It’s become apparent that my daughter’s ferritin levels are deficient and she’s going to put in a request to her GP for a full iron panel.
I routinely read here that one shouldn’t supplement with iron based on a low ferritin reading alone but I’d like to know what the supporting information for this is. I previously mentioned the need for an iron panel to her GP last year but this was swept aside, so, we’d like supporting info at hand in case the same thing happens this time.
I’m aware that the NHS recognises that a ferritin level <30 confirms iron deficiency but my question relates directly to how to now persuade GP to run a full iron panel.
July 23
Ferritin 4 ug/L (6-67)
Haemoglobin 133 g (120-150)
February 24
Ferritin 13 ug/L (23-300) note change of reference range due to my daughter turning 18
Haemoglobin 135 g (120-150)
I’ll be honest about the fact that she’s been taking Three Arrows simply Heme since the summer results, as well as consuming black pudding and beef.
If an iron panel confirms iron deficiency I would consider enquiring about an iron infusion. Privately if necessary. What do people think about this?
Thanks ever so much, as ever.
J
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We saw endo last month, appointment was disappointing; the endo was extremely rattled by my requests for further clarification on a couple of points. She (endo) visibly sneered at my request for my daughter to have an ultrasound. However, her demeanour changed completely upon examining her: she has a swollen thyroid and ultrasound appointment is this coming Friday. I balked when she told my daughter that she was to retest her thyroid *2* weeks after increasing her levo dose which, I think l, sealed the deal in terms of the awkward atmosphere in the room. As we left, she offered us a 2nd opinion. I obviously accepted and asked to see a particular endo whom I’ve heard favourable things about. Awaiting appointment.
Endo declined to retest daughter antibodies. To recap she has both elevated TPO and TSI antibodies. Her thyroid bloods are confusing, at least to me, as they don’t point conclusively to an over or under active thyroid.
July 23 (GP)
TSH 4.08 (0.47-3.41)
FT4 12.1 (9.3-17.6)
TPO antibodies 201 (0.0-34)
Unfortunately FT3 not tested.
Daughter prescribed levo by GP
August 23 (hospital)
TSH 2.88 (0.47-3.41)
FT4 12.3 (9.3-17.6)
FT3 5.4 (3.6-5.7)
I think this high reading triggered the lab to test my daughter’s TSI antibodies, thus:
1.92 (<0.56)
TPO antibodies 160 (0.0-34)
November 23 (GP)
TSH 3.34 (0.47-3.41)
FT4 12.2 (9.3-17.6)
Because the hospital said there was no need to see my daughter after the August results and because I didn’t spot the elevated TSI antibodies until last month (or, rather, didn’t appreciate the significance), we requested that her levo be increased from 50mcg to 75mcg.
At the endo appointment last month, she increased the levo to 100mcg. This was based on I think my daughter’s symptoms - fatigue - and the slightly low in range FT4. My attempts to highlight the elevated FT3 were not so much brushed aside as ridiculed.
I’m not even sure at this point whether my daughter requires any thyroid hormone replacement.
I suspect her symptoms are due mainly to her woeful ferritin. Vitamin D is deficient too. Folate not optimal, B12 is about halfway in range.
I’m really, really confused. Why is her FT3 at the top of the range (almost overactive) yet her TSH be elevated? I was left with far more questions than answers following the endo appointment - and, to top it all, my daughter’s dad verbally tore into me for questioning the endo. It was extremely upsetting.
Vit D has bombed from 71 in August to 38 in February. Range 50-120). Probably linked to winter months. She’s taking vitamin D with K2 capsules, 1000 IU/45mcg. She’s just upped to 2 a day.
Not currently taking magnesium. Should she be?
B12 is 671 (187-883) not currently supplementing.
Folate 6.1 (3.1-20.5)
Folate was below range in July so is responding to supplementation. She’s on 400ug of folate daily. Trying to get her to double figures.
Not taking a B complex, hence separate folate. I take Thorne basic B complex but daughter hates the taste. She’s autistic and has sensory issues.
What are your thoughts on my daughter’s seemingly odd thyroid blood results? Do they appear unusual to you? What kind of thing should I be focusing on at the next endo appointment? Obviously we’ll know more about her thyroid from the scan by then. Plus we have blood forms to take to the phlebotomy depending in 6 weeks or so, so we’ll have an insight into how she’s responding to the levo increase; she felt odd on 100mcg so we’re using a cutter to make 87.5mcg. My concern is that her FT3 will be above range by then.
Just for info - an "iron panel" is also known as "iron studies" which might help with searching for research papers.
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Someone with low ferritin taking iron supplements could raise ferritin or raise serum iron, or raise both. There have been cases on the forum of people taking iron supplements and their serum iron rose very high but their ferritin stayed low - so they kept on taking more iron because only ferritin was measured. They became very ill before an iron panel showed the problem. Unfortunately, this is anecdotal.
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Another issue is that in some kinds of anaemia (Anaemia of Chronic Disease or Chronic Inflammation), the ferritin shoots up while the serum iron stays very low. This isn't desirable either.
Another issue that requires an iron panel to detect is when ferritin is sky high and transferrin saturation is low. Apparently this problem sometimes occurs in kidney disease, but I don't know if it happens in other circumstances. This paper is quite old (2006).
If there is a lot of iron in the blood it could end up deposited in the organs and getting rid of it is not something the body is good at. High serum iron is associated with an increased cancer risk :
I'm being cynical now, but I think one reason why doctors don't bother doing iron panels very often is because they don't prescribe iron supplements for long enough for the high iron/low ferritin issue to become obvious (if it is going to happen at all), and they also rarely re-test ferritin to see if it is rising with the supplements.
I notice that your daughter has iron deficiency (her ferritin is well below range) without anaemia (her haemoglobin is well in range). These might be helpful :
If the body makes huge numbers of red blood cells in a short time e.g. when someone gets a Vitamin B12 injection because they are severely deficient, the body can run short of potassium until such time as the making of red blood cells returns to normal levels, then potassium requirements also return to normal.
You could also connect the haematinics lists of nutrients with this list of vitamins and minerals people have low levels of in thyroid disease :
as above: You'd like to think that repeated low/ deficient ferritin results would trigger a full iron panel, how can it not?
And
My GP freely admitted she rarely ran full iron panel as she wouldn’t be clear on understanding implications of results
I went down a research paper rabbit hole looking for just one that would support testing iron (much less a full iron panel) when iron supplementing. Not only did I not find one, but there are More than I can count that says DON’T test iron, that ferritin is the most accessible and reliable to measure iron.
There were World Health Org guidelines that are written up, and are consistent with other papers.
That answers Tiggers question, and explains SD’s doctors answer.
I can’t believe what I’ve found, I have to believe there is something about testing iron/full iron panel. I might keep looking, but it didn’t look good.
edit- here is one, good pull quotes scattered throughout but unless I’m misunderstanding some terminology- the only thing it agrees on to add to ferritin is CRP.
Although reading it and knowing that serum iron is indeed volatile, I can sort of grasp where they are coming from. But it ignores that regular iron testing is a fine proxy to prevent any excess over the short time interval between iron testing. I’ll take it!
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