My ferritin is now 7. (Safe levels being 13 and above).
Haemoglobin is 114 (Safe levels used to be 120 and above but now all of a sudden are 115. Surely just a coincidence that it’s women who experience lower iron levels, as a rule. Surely).
MCHC, transferrin, serum iron etc all out of whack, too.
The alarming things are:
a) I can’t take oral iron supplements at all. First because of gastric symptoms and now because of a type of pelvic prolapse .. both caused by taking iron
b) It’s impossible to get an NHS haematology team or my private health insurance cover to give me an iron infusion. Iron is ebbing out of me, and my docs are standing by.
Am sure you all have worse stories.
Please share them.
UPDATE:
I called the NHS haematology unit I am under the care of, nominally if not much more, yesterday.
The secretary I spoke to listened to what I had to say. “They’ll probably ask you to come in and have more blood tests to show what you are describing to me”, she said. I said “tests for the exact same thing? But these were from last week and were done in your hospital. “ I don’t think they can see those results here on their computers” she said.I persisted.
Long and short of it- I said I can’t come in for more tests. I feel terrible and can give the docs screenshots of what my GP showed me. This secretary listened and took everything I said 100% seriously. She wrote down the results that I dictated to her and said “I’ll speak to the doctors, then call you back”. Two or three hours later I had a call “they want you to come in for an iron infusion ASAP”. So I’m having it done tomorrow, breaking my rule of no weekend medical procedures but so what, I am overjoyed. I asked this lady I spoke to for her name and said “[her name], today you really helped me and that made all the difference”. I am and was so relieved to meet someone in the system who really cares and goes the extra distance to make stuff happen.
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This is probably irrelevant to your question s I read that high red blood cell count is a sign of Hypothyroidism. I don't know if that is anything to do with Iron ,or the body trying to do more to get oxygen ( from red blood cells) into muscles .
You might be interested to know this: about 2 weeks ago I was sitting in my friend's kitchen when she got a phone all from her GP .On loudspeaker I heard him tell her that her t4 test had come back at 13.8 ( range 12-22) and that this confirmed one done last autumn that T4 was low-in-range ,so he recommended starting on t4 .This dose ,they would would be titrating gradually upwards starting at 25microg ,with testing inbetween ,going up to 75 and maybe then 100 depending on the test results. So for these enlightened Medics 13.8 triggers concern . My GP who is a tsh-only neanderthal marked a test of tsh at 8 as "borderline" when my tsh was low-in-range and I was showing Dementia-like symptoms . The moral is : avoid neanderthal GPs ,like mine ,or go to.psychiatrists who have much more knowledge of the effect on the brain ( and body).of sustained T4 depletion .I got my hypothyroid diagnosis via a psychiatrist Good luck to you
I would say “could you tell us which GP practice this doctor works in?” but I think no practice could cope with the hundreds and thousands of unhappy thyroid patients who would sign up overnight.
Glad to hear some people are in better hands than the majority of us.
I had similar levels of Ferritin although with top of range haemoglobin. I’ve just had my second Ferinject infusion as my Ferritin won’t stay up. I’m still menstruating at 52 (heavy) and that is part of the reason why women’s levels fall. I was fortunate to have the means to pay for private infusion as like you I couldn’t get it on the NHS so I really sympathise.
Have you tried the protocol of 1 x Ferrous Fumarate every second day with VitC as that’s what the clinic advised me for going forward? But maybe not possible with the prolapse? I’m v surprised in your case you can’t get infusion and I’d try and get hold of the NHS guidelines for iron in your area.
Ferrous fumarate made me feel worse than I feel when anaemic. I had so many gastroenterology investigations before we realised the problem was the iron supplements.
I tried all the other iron types. In the last year I have tried multiple types, each for about 6 weeks until the effects are so bad I have to stop. Despite this, my iron / ferritin levels have still gone precipitously down.
Good idea - guidelines. Just the thing you think you can do easily and forget - when anaemic - about doing, but I will try to look them up today!
gosh yes absolutely fine, it took about half an hour then I was shopping in London followed by a glass of wine at the airport 😆 side effects are generally minimal. I felt a little fluey 48hrs later which is normal and I just took paracetamol and went to work.
I am not absorbing iron or zinc well. My iron levels are low and zinc non existent. I cannot take iron tablets because of stomach reactions. What I am now doing is taking liquid iron every other day, with vitamin C rich lemon juice, hoping this will be kinder on my stomach, adding more iron rich food to my diet (liver/cocoa powder) and using an iron oral spray daily. Will be tested early in July. My doctor said iron infusion can induce anaphalactic shock which is one reason NHS is reluctant to do this, I believe.
