The liquid spray & other iron tablets don’t help. I’m constantly going back n forth for blood tests before they will give me back the strongest iron tablets again. This happens every four months and has gone on now for years. I’ve been getting very bad upset stomach now and struggling to get outside due to this and other symptoms. ? My iron got quite low at one point and a private doctor said it was anaemia but my primary Drs argued it wasn’t actually anaemia because my full blood count the red blood cells were fine.
Would it be better to get injections? Is that even possibleHow can I convince endo & Drs?
As soon as I stop taking the tablets. I get poorly again. I get awful restless leg syndrome. Driving me insane!!! Literally!!!
I also need to start taking folic acid, as my knees start paining me. Struggle getting upstairs. I’m fatigued, hair falls out, nails break et cetera.
what can I say to convince the endocrinologist and doctors to give me injections. If that’s possible? And stop the roller coaster, of constant dr appointments and asking
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Poor absorption of iron is common amongst members of the forum. One of the problems that patients have is that doctors usually seem to give up prescribing as soon as the ferritin level is in range or when the first prescription needs re-prescribing.
Iron supplements are renowned for causing gut problems. What iron supplements were you taking and at what dose?
One bit of good news is that, if you can afford it, you have a lot of choices for self-treatment.
When I was taking iron for a long time I was taking ferrous fumarate 210mg. I ended up taking ferrous fumarate 210mg for 7 or 8 years in the end. I needed various doses depending on my progress. I couldn't tolerate iron supplements because of severe gut pain, so I had to take the supplements with food. This obviously reduced my absorption, but enabled me to carry on taking iron for a long time without lots of damage being done to my gut.
Options for self-treatment, all of which can be bought from pharmacies in the UK without a prescription, if the pharmacist approves. If they don't approve just go to a different pharmacy.
There are private clinics around the UK that will do iron infusions for people who pay privately. (Search for "iron clinics".) I don't think any of them require a doctor's referral. They are expensive compared to the iron salts. I can buy a pack of 84 tablets of ferrous fumarate 210mg from a UK pharmacy and get quite a bit of change out of £10, but infusions cost a few hundred pounds.
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Be aware that iron and ferritin should not go over range. If either of them go above range then you should cut down or stop supplementing for a while, and ask for more advice from the forum.
Doctors would usually prescribe 2 or 3 months worth of iron supplements for me when I was anaemic or iron deficient, and then would never re-test my levels. I'd been badly anaemic for a while and when I discovered I could get iron tablets without needing a doctor's prescription I decided that I would fix my own iron and ferritin. It was far easier for me when I didn't need to beg and plead for iron pills. I usually aim to keep my ferritin around 100 micrograms/L. In years gone by my doctor thought I should be happy with a level of only 20 mcg/L. And every time I ran out of iron pills my ferritin levels would drop like a stone.
And another thing to be aware of is that too high a dose of iron will actually slow down or stop absorption because the body "blocks" it with a substance called Hepcidin that is produced naturally by the body to protect it from overdose.
If you do a search for the first named researcher - "Nicole U Stoffel" - combined with "iron" you'll find quite a few references to the "every other day" method of improving iron absorption. I don't actually know how well it works in practice but it has been mentioned online many times. I've never tried it because by the time I read about it I was almost optimal in my iron results so I didn't change anything.
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If I was trying to make drastic improvements in my iron and ferritin now, I would try Heme Iron supplements (Three Arrows) first, then if they didn't work well for me I would save up for treatment via an iron clinic. I would only use iron salts if I was desperate.
Some people find that having optimal levels of B12 and folate actually improve their iron absorption . To improve B12 use methylcobalamin, and to improve folate use methylfolate, starting any folate supplements a week or two after starting B12.
That is the usual iron supplement prescribed by doctors in the UK, probably because it is the cheapest available on the NHS. It is very poorly tolerated and causes gut problems for many patients. When I tried it I felt, after just one tablet, that I had swallowed a strong acid and my stomach was burning. I do remember reading just one post from one person who seemed to tolerate it, but that was a long time ago. She was definitely very unusual!
I remember one person saying they took ferrous gluconate 300mg and did well on it. The dose for this particular supplement used to be up to 6 tablets per day in divided doses. Obviously you could try just one or two tablets every other day and see how you get on, but I've never tried ferrous gluconate at any dose, so have no idea how well tolerated it is.
If you want to stick to taking one of the iron salts, which are cheap and easily sourced in pharmacies in the UK without prescription I would suggest ferrous fumarate 210mg (FF210), which is what I used. There are ferrous fumarate tablets with higher doses but the higher the dose of iron in any iron supplement the less likely they are to be tolerated.
For what it's worth, once I started taking FF210 at maximum dose I aimed to get my ferritin level up to mid-range. My serum iron hardly moved. It took 21 or 22 months to get my ferritin where I wanted it. Then I reduced dose and just aimed to maintain my ferritin level where it was. Bear in mind the "every other day" advice didn't come out until several years after I started supplementing FF210.
I continued supplementing at a dose which maintained my ferritin at mid-range for five years. testing every few months. Eventually my serum iron started to rise. Once that happened the rise was quite fast in comparison to my earlier experiences. I continued to supplement at a low dose for approximately another year, then I gave up iron altogether. I still monitor my iron and ferritin levels with an iron panel a couple of times a year. I always keep a box of FF210 at home because I take a single tablet when I get cramp.
