I am sick of consultants who only look at figures. Just spoken to an gastroenterologist. He refused ..or couldn't answer my questions. Won't give me an iron infusion because my iron is within range. But no explanation as to why it has plummeted. All other symptoms..'must be due to something else.' Doesn't want to give me iron toxicity. That's his job... to see I get enough without harm!! He only has to look at my last infusion, see how much I was given and what the reaction was. Easy peasy. He said, sarcastically, that people do feel better with more iron. Isn't that his job to make patients feel better???? Seems h e wants to wait 'til I'm in the danger range.
What's more there is a 'range'. If my iron was pushed well up, I would still be within range. Surely everyone's needs are different. He then stupidly suggested I eat meat when iron is not absorbed through my stomach!!
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fiftyone
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I don’t have it to hand - perhaps someone else can post it - but there is a paper in the BMJ that states that some patients with fatigue feel better when their ferritin is over a certain value - it might be 50 I’m not sure. I’m sorry I can’t remember but it’s quite a low value in the range so you could try wafting that under his nose! Hopefully there is someone else who knows what I’m talking about and can help further! 🙈 x
thanks for your reply. My ferritin is currently quite good, but my iron is plummeting....... and my transferrin is abnormally low. Other indicators seem normal. If I had an iron infusion I'd still be within range.
I think ferritin can be falsely elevated if there is inflammation present. Might be worth mentioning this to him. Have you had your CRP checked? This is an inflammation marker.x
He said, sarcastically, that people do feel better with more iron. Isn't that his job to make patients feel better???? Seems h e wants to wait 'til I'm in the danger range.
I remember reading an anecdote from someone online who said that her consultant had told her that it wasn't his job to make people feel better. I can't remember what the context of that comment was, but I remember being appalled by it.
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I had major problems with iron several years ago. I had a GI bleed that got worse and worse over several years. It took three hospitals three and a half years to find the cause of the bleed. I had a large bleeding polyp in part of my colon. I was so weak I couldn't walk upstairs and had to crawl, but I got no help to replace the missing blood and iron. I had to fix myself.
I had a history of being low in iron and ferritin before this ever happened, and had been anaemic a few times throughout life. I found that every time I was prescribed iron I would be given enough to move my haemoglobin out of the anaemic range and into the range again, then my iron and ferritin would be in range, then the prescriptions would stop straight away. Within a few months my iron would be deficient again and I'd be heading for anaemia again.
I have a theory, but no proof.
Suppose that iron is needed for 1000 processes and biochemical reactions within the body. Let's call that "housekeeping". When iron and ferritin drop, and the patient becomes anaemic, the housekeeping won't all get done. A few weeks or months of iron supplementation might get some of the overdue housekeeping done, but not all of it. As a result the patient becomes iron deficient and anaemic again. Since the housekeeping is never caught up with it never takes long for the patient to become unwell again.
If doctors would treat to optimise ferritin and iron then the patient's housekeeping would get completed. Then they (or the patient) would need to maintain it by keeping watch on their ferritin and iron.
When I treated my own iron after my long-term bleed it took me nearly two years to get my ferritin up to mid-range. My serum iron was still low. If I stopped taking supplements both ferritin and iron would plummet. Eventually I started taking a maintenance dose and kept my ferritin at mid-range as best I could. After five years of maintaining my mid-range ferritin my serum iron started to rise. When I got all my iron-related results somewhere close to optimal I eventually gave up iron altogether.
During this whole palaver I was not having periods because I had had a hysterectomy years before. If I was having periods I am convinced I would never have succeeded in getting anywhere with my iron because my periods were always extremely heavy.
If I had my time over again I would pay privately for iron infusions because I gave up on doctors treating anything invisible a long time ago. I would try haem iron supplements. And after the infusions and haem iron I would have continued to test iron panels frequently for as long as it was necessary. I still do pay for an iron panel once or twice a year.
that is very interesting, jut how remiss consultants can be. My ferritin is good. Will have to see. Maybe I can be referred to the consultant who allowed me an iron infusion last time...when my iron level was higher!!
I had the impression he did genuinely care for how I felt and sympathised. He just didn’t think he could do anything about it. And very certain of his all-knowing, so not willing to give it a try at all.
Apologies if I'm off here, I'm still new to iron research, but have been trying to learn due to my own issues. Please correct me where I'm wrong.
Are you sure the issue is iron absorption?