I wonder how likely that side effect is. Do you know?
From all I’ve heard, and can see on the ground, the issue is cost.
My NHS GP wants me to have this infusion done as does my private haematologist but it’s the people who control purse strings in NHS and private health insurance who want to deny the infusion.
I’ve had a CT scan with contrast that brought on an allergic reaction but I never hear that risk being used to prevent CT scans for all.
hi, your GP is out of date - there used to be a relatively high risk of anaphylaxis but newer preparations such as Ferinject are much much safer. My husband is an anaesthetist and uses it frequently at work for pre-op patients (low Ferritin affects post-op outcomes and recovery).
fascinating, thanks for explaining. I’d heard that iron deficiency in hospital affects outcomes and didn’t realise doctors were already controlling for / fixing the underlying problem.
I went into hospital 2 years ago with what were thought to be heart issues - following an ECG that (a surgeon friend told me) looked like that of a chain smoking 70 man who does no exercise and has a heart condition rather than a much younger, healthy women who never smokes, rarely drinks etc.. No reason was found for it. Whenever I raised the extremely low iron I had at the time as being a possible cause, doctors did not listen at all then or when discharged, when I again said I didn’t feel well because of my low iron. I guess as I wasn’t due an operation, it was of no interest and wouldn’t register in the figures.
Do you think your husband would mind coming here and reading a few of the threads one day and giving a talk to his hospital about the unmet need for good thyroid care? Or helping us with figuring out how to fix some of them through levers that already exist in the healthcare system?
Anaesthetists are very well informed about Iron deficiency with or without Ferritin, and my OH has an understanding about my issues and hears me talking (a lot) about the poor care people report in this forum. He has no training in endocrinology though apart from lectures at med school a v long time ago, so wouldn’t want to get involved (also he’s a clinical lead and his workload is brutal).
You can’t really talk to a hospital as such but there have been a few papers at anaesthetic conferences recently so knowledge is spreading that way at least.
Hi csj113, that's really interesting, about ferritin affecting post-op outcomes and recovery, please could you tell us more? Or just me if I'm the only one interested? What effects does low ferritin have post operatively?
Yes, I eat a lot more meat than I otherwise would.
What I would like to see - for all thyroid patients - is an acknowledgement on NHS thyroid sites that patients are more than averagely likely to need iron supplementation.
Even when I speak to haematologists, they say there is no overlap.
I am hypothyroid (on medication) but I suspect my difficulty absorbing iron/zinc etc through stomach is due to taking metformin and omeprazole which both seem to mitigate against absorption of B12 and likely these other minerals as well.
Another possible overlap is that constipation - caused by iron - creates ideal conditions for bacteria to proliferate in the small intestine and bowel.
Those bacteria then make it harder for the body to absorb the vitamins it needs from food.
You then become malnourished, meaning not only is your iron not absorbing properly but all the other vitamins are low now too.
I was advised to go on it not long after I started taking iron supplements.
But when I stopped taking iron supplements, my symptoms of what appeared to be reflux (I say this with caution as low stomach acid can disguise itself as / be misread as high stomach acid, so people here say) stopped completely. A vicious cycle of side effect and then secondary medication.
I have been on omeprazole for about 6/7 years. Take two before I go to bed. Seems I have too much acid. Seems to get worse overnight, so two before i go to bed seems to solve t he problem. O don't experience any kind of acid reflux at all, just bad stomach pain. I am scared of not taking the meds in case the pain returns.
I went to my doctor. They must've conducted tests. Can't remember. I have had a camera down my stomach and a few months ago an xray where they said I had acid reflux....though I've never been aware of that particular problem. I used to take one omeprazole in the morning, one at night til a consultant informed me that two could be taken together. So I switched to two at night and it solved the problem.
I have B12 injections every eight weeks at my surgery. recently started. I have just started taking Zinc citrate capsules (too difficult to swallow, have to take out the powder) and am taking liquid iron - one teasp. every other day to see if my stomach can take it. I am taking one juice of a lemon (vit C) with the iron. I will be tested again early in July, to see if things are improving.
Had to do a low Fodmap diet earlier this so I now also have digestive enzymes and probiotics and other delights, alongside all the vitamins, constipation cures and other wishful thinking soft meds.
We have had a number of members who have had similar problems with iron.
