintain my iron by taking 1 tablet of FF210, 5 times a week, and my levels are now the best they have ever been - not perfect and not completely optimal, but I'm happy with them. It has taken years to get me to the point I'm at now - I first started taking iron pills in 2013.

One thing to be aware of is that raising iron levels is, for many people, a slow process. If you have a mild iron deficiency and a gut that works well, and you don't take any prescribed drugs or other supplements that affect iron absorption then you might be able to raise iron and ferritin to optimal in about four - six months. But it could take a lot longer if the deficiency is severe or your gut is in poor health.

The British National Formulary (BNF) still gives people the doses that they have always done i.e. dosing every day in divided doses, and are the ones that I was using when I raised my own iron and ferritin. Consider the doses given in the BNF as a maximum. If you then try alternate day dosing you can't/won't go over the top with your dose. :

bnf.nice.org.uk/treatment-s...

bnf.nice.org.uk/drug/ferrou...

bnf.nice.org.uk/drug/ferrou...

bnf.nice.org.uk/drug/ferrou...

Although there are always exceptions, based on what I've read on this forum and others, more people tolerate ferrous fumarate than ferrous sulfate, but the cheapest ferrous sulfate is cheaper than the cheapest ferrous fumarate so doctors prescribe the sulfate more often. I buy my own iron supplements from UK pharmacies without prescription and I always buy ferrous fumarate 210mg which comes in boxes of 84.

I've seen very few mentions of people choosing to take ferrous gluconate. I can only assume it is because you have to take more tablets to achieve the same dose of iron as you would with fumarate or sulfate. But if you wanted a tablet containing a lower dose of iron then gluconate would be a good bet.

People are sometimes told to take iron on an empty stomach. This increases the risk of adverse effects on the gut because iron is an irritant. I had no choice but to supplement iron with food because it was the only way I could tolerate it (my gut was in very bad shape), but obviously it reduced my absorption of the iron. So, having said that, would I have absorbed iron more quickly if I had dosed on alternate days? Sadly, I don't know.

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