iron replacement

[Pennypingu]

has anyone used spartone iron replacement sachets? Saw my general health consultant and because I’m still not able to have ferritin infusion until HB is below 100 even though ferritin is only 6, she suggested trying these as can’t tolerate tablets and apparently no additives which also give me problems

[TiggerMe Ambassador]

There is very little iron in Spatone I'd recommend Three Arrows Heme iron which is very gentle and easy to absorb.... healthunlocked.com/thyroidu...

[pennyannie]

Hello Pennypingu -

I couldn't tolerate the NHS iron tablets either and purchased ' Gentle Iron ' which didn't upset my stomach - and was taking 3 capsules daily - but any ' iron bisglycinate ' product will be kinder on your stomach.

I also purchased the Spatone liquid iron sachets but think the dose low - and remember taking 3/4 sachets daily in conjunction with the iron capsules and ate liver twice a week.

My ferritin did rise from 22 to just over 45 - but it did take around 6 months -

I doubt sachets alone will help much - so sorry - I felt like rubbish at 22 - so can only guess how you must be feeling - how ill must one be before the NHS step in -

though I don't understand iron and why you need to wait because of your HB being over 100:

[Pennypingu in reply to pennyannie]

infusions are given in large amounts where as oral can be adjusted quickly if any reaction apparently

[pennyannie in reply to Pennypingu]

Thanks - yes - I can appreciate the difference -

it's just that a ferritin of 6 seems awfully low - and ferritin takes ages to build up and a NHS doctor suggesting Spatone to you isn't going to get you anywhere - anytime soon :

[Pennypingu in reply to pennyannie]

I think it’s because she knows how sensitive I am to medication and thought it worth a try. She did say she will look further into the ferritin infusion to see if there’s any way around it but they have to follow what is nhs protocol. Done loads more bloods , transferin, calcium,potassium, some I can’t decifer

Referred me to gastro now as losing so much weight , even IBS safe foods are making me unwell, daren’t wander further than the garden. Endo appt is later this month so see what she says about levels. Recent ones TSH =2.2(0.35-4.9) T4=14.9(9.1-17.6), T3=4.0(2.4-6.0) 75mcg mercurypharma.

[pennyannie in reply to Pennypingu]

My research suggested that ferritin needed to be at least over 70 for any thyroid hormone to work well -

so the implications and knock on effects - need to be considered -

as you likely are not able to convert or utilise fully whatever thyroid hormone replacement you are taking anyway.

[helvella Administrator in reply to Pennypingu]

She is already breaking NHS protocols for iron deficiency by not prescribing the standard treatments and by suggesting Spatone. And lack of referral seems questionable. Yes - that guideline does say haemoglobin less than 100, but it says that as an indication of urgency, not as a barrier to doing anything useful at all.

NICE > CKS > Health topics A to Z > Anaemia - iron deficiency

Anaemia - iron deficiency

Last revised in August 2024

cks.nice.org.uk/topics/anae...

https://cks.nice.org.uk/topics/anaemia-iron-deficiency/management/management/

[helvella Administrator]

Might be some useful information in my blog:

helvella - Iron Document

This is a summary of what I have read up and found out about iron supplements over the past few years. I am not in any way medically trained. You are strongly encouraged to check every detail before making any decisions for yourself.

Last updated 04/07/2024

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

[SlowDragon Administrator]

Loads of members have great improvements on Three Arrows

even if you normally struggle with absorbing normal iron, you may be fine with this

Previous post with details on iron

healthunlocked.com/thyroidu...

Ferrodyn supplement

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

What are your most recent vitamin D, folate and B12 results

Folate was too low in that previous post

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 will help improve B12 levels too

Are your thyroid hormones optimal

Test TSH, Ft4 and Ft3 together

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

[Pennypingu in reply to SlowDragon]

B12 etc are the same as not retested, ferritin 6.

T3=4 (2.4-6.0)

T4=14.9 (9.1-17.6)

TSH =2.2 (0.35-4.9)

Test as suggested on here.

[SlowDragon Administrator in reply to Pennypingu]

Free T4 (fT4) 14.9 pmol/L (9.1 - 17.6) 68.2%

Free T3 (fT3) 4 pmol/L (2.4 - 6) 44.4%

So your low Ft3 won’t be helping as it causes low stomach acid and poor nutrient absorption

Hence weight loss and IBS

Request increase in dose levothyroxine to 87.5mcg daily

Or even 87.5mcg 4 days per week and 75mcg 3 days

[SlowDragon Administrator in reply to Pennypingu]

so are you taking a daily vitamin B complex to improve low folate

Weigh loss can be a hypo symptom as gut function is so poor

And poor gut function results in low ferritin…..vicious cycle

You are likely to need addition of small doses of T3 prescribed alongside Levo to bring Ft3 up at least over 5.5

[Pennypingu in reply to SlowDragon]

no b complex as yet, need to find something very basic due to sensitivity of additives, folic acid can’t tolerate that, endo has said to gp, she doesn’t prescribe T3 and never has,never will, I’m not in a position to afford private medication unfortunately but thanks for all you input it helps a lot.

[SlowDragon Administrator in reply to Pennypingu]

Thousands of U.K. patients do get T3 on NHS

Roughly where in U.K. are you

over 66,000 prescriptions in England in last year

Searchable by ICB area

openprescribing.net/analyse...

Try different endocrinologist

Majority of endocrinologists are diabetes specialists and often useless for management of complex thyroid patients

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS

thyroiduk.org/contact-us/ge...

[Pennypingu in reply to SlowDragon]

Thanks, in Nottingham, I know if we see someone privately our gp practice won’t see you for the same issue once you’ve gone private

[Hedgeree]

Hi Pennypingu,

I took Spatone sachets for a while they did help raise my levels at the time but only a little. I was taking two in orange juice or a ginger shot first thing in the morning on an empty stomach every other day. Then no food for an hour or so after. My levels did raise over a period of about four months but slowly. I'm not overly keen on the smell of it or the taste so found it best to disguise it in a ginger shot.

Many here use the three arrows heme iron that TiggerMe suggests in their reply and get great results. Hope you find something that works for you.

[Pennypingu in reply to Hedgeree]

Thanks.

[humanbean]

Just for info :

Spatone sachets contain 5mg iron per sachet. They taste quite nasty, and they are expensive.

For comparison, the ferrous fumarate 210mg I took to increase my iron (one of the iron salts that doctors prescribe) contain 69mg iron per tablet. I know that lots of people can't tolerate them. And I only managed to tolerate them with or immediately after a meal.

If I was trying to raise my iron today I would try haem capsules like Three Arrows before anything else.

I'm shocked at the cutoff levels used for deciding who gets referred to gastroenterology posted by helvella above.

Men are referred if their haemoglobin is under 120.

Women are referred when haemoglobin is under 100.

On this page

cks.nice.org.uk/topics/anae...

it says :

Anaemia is defined as a haemoglobin (Hb) level two standard deviations below the normal for age and sex:

In men aged over 15 years — Hb below 130 g/L.

In non-pregnant women aged over 15 years — Hb below 120 g/L.

In children aged 12–14 years of age — Hb below 120 g/L.

So if below 130 is anaemic for men they get their referral when their haemoglobin drops to 120 i.e. by 7.7%.

If below 120 is anaemic for women they get their referral when their haemoglobin drops to 100 i.e. by 16.7%

So women are being disadvantaged a lot in the case of treatment for anaemia. I have often thought that the medical profession thinks that anaemia is "normal for women" and is unimportant, and that difference between the treatment of men and women just proves it.

😠 🤬

Hope that makes sense and my arithmetic was correct.