Some have decided to take iron as haem (also called heme).
There are (at least) three pathways for absorbing iron.
The iron supplements like ferrous sulphate go down one route. And very often cause gut issues. And require adequate acidity (hence advice to take with lemon or something).
Ferritin is absorbed by another pathway. But there are very few ferritin supplements available.
And Haem goes down yet another pathway. It does not require acidity. It does not cause gut issues. There aren't many haem supplements but a few can be obtained. And they are more expensive than standard supplements. (But less costly than infusions!) And they can be taken long term.
can you recommend any brands available in the UK please?..ideally easy to take as my daughter struggles with large tablets..chewable..or gummy or small size?
Crikey HowNowWhatNow another gruelling situation for you. It’s mostly entirely misogynistic it seems to me. Not simple prejudice but more than sprinkling of hate and another situation showing our level of care is dire. ‘They’ waste so much money in the NHS and just do not supply the care that actually could be given fairly simply. Who the heck is on our side? Doctors know nothing about overlap and I think hypothyroidism is the most ‘wholly’ of illnesses it’s all about overlap. It’s hardly surprising (but it is) that they can’t get their heads around it. All this ‘evidence based’ medicine is working very effectively against us. When all this evidence based medicine started I thought it was a good idea! It has effectively cut off routes to much better care.
The evidence says we are women. And that we women rack up chronic conditions as we get older that our doctors and health departments find so profoundly unsexy - unless we are a) rich or b) famous - we are likely to be palmed off to go back to our eternal waiting room of pain, fatigue, unfulfilled promise and trauma from the gaslighting hands of our doctors.
we are in exact same position. Due to major digestive problems when udemedicated, my daughter cant eat until the thyroid meds get back to normal...she then ends up severely underweight and malnourished with various issues related to that including low iron...and all the symptoms that go with that (very similar to being under-medicated) This doesn't show in her haemoglobin levels, just really low ferritin and appealing transference saturation i.e 12%. The doctors have been useless and almost dont seem to recognise this as a deficiency...even though the markers are all in the red zone. For the same reasons as you, she cannot tolerate iron. At this point we have increased the iron in her diet as much as possible and bought a Childs iron supplement (halaborange aged 3-12) as it is soooo gentle as kids as young as 3 can take it. Not ideal, because it is not a huge amount extra ( 5mg if she takes two) but every little helps so they say and there seems no chance of an infusion. We will check her levels again in a couple of weeks, but some of her anaemia symptoms are now reducing. Also taking all the other necessary supplements. This time round she has also been blighted with swallowing issues which we are hoping will return to normal as she gets strong again. We have seen endless doctors, they are not helpful and we have ended up relying on sites like this to educate ourselves about this condition.
Doctors seem to understand iron and the connections to gynae and thyroid conditions so very little. They also downplay the distressing symptoms we women present, which - for low iron and hypothyroidism - are so similar, in the feeling like you are losing grip on reality / the present time type.
Meanwhile iron is frequently low in girls and women.
I wish I could suggest something more but it sounds as though you are doing well.
Are the Thyroid Trust or other thyroid organisations doing anything to push iron + thyroid as a policy issue?
she is 28..and they just never seem to join the dots. I am not down playing how serious anxiety is, but as a young woman, pretty much every symptom she presents with is put down to anxiety. Even before she was finally diagnosed with a TSH of 30, all her symptoms were put down to anxiety. Everything pointed this time to an Iron deficiency ...symptom's etc, but it was only from taking advice on here about transferrin saturation/Ferritin test etc test that we could actually see on paper what the issue was...if only for peace of mind.Literally all off the scale...but at least we know what we are dealing with now. Hopefully moving in the right direction..slow and steady..ut may need to up the iron another way if we cant get her whee she needs to be.
Please DM me if you want to. I can recommend a private endocrinologist who I have seen twice and found very good at looking at the thyroid issues.
Not so good at looking at the vitamin issues, it has to be said.
As you surmise, joining the dots is either not allowed or is just too much like hard work and careful analysis.
The ironic outcome of treating every problem as “anxiety” (ignoring the parents and the patient if they choose to) is that the medical symptoms will get worse and will end up making the patient anxious. Doing some serious harm in the process.
absolutely..it is like being gaslighted! It has actually given her anxiety because she questions how she can feel so physically ill, and it must be all in her head...then boom..on paper, there it is, in the results.. Also once you have the word `anxiety` in your notes, that is there go to diagnosis. Yes, anxiety can be crippling, but why not always explore the physical first?. Thanks for the info about the Endo...going down the private route is something we are considering if we cant get back on top of this
I truly wish we could get our heads around this problem. Is it something as simple as these people (doctors) know very little of illness itself as they have never suffered it? I know having worked with doctors, the bulk of them still come from very privileged backgrounds (or they did twenty years ago) and perhaps this shields them from real life. Whatever, it needs remedied.
my sister is a doctor who is on the verge of resigning from the NHS.