When raising my ferritin, and before my serum iron started rising, I did discover that I could raise my ferritin above range. But my serum iron never budged for seven years. Stopping supplementing would make my ferritin drop like a stone.
If I had my time over again I would do things differently in the hope of improving my ferritin and serum iron a LOT quicker!
I don't know if any of the above is helpful to anyone. I was making the point that raising iron and ferritin can take a very, very long time, while patients are usually only prescribed 2 - 4 months of ferrous sulfate at a time then their levels drop - again and again and again. In my case it took 7 or 8 years of supplementing at various doses and regular testing before my levels stopped dropping like a stone every time I stopped taking iron.
Again very grateful for that information. It is extremely helpful. Thank you!!!
I’m seeing my endocrinologist on Friday. I’m writing everything down that I want to say.
And I’ll ask her to write to my primary Drs for a constant repeated prescription to hopefully stop the roller coaster, and a change of iron from possibly the sulfate to the ferrous gluconate).
I’ll have to make a formal complaint, in writing if they don’t help me. That’s all I do is write complaints. 😀
I haven’t left the house in 5 months because of a lack of sleep. I’ve been taking amitriptyline medication to help me with pain and sleep, due to Adenomyosis, restless legs, jumpy feet, and now a constant upset stomach. Practically housebound since 2014. And recently thyroid eye disease. It’s a flipping nightmare.
I’ve been waiting for five months for my review appointment, with the endocrinologist, which is not good enough, they only do a morning clinic.
Restless legs could be due to low levels of various nutrients. In my own case I keep iron tablets in stock, plus I take a combo magnesium supplement contain magnesium glycinate, malate and citrate. I also get help from vitamin D, potassium, and salt (for the sodium).
And please moan away. In almost every interaction I have with doctors I find myself moaning afterwards.
Haha yes having all these symptoms you soon learn that Drs are only human and are not up-to-date as some of us.
I’ve been taking magnesium vitamin D for years. My potassium went low with steroids, but it’s okay now. I take iron spray and for a globin all sorts of iron tablets over years. I’m gonna ask my doctor though if I can change
I use ferodyn by Nutri advanced and no problems with stomach. I tried three arrows first due to it being mentioned here but it did not agree with me and I had no increase in iron after using it for 3 months.
Have you been checked for B12 deficiency which can lead to pernicious anaemia. B12 deficiency causes problems with balance, dizziness and can cause falls. In Sally Pacholok's book about B12, she details how when she worked in a hospital A&E as a nurse, she frequently had older people coming in following falls. They'd do investigations and be puzzled because they couldn't find a problem but they never tested for B12. If she suggested they did (she had PA) she was pretty much told to butt out. In some cases where she sneaked it onto the blood test request it came back showing a big deficiency. It's always worth checking. The first my sister knew about having PA was when she fainted in her bedroom, her levels were dangerously low when the GP tested. Straight on to injections.
I do ask every 4/6 months and get my b12, vitamin D, ferritin checked. Last blood test it showed borderline. Serum ferritin level 20 ug/L [10.0 - 322.0 In December.
Serum folate level 5.8 ug/L [5.4 - 24.0 borderline but Dr refused me the folic acid medication, which I’d previously been prescribed, even though I said it stated in the blood test, ‘borderline’.
I advised the Drs that I get really poorly knees and I can’t get up the stairs. I was still refused.
Bought my own folic acid tablets . I’ll take double (but 2 nd Dr did offer me another blood test which I need to go get.)
That’s what I’m sick and tired of is having to get the blood tests to prove that and it’s the waiting game. By the time I manage to get a Drs appointment, go for the blood test, wait another week for results, I’m poorly and weak again.
I eat a really healthy balanced diet, full of greens etc so shouldn’t really need extra vitamins & mineral’s but I take them anyway. I take vitamin D sprays 40000, iron spray and magnesium tablets but if I stop get very low again.
Drs have argued that I’m not actually aneamic but feel like I am as I get so poorly. I still can’t believe how poorly, weak and achy I feel. I’ll have to copy and paste this reply and give it to my endocrinologist. 😃
I've had an issue with iron levels for most of my adult life. I had several iron transfusions which honestly didnt keep my levels up for more than a couple of weeks (they also didn't make me feel any better).
As part of my hashimotos diagnosis I found out that my B12, folate and D levels were also very low. Since I have been taking supplements to address those my iron levels have started to increase, still a way to go but better than I have ever had. Also, I have had gut issues which I have been helping with increased fibre, kefir, probiotics etc which may also be part of the improvement.
I do ask Drs and endocrinologist to check my vitamin D levels, b12, ferritin and folate and I do ask regularly.
My B12 levels are usually always normal. And my vitamin D is a lot better than it used to be, from years ago, but it does keep going low.
I’ve just got over TED‘s disease (thyroid eye disease) and I’ve got Hashimoto’s.
I was previously taking steroid meds for teds disease, which depleted a lot of my vitamins. I’ve had to start building up my levels again.
I do try to eat a healthy diet with lots of veg, fruits, nuts, seeds, spinach, kale, kefir, lentils, beans, you name it I try and eat it😀 still get low levels.
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