I discovered I was iron deficient (absolute) a year ago which returned after stopping ferrous sulphate (on gp’s rec). I’m supplementing again after being told I couldnt have an infusion or injection as they are no longer advised due to adverse reactions.
I don’t have thyroid issues that I know about (according to a full thyroid panel) or coeliac disease but I do have ME & the iron deficiency’s having a big impact. Hence asking for a quicker, more reliable delivery method to tablets.
When I enquired also about investigating the cause of the deficiency, (apart from dietary wise) the gp said that as it hasn’t stopped my periods there is no need to.
My concern is that something may go undetected that may be actively contributing to my chronic fatigue /ME, RLS & sleep disorder.
Any thoughts would be greatly welcomed
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Can you add your most recent Full thyroid and vitamin results
Persistently low vitamins often caused by being hypothyroid, as we frequently have low stomach acid
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test other vitamin levels and thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thanks for your reply & advice - I just spent ages replying in full only to realise that I’ve replied to myself? I can’t seem to access this reply though. Just wanted to check if it’s visible to you and others who replied?
Just to clarify, did you have an adverse reaction to an iron infusion? Or is someone fobbing you off with an excuse? It can take ages to raise levels using iron tablets so it seems unnecessarily cruel to insist that’s the only way you can do it.
But I’ll admit I’m not up to date with whether or not iron infusions are a good idea. I know that someone I work with regularly has them and that she hasn’t been told she can no longer have them.
As you say Slowdragon I followed advice from Thyroid UK & this forum including Marz & the PAS.
I was tested for everything you recommend via my GP & then via a functional medicine doctor hoping she could treat me for any possible thyroid or Hashimotos issues detected, even subclinical ones (as I also suffer from depression & wondering if a factor).
All thyroid (extensive not just gp ones) tests came back “normal” & the functional doctor felt that treating me for subclinical thyroid was not in my interests. Plus her costs became too prohibitive to maintain & I was wary about blindly self supplementing with any synthetic thyroid products.
I can’t post any results (all paper copies) as they’re not where I’m staying atm (with family due to being incapacitated) & support bubbling.
B12 was in the 500’s & IFAB negative . Given my clinical picture & presence of neurological probs (carpal tunnel like probs, RLS, PLMD) anaemia (absolute iron deficiency) in line with the guidance I requested a trial of B12 injection. This was declined (vehemently!)
I was next planning to try B12 lozenges (not tablets to bypass digestion) to see if my symptoms improved but decided to wait to see what difference supplementing iron would make as I wanted to know what any improvement could be attributed to what change, step by step (unsure if this is advised as it has been over a year now & obviously potentially damaging not taking! It’s a bit of a minefield. How else do you know what is attributable to what?!)
I was found to be Vit D deficient & am on a daily supplement for life prescribed by gp - name escapes me.
All other vitamins came back “normal”.
Helvella I have had a read of your post & links to iron deficiency esp the best types of iron for absorption which is really helpful.
My diet has suffered (I’m not vegetarian or vegan) due to the fatigue, depression vicious circle of poor self care but after supplementing with iron I did feel a noticeable improvement, including to RLS. I have improved my heme iron intake & diet in general but it could certainly be improved.
I’m just concerned that my iron has dropped back down so quickly after stopping supplementing. Which helvella your articles say is very common.
I did wonder if I was being fobbed off Jazzw by my the gp. I’ve never had an infusion - hence my query if this is standard practice. Obviously Covid plays a part ATM but the GP did not say as much.
I will see if they will reconsider as its a struggle waiting for the iron to take effect.
I was concerned that she said that because I’m still able to have periods - that investigating the cause of my iron deficiency is unnecessary??
Again this did not sit right with me hence my query on here.
Slowdragon I plan to retest my thyroid (all the tests) by private self test as all ones I’ve had have not been on an empty stomach 1st thing in the a.m. However because all results came back in the healthy range none borderline - I took it that they were pretty conclusive. I will post back on this.
I have read that gastro issues should be looked into if iron deficiency exists so I will request again with the GP to investigate further.
Just wondered if anyone else has been told the one about still having periods??
Thanks for the help it’s greatly appreciated & well wishes to all 🙏
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL blood tests, as biotin can falsely affect test results
Low ferritin by looking at improving iron rich foods in your diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
Thank you Slowdragon for such comprehensive advice.
I’m taking 1 x 800iu Colecalciferol (Invita D3) daily as a maintenance dose for life under the GP.