She is extremely conscientious and finds is unbelievably stressful to do the job knowing that you can’t do it to the best of your intentions and training because the systems are falling apart and there aren’t the colleagues you need to do the back-up work / clinics you need them to be at.
She’s found (this is of course anecdotal info) that when she’s flagged her concerns around patient safety, hospital managers just don’t treat it seriously enough. So eg. medical colleagues agree, after a lot of pushing back and using up of her own limited political capital, that a new doctor post is needed to cope with the demand and waiting lists. HR and managers then take over 4 months to sign off the job ad, meaning that the plan to grow the team falls behind. She is just expected to carry on as normal. She also says that older colleagues - men, typically, in late 50s / early 60s - just don’t share the need to have effective systems in place that she has. So she’s had to push to weigh and measure patients again, to take their urine samples, to make sure they are put forward for any other tests they need. Older doctors have got so used to firefighting in a crazy system - and are much closer to retirement - that when she asked one for their advice re: a patient with an unusual condition / set of facts he admonished her for asking for help saying that when he started out he asked his friends for help, not his bosses. It’s a dog eat dog world and those who want to do their job really well burn out the fastest.
Thank you for highlighting Malcolm Gladwell. Very interesting source on a number of issues and the description of American Health system (which we are being more and more exposed to ourselves). However I think our so called evidence based medicine is more our problem. Doctors (even good doctors) are tied up in this, as it turns out, historical view of medicine. They pay little attention to new research. Doctors are not even gathering the most basic information to help studies and research into hypothyroidism because they are instructed to ignore FT4 in most situations and FT3 not at all. This monitoring would cost peanuts, it’s freely available when other tests are already being done with hypothyroid blood tests. How can they say FT4 and FT3 don’t matter? They do not even know whether it matters or not!
A: Overall this is a safe procedure. There are some side effects that about 3–4 people in every 100 notice: The most common is a metallic taste in your mouth, mild flushing or feeling queasy.
Approximately 3 in 100 people who receive intravenous iron do feel some side effects, the vast majority of which are mild and self-limiting. While very rare, more significant side effects may occur in less than 10 in one million people. In a recent detailed review (JAMA 2016) it was suggested that the overall risk was similar to receiving penicillin.
My personal experiences of iron and and iron deficiency...
I have been found to be anaemic twice in my life, both times as a child. I was treated both times with a short course of iron then not tested again, as far as I remember, but obviously after all this time my memory can't be relied upon. I would get a very temporary boost from the iron then I'd end up almost back to square one.
I was in hospital when I was 13. The discharge report, which I got a copy of in my 50s when I ordered a complete copy of my GP records, showed that I was found to be anaemic while in hospital, and the GP was asked to deal with the anaemia. I don't think the discharge report was ever read. Certainly I was never treated for anaemia at the time. It was about two or three years later that I was finally tested again and was treated (briefly) for the anaemia.
I have realised (rather late in life) that when I am low in iron I crave food, particularly protein. But when protein isn't available I will eat whatever is available. When I was a teenager and had the untreated anaemia at 13 I started piling on the pounds and made my teenage years utterly miserable as a result. You know how nasty children can be to fat people. I have struggled with low energy and weight gain throughout my life, probably as a result of untreated low iron and untreated hypothyroidism. The info in this link was a revelation to me :
Doctors have very rarely tested anything for me as an adult. I would be told occasionally that they would arrange for "full bloods" to be tested, and it was only once I got a copy of my GP records that I realised this was (probably) deliberately deceptive. Most of the time I just got a Full Blood Count and nothing else. Whenever I complained of feeling weak, tired and breathless I was usually offered anti-depressants, which as any sensible person will know don't actually have any effect on iron.