If your Ferritin is currently quite good (and this isn't superficially increased due to inflamation) , it doesn't suggest an iron absorption or storage issue to me. If your transferrin is low, this will cause a low Total Iron Binding Capacity, and this will reduce/limit the amount of Serum iron (hence why you're seeing this drop along with Transferrin).
Transferrin can decrease due to a large number of reasons, but the two that stick out to me being Hypo are:
- Transferrin production reduced because the body has enough/too much Iron storage (ferritin), lowering TIBC and Iron uptake.
- Thyroid issues not adequately medicated, affecting the Liver Transferrin production and general Iron Homeostatis.
So, that would beg the question, is your Thyroid/T3 adequately treated?
The issue with dumping more Iron into your body (either by supplementation or injection), is I think that with low Transferrin, you'd be at high risk of iron overload. Your low transferrin would then become highly saturated.
So from my limited research, I would concentrate more on the Transferrin asepct of your bloods than the serum iron itself.
I know we shouldn't have to go down the private route, but I do know of a well reknowned iron and B12 specialist who helps patients who self refer. He is frequently mentioned on the pernicious anaemia forum.
I consulted him 3 months ago because the NHS have been gaslighting me for years about my B12 deficiency. I was very impressed. He diagnosed me with pernicious anaemia and I now self inject with ampoules sourced from Germany.
He does offer consultations in person for iron infusions, though they aren't cheap!
I can't mention his name/details publicly, but if you want more info let me know and I'll dm you.
I consider these types of consultants "post turtles". A turtle sitting on top of a fence post.
You know he didn't get up there by himself, he doesn't belong up there, he doesn't know what to do while he's up there, he's elevated beyond his ability to function, and you just wonder what kind of dumb ass put him up there to begin with.
I hope this mental image helps, and feel free to mutter "post turtle" under your breath when you meet a consultant like this, just loud enough for him to hear...
Well the average drop out rate for scientific studies at universities is between 7 and 9 %, yet the drop out for medicine/dentistry is around 1.5%. This points to the fact that general scientific studies are a lot harder, and a lower drop out rate indicates that the subject is not that difficult, so nearly everyone can pass. Hence, if you can get into medical school and are good at multiple choice questions, you will most likely get through and get your degree. It does not mean that you are particularly clever, have scientific deducting skills or are good with patients.
And these days with modern analysing techniques, there is an over-reliance on lab results and if the computer says you are in the normal range, then there is no problem. In science, there are never absolutes and as someone has recently pointed out, the normal range has been established with what is called a confidence interval of 95%, which means that 95% of people would fall within this range, however it also means that 5% would fall above or below that range. So sticking rigidly to a reference range because everyone has to fit in there is, scientifically speaking, utter nonsense!
But, applying the same definition, only 2.5% are over the respective normal range for weight...
Funny how they can ignore the 2.5%/95%/2.5% in some circumstances but not others.
And a repeated link post:
This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.
The normal range: it is not normal and it is not a range
This blog has the abstract of this paper plus link to the original full paper. Also includes some extra links to a video and some other related information.
It is all arbitrary, therefore there should be less emphasis on a range and more emphasis on how the patient feels. But that would be personalised medicine, which we seem to get further and further away now.
Yes, I have seen that paper - excellent publication. Should be rubbed into physician's faces when they bang on about the normal range...
And you are right, if you are sampling a random population for these normal ranges, there are undoubtably people in there that would be hypothyroid. And if that was not the case, then why are people feeling so lousy, if their thyroid hormones are at the bottom of the range? You don't need to be Einstein to figure that one out!
Patients must be able to trust medical professionals with their lives and health. To justify that trust you must make the care of patients your first concern, and meet the standards expected of you in all four domains.gmc-uk.org/professional-sta...
The World Health Organisation says:
Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.who.int/about/governance/co...
The NHS has an internal document on creating a health y NHS workforce. In that document, the NHS says:
Personal health is more than the absence of dysfunction and disease. Mental and emotional health, physical health and a healthy lifestyle all contribute to an individual’s health and wellbeing.england.nhs.uk/wp-content/u...
in my view, doctors are not fit to practice if they do not see that their job is to maintain the WHO definition of health or its version in the above NHS document above.
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Best course of action??
Pls can someone help shed some light on my recent blood tests?
TSH 65
Iron Panel results - thoughts please!
Is this thyroid related?
