Unsurprisingly my ferritin has fallen back to the very bottom of the range yet again after i ceased iron supplements back in march. Raised a call with the surgery this morning and within 6 minutes of raising the call online it had been closed by the enhanced care practitioner as saying no action required as ferritin was in range and no need for supplements - i might add it is only about 2% into the range. Anyway thats another story and i will start a bun fight with said person next week and ask why for three years i am getting such inconsistent responses from the surgery about my iron levels….grrrrrrr so cross.
Looking online though for the low ferritin pathway for my local NHS i came across an article for self referral to an iron clinic in the private wing of my local NHS hospital which i could do as all they say is need certain blood results from last 30 days. It says there will be no investigation of the cause of low iron but if meet criteria then can pay for an iron infusion. £200 consultation fee plus £495 for the actual infusion. Has anyone else had success in getting an iron infusion privately in a similar way please?
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In the past I have had a private iron infusion. Trying to remember the details but I think I just needed a ferritin blood result and short consultation with a doctor and straight onto the infusion.
It will take your iron/ferritin sky high initially but that all settles over the following few months to more normal levels.
So far mine has lasted me but I'm now post menopausal.
Thats a good question and my memory might be mistaken but I don't recall a full iron panel being required but different clinics might have different requirements.
If you're interested then there are a number of clinics around the country if you have a google.
can i ask why they just needed ferritin blood result and not a full iron panel?
I can't answer your question, but I know from reading HU for a very long time that some people can have low ferritin, start iron supplementing, and the only thing that really changes is their serum iron. Because retesting shows their ferritin is still low the patient continues taking iron, and they start to feel worse and worse. The bloodstream isn't a healthy place to have masses of iron because excess amounts can end up depositing in the organs and the brain, and the body has almost no methods of losing iron.
I have never understood why doctors ignore this possibility, but I suspect it doesn't fit in their flowcharts, and they always want to save money.
It is true that people whose serum iron goes up dramatically and ferritin stays low while supplementing are much fewer than those whose iron stays low while ferritin goes up, but that isn't a good reason to ignore the fact such people exist.
Thanks you. It’s interesting and complex and will take me a while to understand. Can I ask please - so, for those people whose iron goes up but ferritin stays low when they supplement iron - how do they improve their ferritin?
In some cases it appears that the patient may have methylation problems. This is related to having less than ideal MTHFR genes (which is not unusual). This can be reduced as a problem for some people by increasing their intake of "methyl donors".
So, for example, they would need to improve their B12 with methylcobalamin rather than cyanocobalamin, for example. Also, improving folate with methylfolate rather than folic acid is essential.
It may seem odd to mention B12 and folate in connection with improving iron and ferritin, but some people have improved the balance of their serum iron and ferritin by increasing their methyl donors.
Thank you for taking time to explain it Humanbean. It makes sense about the “methyl donors”…never heard of any of this before, very interesting to learn although I expect a lot of the finer mechanisms will be completely over my head. I’ve been wondering about multivitamins, spatone(sp?), floradix…etc and all the otc things that contain iron…are they dangerous then? Or are they just very small doses…or a different type of iron. Sorry for all the questions at 0857 on a Saturday.
As for the lower dose iron supplements, I'm not always sure what form the iron exists in the products. I wrote this post some years ago, discussing all the iron supplements I was aware of at the time - but this was written before heme supplements became more widely available in the UK or were imported from abroad, and these days I think most people should try those first :
Edit : I forgot to say - the link above was written when doses of ferrous fumarate, ferrous sulfate, and ferrous gluconate were higher than they are now for the reasons discussed in this thread :
Blimey! I didn’t realise any of that! so iron in a multivitamin blocks the absorption of everything else in the multivitamin!!?? I haven’t read it all yet, saved this post to read again later, but interested to read about iron/ferritin being relevant for weight loss too. Wow! Thanks humanbean and greygoose for all the info you give on here.
Hi Humanbean, thanks for this so very helpful post, it seems to fit and I am sure is another piece in my healing journey - I have already placed an order for methylfolate and methylcobalamin (and know to sort out the B12 before the folate). We are all so grateful for the information you give.
Hi JoJoloveschocolate am one of those with higher than necessary serum iron but low ferritin (28) am going to discuss with gp next week and ask for haematology referral. Have been advised to take iron so bought three arrows but was then told NOT to take in view of confusing advice I decided to stop the iron for now. I will report back if I get any useful info. 💜
Hope you get on ok. I don’t know about my iron yet only that my ferritin is low. It was 30 on the nhs test and I just did a medichecks that said it was 21. I’m trying to improve it through diet and am hoping it will go up because my periods are now lighter on levo. I’d be interested to know how you get on. I hope you get it sorted after being given conflicting advice like that!
this was really interesting! Just today I was told that probably need IV iron. My ferritin is low (21, which normal starting at 38). I’ve always been leery of iron supplementation because of the cardiovascular risks due to it being in bloodstream. What’s the solution? Do the IV iron or take supplements or??