This was after 6 weeks of intensive therapy. I had a check to ensure my calcium levels were ok about 3 months after supplementing.
I have a blood test in a couple of weeks to check & have requested a full thyroid & antibody panel. If not I will get what I can via nhs & the rest privately.
I had read about magnesium & Vit K2-MK7 but not supplemented yet so will start on that.
Advice on B vits is really helpful too which I will start on ASAP.
I will post proper results in due course with heartfelt thanks again
(In the UK) You can buy prescription-strength iron tablets without a prescription in pharmacies. Theoretically the pharmacist can refuse to sell to you, but if that happens you should just go to another pharmacy and ask again. I've been refused just once - in Boots - which is why I no longer try there. Normally I buy my iron supplements in Lloyds, Tesco (at the pharmacy counter) or in independent pharmacies. I normally only buy one box at a time (which contains 84 tablets).
As you've already found out, anyone who loses iron or fails to absorb it well enough from the diet can end up with iron levels going up with supplementation then dropping, going up then dropping, over and over again. It doesn't help that doctors usually stop prescribing after just one or two prescriptions.
I used to have very low in range ferritin and below range serum iron. I got one prescription for ferrous fumarate 210mg from my doctor after I begged (I distinctly remember it being slammed on the table in front of me while the doctor scowled at me). When I took the prescription to the pharmacy I found out, by a complete fluke, about being able to buy them without prescription. I immediately decided that I would learn how to get tested and how to interpret my own iron testing results.
I was taking the maximum dose of ferrous fumarate 210mg (1 tablet, 3 times a day) for 21 months before I got my ferritin to mid-range. My serum iron was still low. I then spent a very long time with my results swinging up and down as I tried to find the right maintenance dose for me. I've finally got there, and now I take 1 tablet, 5 days a week.
It's interesting to note that the balance of my results for iron, ferritin, TIBC, transferrin saturation is now much, much healthier than it was 7 years ago when I first started on my journey to improving my iron.
If you can find out your results for an iron panel then you can post them here and ask for feedback. You can also, if you can afford it, buy a fingerprick test for an iron panel here :
It's worth registering to receive emails from testing companies because they then tell you about their special offers and you are less likely to miss them. It is also worth knowing that you can buy a test kit and wait a few months before using it (but check the packaging for an expiry date).
That’s helpful to know that I can purchase prescription strength OTC as the GP is clearly going to get sick of me requesting to continue to supplement once they think my levels are satisfactory.
(I have already have to fight for them to accept that my levels need to be at the higher end of normal or 100-150 as suggested by the neurologist for my RLS. My GP rubbished this and said I would be fine at around 50 & should stop then....why?? When even another medical professional who is possibly more specialist in that particular area requests this as a matter of priority??)
I digress! Especially if it takes as it did for you that long to get to mid-range. It’s really helpful to hear others’ experiences of this & that maintenance is required.
I will post iron panel results when I get them & focus on trying to improve the deficiencies & especially through my diet too.
I looked at some earlier posts of yours & discussion re optimising nutrition & the importance of this for thyroid help (as slowdragon has said too).
Useful to know re medichecks too - will help me get into the swing of regular self testing - something that I’ve wanted to be guided by “professionals” on if am honest, fearing I may misinterpret results or waste money, but it really seems I have to take the plunge & ownership of my health. That feeling of helplessness is immediately dissipated coming on here & having reasonable sensible discussions with people who are knowledgeable about their conditions & willing to help - if only the same could be said for the medical profession!
Anyway I’m ranting! Appreciate the advice & will feed back as & when.
I digress! Especially if it takes as it did for you that long to get to mid-range. It’s really helpful to hear others’ experiences of this & that maintenance is required.
People absorb iron at different speeds. Some people will fix a low level in 6 months, other people can take a year or two, some people can never optimise their levels. The only way to find out is to try it but test regularly throughout the process.
Right. I have an increased need for it - well it needs to be 150ng/mL for Periodic Limb Movement Disorder which prevents me getting refreshing sleep.
I have not got it anywhere near that mark because my GP disputed this level (despite both sleep consultant & the neurologist requesting it) & said 150 using their range equates to her 50 so to supplement for 6 months then stop.
Which I stupidly did. Hence my query re iron infusions & if they are ever given. I was told not by GP. FWIW I requested a 2nd opinion but won’t hold out too much hope.
So have signed up to medichecks ordered my 1st tests & don’t really need to rely on GP for information or answers on me.
Aiming for a particular level only makes sense when you know the reference range.
