As mentioned before my ferritin was 13, everything else ok, can’t take oral iron, been denied infusion asHB in normal range. Have recently had transferrin saturation, HB and ferritin retested.
transferrin level 3.6(2.0-3.6)
Serum iron level 8.2(9.0-31.0) below low reference
Transferrin saturation 10%
Ferritin 8 (5.0-204.0) consistent with iron deficiency <30
HB 124(115.0-160)
Even though it’s obvious that ferritin and transferrin are too low, and I’m so unwell still won’t refer me for infusion as HB is still in range and has dropped from 130 to 124, not allowed to until my HB drops below 100.
GP has written to HCOP regarding ferritin who have said I’m not a candidate for infusion because HB is normal and even if transferrin is low still not candidate as HB is normal. They know about my other problems, IBS, MALABSORPTION, THYROIDECTOMY,
don’t have appointment with them or ENDO until October .
IBS is so bad no idea what results will be in 8 weeks time if I last that long .
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Pennypingu
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Are you able to consider Three Arrows heme iron supplements.
It’s a long game but does slowly work. My daughter and I both had ferritin of about 5, and this year we are now up in the 20s with other parts of our iron panel optimal.
I have lots to say about iron. It is an extremely individual process. We all absorb differently, and we have to be very careful when supplementing that we avoid iron toxicity.
Your profile is indeed one of the worst I’ve seen as well. But with three irons you can likely get your iron itself up fairly quickly, which ferritin will eventually follow.
I only suggest supplementing if you can commit to getting an iron panel every 8-12 weeks.
I’ve not heard of heme iron, will look into it, they’ve told me not to supplement while HB is in normal range even though ferritin and serum iron etc is low and then they’d suggest oral iron even though I can’t tolerate it and it’s in my patient record enough times I can’t have it 🤷♀️
Not totally gluten free as having to do food diary for HCOP because of the constant nausea, and weight loss, malabsorption, IBS problems and don’t see them until October, not coeliac but avoid a lot of wheat products as doing food diary has just proved what I keep telling them.
was test done early morning, ideally before 9am, only drinking water between waking and test and most importantly last dose levothyroxine 24 hours before test
Do you always get same brand of levothyroxine at each prescription
Which brand?
These results show you need dose increase in levothyroxine
Aiming for Ft4 at least 70% through range and ideally Ft3 will be at least 60% through range
Request trial increase in Levo to 87.5mcg
Cut a 25mcg tablet in half to get 12.5mcg
Retest in 6-8 we
Have you ordered Three Arrows iron to try yet
Many, many members have great success with this
You also need to improve low folate
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)
This can help keep all B vitamins in balance and will help improve/maintain folate
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
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 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
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) and continue separate B12
Post discussing how biotin can affect test results
yes bloods done as advised before 9am too, on ADVANZ/mercurypharma/Eltroxin, written in repeat prescription. Have problems with tablet form medications due to bulking agents/additives, this brand has been ok so far. Don’t actually eat much food containing gluten, tried some gluten free alternatives but just make IBS worse, eat mainly fresh foods that I get from farm shop as no additives.
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.
Can you tell us what iron products you have tried?
You also mention that you have IBS and Malabsorption. What kind of treatment do you have for these? What kind of dietary changes have you made to try and help these conditions?
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transferrin level 3.6(2.0-3.6)
Transferrin saturation 10%
Just for info...
"Transferrin" goes high in iron deficiency - and yours is top of the range.
"Transferrin saturation" is not the same as "transferrin" and is low in iron deficiency. Yours is very low at 10%.
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Have you ever tried haem iron supplements? A lot of people have had success with those even if they couldn't tolerate the iron salts that doctors usually prescribe.
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I don't know if it is still true, but the Patient Information Leaflets given out with iron salts used to say that the tablets should be taken on an empty stomach. A large proportion of people can't tolerate iron salts on an empty stomach. I couldn't. I ended up taking iron salts with a meal or immediately after a meal. It obviously slowed down my absorption of the iron but I had to get it down me somehow.
I dealt with my low iron a long time ago now. These days I would do things differently. I would try haem tablets, or I would save up for a private iron infusion. Have you thought of having a private iron infusion? There are several private iron clinics around the UK that offer them (for a fee). If you can afford it, it would be well worth it.
Making NHS patients wait for their haemoglobin to drop to under 100 before giving them an infusion sounds like sadism to me. And some people are very good at making haemoglobin despite being very iron deficient.
Tried tablet form, multiple brands, liquid form, even child liquid form, not heard of heme but has been mentioned so will look them up. My problem with medication isn’t the actual medicine it’s the additive and bulking agents, stomach just doesn’t absorb properly
Yes have looked at private infusion but way beyond my means unfortunately.
Have mentioned you can have normal HB and be iron deficient but they can’t be bothered to look it up themselves, can’t get face to face appointment otherwise I’d print it off to prove it. Eat iron rich foods I can tolerate, food/fodmap diary, have buscapan,Mebeverine for IBS, had numerous endoscopies, polyps removed, all benign.
They can be bought in pharmacies in the UK without a prescription.
The one that fewest people tolerate is ferrous sulfate. It is the one most likely to be prescribed or to appear in over the counter supplements. It is the cheapest supplement available.
Few people end up trying ferrous gluconate but it is sold in quite small doses, and people can try taking just one or two every other day to see how they get on.
Ferrous fumarate seems to suit quite a few people. This is the one that I took.
I first started treating my own iron over 10 years ago. At the time the Patient Information Leaflets recommended taking iron on an empty stomach. I couldn't tolerate that and had to take them with a meal or immediately after a meal. Obviously this slowed down my absorption of iron, but it was the only way I knew of at the time to get iron into me. It took me nearly two years of supplementing to get my ferritin up to mid-range. My serum iron stayed low, despite the supplementing.
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they’ve told me not to supplement while HB is in normal range even though ferritin and serum iron etc is low
Frankly, I think that is stupid and sadistic advice. It must have come from someone who has never been iron deficient or anaemic.
People can be iron deficient without being anaemic. In that case the iron deficiency should be treated. Invariably, iron will become deficient long before the haemoglobin will drop, but that isn't a reason to ignore the iron deficiency.
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Ferritin
Blood test results
Beyond annoyed - only tested TSH
High ferritin, low haemoglobin