In 2008 I noticed I was losing blood in my poo. It started off being a tiny amount but gradually increased. By 2013 I was losing the occasional clot the size of a cricket ball, as well as smaller clots a lot more often. I had to go upstairs on my hands and knees, resting on every step. I was very breathless. I had severe chest pain. I found it difficult to talk to people because it required energy I simply didn't have and I found it difficult to think. I thought I was going to die and treated myself with supermarket iron tablets to keep myself alive. Before I got my first prescribed iron tablets (for just a couple of months) I was taking 6 - 9 supermarket iron pills per day. I didn't know anything about iron at the time, and thought I might be killing myself with all those iron pills.
During the time I was bleeding I had been referred to three different hospitals. The first one hadn't found the cause of my bleeding and it was only when I got a copy of my GP records that I discovered that the doctor I saw decided I must be getting anxious about bleeding piles even though it was noted my serum iron was under range. As a result nobody took me seriously, and I think I probably came close to developing heart failure or bleeding to death. The chest pain I had was put down to anxiety since I wasn't having heart attacks. Chest pain is a known effect of severe anaemia and loss of blood.
The third hospital I was seen by finally discovered what was described to me as a "giant polyp with very fragile blood vessels" and they removed it. The bleeding stopped. There was no understanding, no belief, and no realisation from doctors that I had had a chronic bleed for five years, and there was no follow-up. It was around the time the polyp was removed that I (luckily for me) discovered that I could get iron supplements from pharmacists without prescription, and I could do finger-prick testing without having to beg and plead with doctors. I also discovered the BNF - British National Formulary - which gave me info on alternatives and doses and what was available without prescription. I got one prescription for two months worth of iron supplements from my doctor. After the completely incompetent and frankly cruel treatment I'd had I didn't bother seeking help from a doctor on the subject of my iron again, and have been testing and treating myself ever since.
I needed a therapeutic dose of iron for nearly two years, then went on to a maintenance dose for five years. Then I found at that time that my iron and ferritin had become self-sustaining at long last, and I no longer take iron at all. I still do a full iron panel every 6 - 9 months.
I increased my iron with ferrous fumarate 210mg, 1 tablet, three times a day, then maintained with the same supplements, one tablet per day taken for anything from 2 - 5 days per week depending on my test results. I adjusted dose if necessary each time I tested which I did, on average, every three - six months while taking iron pills. I aimed to keep my ferritin at roughly mid-range. My serum iron was always low in range even after I started supplementing.
I couldn't tolerate ferrous fumarate on an empty stomach, so I started taking it with food. I knew it would slow down my absorption but I had to get iron into me some how.
If I had my time over again I would have had an iron transfusion, possibly more than once, despite the cost. But I didn't know enough at the time. I would also experiment with heme/haem iron supplements too.
I have never completely recovered from the chronic bleed that I had. I think it went on too long and then took too long to recover from. It took 12 years to go from discovering the bleed to finally giving up iron.
Human bean, I am so sorry. Please accept this small thing, a hug across the internet.
You deserved so much better than this appalling shower of hardship and compounding sense of unfeeling from all who were meant to help you, in the face of your hardship.
If your story were a film it would be rated 18. It is hard to read it and know someone had to live through something that could so easily be remedied and do it largely alone, in a quote marks civilised country.
The knowledge you have gleaned and shared from your own shocking experiences has been so helpful in helping others. Thank you so much for the time you gave a family member. You are a 🌟🙏
I don't really have a story but here's my experience. Ferritin scrapes along at the bottom of the range. I have moved house and have a new surgery now so this relates only to a past poor GP practice. I am vegan and GP said that if I wanted a vegan supplement I would have to find it myself. That took a very long time as I didn't know where to start. I then supplemented with ferrous fumarate for 2 years with almost no improvement. GP shrugged and said the only way to resolve the problem was to stop being vegan. It's not a fad or passing fashion for me, I've been vegan for 20 years because I can no more bear the thought of animals being forcibly impregnated and then seeing their calves taken away than I could bear to see the same done to humans. Just this morning had a blood test at the new surgery and I am hoping for a supportive response - unusually on here, I believe most doctors care and work hard to do their best for us. I couldn't possibly hold in my head all the differential diagnoses that they do and have to access on the spot when a patient turns up. Best of luck in your quest for good levels and good health.
Medicine moves at glacial speed in some areas. And it seems that thyroid medication is one of them. If doctors - who do care and do do their best - just simply don’t know what is out there in terms of help for thyroid patients (as with your vegan iron) that in itself can cause major problems. I think broadly speaking I agree with your analysis of doctors doing their best, but I also look at the areas where patient activism has made huge inroads.. and wonder why doctors themselves didn’t / couldn’t instigate these changes. And why cost has got in the way of good thyroid care for so many of us!
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