I once had a ferritin result of 68 which was 14% of the way through the range. The next test I had showed a level of 51 which was 28% of the way through the range. The reference ranges were wildly different for the two tests, and the percentage through the range was more informative than the actual number.
When you get the results of your new tests post them and the reference ranges in a new post and ask for feedback. Good luck.
Every time you get a test done - whoever it is done by and whoever initiated it - the result should always, always, always come with a reference range. Any result is meaningless without one. A test result without a range is essentially just a random number.
We can't choose which reference range we want to apply to our results. It always has to be the range which came with the actual result.
I was found to be Vit D deficient & am on a daily supplement for life prescribed by gp - name escapes me.
I’m taking 1 x 800iu Colecalciferol (Invita D3) daily as a maintenance dose for life under the GP.
This was after 6 weeks of intensive therapy.
In your shoes I would be curious about two things. Did the initial intensive therapy actually optimise your vitamin D levels or were they still below optimal?
And I also wonder whether 800 iU per day of D3 is going to maintain your level. My levels drop noticeably if I take less than 2000 iU per day, and some people on the forum take as much as 5000 iU per day to maintain their levels.
You can test your own vitamin D with a fingerprick test - buy a kit, follow the instructions, and send the blood back to the lab in the post :
I had it checked at the beginning of lockdown & didn’t ask for a copy of my results because I didn’t want to make any demands on the practice during that time. So I had a text to say all fine.
So I took their word as read & for some reason thought that I must be on a high daily dose because it is being prescribed. Just looked at the calculator though and 800 doesn’t look anywhere near enough.
I’m having a bone & thyroid panel in a couple of weeks so I will check what it is then & then I can look at additional supplementation.
Supplementing VitD yourself is not expensive. As it seems you have absorption issues it could be helpful to use the under tongue sprays by Better You to avoid stomach. One also contains VitK2-MK7 - an important co-factor along with Magnesium. Amazon has plenty of choices !
I doubt your GP will re-test VitD or do the correct thyroid tests - they think testing just the TSH is enough- IT IS NOT ! I am currently taking 8000 iu's daily - lots of research now on Grassroots Health about SarsCo 2 and VitD.
Some surgeries now have on-line access to records and test results - so worth enquiring. So important to obtain results with ranges so you can monitor your progress and check what has been missed !
The spray sounds good. I’ve been reading up more on how K2 is essential to get the calcium to the places it needs to be (bones etc) rather than being stored elsewhere (heart etc).
And you’re right - when my GP said she would do a bone profile I assumed Vit D would be part of that but it isn’t.
So will test myself as you recommend.
Wow 8000 iu per day of Vit D really puts it into perspective how much we vary & how the one size fits all approach is so off.
There is a lot about Vit D & Covid ATM - will have a read.
I did email a request & listed all thyroid tests for my GP to include which she approved, so we’ll see when I go to collect the form if she’s stayed true to her word!
Online access would be great. Going to check out if they do. Then there’s no excuse!
Sadly your GP may order the tests you request - but the labs will not comply - SIGH ! Good luck ...
PS I take high dose VitD in winter as I also have/had Crohns. Low VitD is implicated in auto-immune conditions as well as some cancers. As so much illness can start with the gut and inflammation it makes sense. VitD is a steroid like anti-inflammatory - so much more than a vitamin. I was living in Greece until recently and still needed to supplement !
Oh really? Ok so I might as well get everything done independently of the gp. What a waste of time they are!
That’s interesting re Vit D & autoimmune disease. My sister has Crohns & coeliac, brother coeliac, mum PA. I have ME but I think there’s def an autoimmune connection.
Crazy having to supplement with all that sun in Greece! I saw from your profile Crete? How wonderful- I’ve really fond memories of visiting as a kid. Kind of blew my mind.
Different climes here! When I lived in a warm climate however I did actually miss british weather! Not so sure now...
It could be an idea for all the family to have the correct thyroid testing. TSH - FT4 - FT3 and anti-bodies TPO & Tg. Medichecks have Special Offers on Thursdays and a post here from Admin will flag it up ! I am also on the PA Forum and there are quite a few members who have Hashimotos and PA. So worth ruling out. Hashi's can also be linked to Coeliac and then the LOW T3 linked to ME/CFS and 100's of other symptoms.
A book worth a read is by Dr Barry Durrant-Peatfield - now retired - his book is very helpful . I saw him many years ago - as have many here. The Thyroid and How to Keep it Healthy is the title - with a chapter on CFS/ME.
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