First you would need a full iron panel so you can see the current balance of serum iron and ferritin. It will sometimes give you a hint as to what the effect is likely to be if you started supplementing iron.
With any decision (supplements or infusions) you should test another full iron panel within about four - six weeks of starting whatever you choose to do to see what has changed and by how much. It is also useful to know which of your iron and ferritin are changing the most.
The self referral form ive seen for our hospital all its says they want are results for full blood count, ferritin and transferrin saturation….but not a full iron panel.
I just wanted to point out that the iron supplements that the NHS prescribes are available in pharmacies without prescription. A pharmacist has to approve the sale so if they are at lunch you might be denied until the pharmacist is available again.
I bought ferrous fumarate online. Had to tick a box saying I had no other problems; I could do that quite honestly because my doc said my thyroid dose was adequate. 🤫
You need to get thyroid levels optimal otherwise ferritin will just drop again
Looking at previous posts your dose Levo was inappropriately reduced a year ago
What dose are you currently taking
What are your most recent thyroid results
If GP remains difficult, see thyroid specialist endocrinologist
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 if necessary
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Hi SlowDragon, may I ask you a question on your first comment that you need to get thyroid levels optimal or ferritin will just drop again. I think we need optimal ferritin for good thyroid function, in which case, is this a Catch 22 situation?
I am totally shocked at the charges made for a private iron infusion. I had an iron infusion a few days ago on the NHS. It took only 15 minutes for a solution to be dripped into my arm. How can they justify such charges. Absolute rip off. There is ofcourse nurse's time and probably a doctor looking at results....even so....dreadful cost.
I paid £750 ish at a private iron clinic - but a consultant anaesthetist administered the medication in case of anaphylaxis, there was a nurse, plus they had to pay for the premises. The anaesthetist said the clinic didn’t make any real profit after these expenses and I believe him. Obviously his time (and he was getting paid for expertise not time) and the nurse’s wouldn’t be cheap.
Unsurprisingly my ferritin has fallen back to the very bottom of the range yet again after i ceased iron supplements back in march.
Why did you stop taking iron supplements in March? Had you had an iron panel done, or any other test with results suggesting you should stop?
For people who lose iron easily, ferritin dropping to very low levels can happen very quickly once iron supplements are stopped.
When I used to take iron I once experimented on myself and pushed my ferritin up to about 170 mcg/L (top of range was 150). Then I stopped taking iron supplements for four months and my ferritin dropped to 80 mcg/L. I've read other anecdotes on this forum suggesting some people lose it even faster.
I found that once I got my ferritin where I wanted it to be (my serum iron was still low) that I had to take a maintenance dose. In total I had to take full dose iron supplements for nearly two years to get it up to mid-range, then I took a maintenance dose for five years before it appeared to become self-sustaining and I stopped supplementing (although it has been dropping slowly since then).
So, doctors giving patients enough iron supplements for 2 or 3 months is just a drop in the ocean for many patients, and their levels will often drop like a stone when they stop.
I ended up fixing my own iron rather than relying on doctors who think a result 2% within the range like yours is perfectly fine, once I learned I could buy and test my own without them.
Hi - i was advised to stop taking the iron supplements back in march as my red blood count went and had been over range for quite a while. In hindsight after doing some further research i think that was probably a normal response to the body suddenly getting some iron after probably many of years of being insufficent. Im more frustrated at the dismissive response of the ECP as they clearly hadnt looked at my history or the actual figures of the result. I will post my most recent blood results later. My surgery only ever do ferritin and no other part of the iron panel. Before starting iron again i will get another medichecks iron panel done.
Hi if it’s just Ferritin you need you can get an infusion just for that. Both myself & my daughter have had them at NHS local hospital in the past & my daughter paid privately recently for one at a clinic in Manchester. I’m not sure what she paid though.
If you are willing to pay anyway you could just as well see a specialist dr K at Iron Clinic Nuffield Health Cambridge Hospital who offers visits in person and online and is highly recommended in my B12 group where iron/ferritin problems are very common too. You could start by emailing them as he apparently answers all emails and fairly quickly too.
hi, i had an iron infusion some 18 months ago and my ferritin went up to 350. Ever since it stayed elevated to 280 and it's not going down. Had i know this, i would not have had the Ferinject infusion of 500mg (the first infusion) and the second infusion was a week later.
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