History of continued low and fluctuating iron levels - advice?

[Starseed56]

hi folks. Just had my latest bloods back from helpful GP (he’s actually happy for me to sort my thyroid with Roseway! TSH barely exists) My iron is pretty abysmal tho ..

Last time i had my transferrin saturation index done it was 40% so bang on mid way. January I think it was. It’s now dropped to19% which indicates anaemia. Amazingly the GP who reviewed all my results when they first arrived said everything was satisfactory but thankfully the GP today talked thru them with me.

Haemoglobin dropped to 119 (110-150) from 124 in January.

Ferritin still woeful at 29 (5-204) but one point up on January!

Oddly my platelet count is right at the top of the range which can also indicate iron deficiency anaemia 396 (150-400)

The mean corpuscular haemoglobin test is just out of range 26.4 (27-32) again indicating iron deficiency, and the MCHC is also out of range 315 (320-360) same indication.

My ferritin had been low for years I have just discovered in 2016 it was 14 and no one told me at the time! At least it has now doubled.

I’ve been unable to take iron (I bought three arrows as suggested here) as my serum iron was over range last time at 29 but my latest serum iron is much lower now at 12.7 (7-26) the Gp advised that serum iron results depend on how much iron you’ve eaten in previous couple of days and don’t indicate long term level.

B12 has risen as I’m taking the Thorne complex (I stopped a week before test) it’s now 577 (189-883)

Since my serum iron has dropped and is apparently not so significant as it changes, I’m resuming the three arrows iron.

QUESTION should I take 1 or 2 the pot says take 1-2! I suggested to GP I could have an iron infusion but he wanted me to take iron first and see what happens in four weeks. Not sure I can carry on buying the three arrows tho it’s pretty expensive and I also have to fund my NDT!

Not surprisingly I’m pretty tired and my body hurts. (I also have fibro) Feedback much appreciated re the iron profile. I’d say I’m a poor convertor/absorber and have been most of my adult life. I’m now in my late 60s and it feels like it’s all catching up on me. I’ve gone back to eating beef after nearly 40 years a veggie, I can’t say it’s helped much. Need to do the chicken livers some more 😝 and actually make my own as shop bought has low level of chicken liver. Thank you for reading apologies it’s lengthy 🙏💜

[SlowDragon Administrator]

Looking at previous post

Why not take levothyroxine plus small dose T3

It’s more flexible and way cheaper

Thybon Henning 20mcg T3 - £60-£80 per 100 tablets

Typically daily dose is 5mcg either twice or 3 times per day

cutting 20mcg tablet into 1/4’s

Then you can adjust Levo dose separate to T3 …..and still get Levo on NHS

You might eventually get T3 on NHS too

Over 65,000 prescriptions in England in last year (and increasing year on year)

openprescribing.net/analyse...

[Starseed56 in reply to SlowDragon]

Hi SlowDragon

I’m waiting for an nhs endo appointment where I’m hoping they will put me on a T3 trial. I did speak to Roseway about this but was persuaded to take their compounded NDT being more natural. As you said I have thought of this and you’ve put it back into my mind so maybe for the next dose I will switch if I’ve not seen endo by then. Will that help my iron levels in any way or did you suggest for financial reasons?

May I ask why is the T3 dose broken down into multiple doses, is it because it has a short life in the body? Are the tablets easy to cut?!

I had hoped the GP would give me an infusion but perhaps the three arrows will do it’s job. Do you suggest I take 1 or 2?

Thanks 💜

[SlowDragon Administrator in reply to Starseed56]

NDT is no more natural that Levo or T3

They are all manufactured and contain fillers

Yes T3 is short acting. So many people find it best to split the dose …..wether on T3 or NDT

Even if you find you do better on single dose, day before test ALWAYS split as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test

NHS appointments. Typically wait is 12-18 months

Vast majority of endocrinologists are diabetic specialists and useless for thyroid

Have you asked for referral to a specific named thyroid specialist

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

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

Iron/ferritin may improve as low Ft3 increases

Low Ft3 results in low stomach acid, poor nutrient absorption and low vitamin levels

[Starseed56 in reply to SlowDragon]

Hi Slow Draon. my T3 is now 6.1 so the NDT has worked where T4 alone did not! It’s only been at this level for 2/3 months so I’m guessing my body has a lot of catch up to do…

The current NDT has no fillers other than rice flour. I will next time try T3 as I’ve previously pondered and revert to Levo for T4. I’ve three months of expensive NDT to take first!

I’ll check the list and see who’s available in my area. As I’ve written a while ago if I can’t get T3 prescribed I’ll take my case to the ICB as one of my gene tests suggests poor conversion. Thus not prescribing me T3 could be deemed medical negligence!

Thank you 💜

[SlowDragon Administrator in reply to Starseed56]

Roughly where in U.K. are you

Some ICB areas worse than others

Searchable data here ….by ICB or by GP surgery

openprescribing.net/analyse...

Yes I got T3 prescribed on NHS after presenting Dio2 gene test and private endoscopy confirmed severe gluten intolerance. More on my profile

[Starseed56 in reply to SlowDragon]

East Kent. So no hope 😲😂 ironically my old health authority area is near the top of the list but I shall not give up!

[helvella]

As cost is an issue, you just might find that taking one Three Arrows a day plus another iron supplement would be viable.

By doing that you can keep you non-haem intake somewhere between zero and the most you can take without side effects. But with the haem, have a greater total iron intake.

This might be less than optimal - but also might be better than taking only (for the usual example) ferrous sulphate.

helvella - Iron Document

This is a summary of what I have read up and found out about iron supplements over the past few years. I am not in any way medically trained. You are strongly encouraged to check every detail before making any decisions for yourself.

Last updated 02/04/2024

helvella.blogspot.com/p/hel...

[humanbean]

I have a history of repeated anaemia, constant tiredness, lack of energy. I hardly ever got tests for iron or ferritin from my GP. They just kept prescribing anti-depressants which did absolutely nothing to fix anything.

One thing I have problems with is that while my ferritin might get low or deficient my haemoglobin always stayed (just) in range (at least as an adult, I was diagnosed anaemic as a child). Since my haemoglobin was in range I wasn't diagnosed as anaemic or iron deficient and getting treated was nearly impossible.

The thing that changed everything for me was discovering that the iron supplements doctors prescribe can be bought in UK pharmacies without a prescription. And I can do finger prick testing privately without needing GP permission just to get an iron panel done.

So I started treating myself. I didn't know any better at the time but I stuck to using ferrous fumarate 210mg (FF210) at maximum dose (which is higher than the maximum dose now). I was taking 1 tablet 3 times a day. To raise my ferritin to mid-range took nearly two years. My serum iron stayed very low. Once I got my ferritin to mid-range I decided just to maintain it there, and see what happened to my serum iron.

I took FF210 for five years at a maintenance dose before my serum iron started to rise. Once my serum iron and ferritin were at a level I was happy with I stopped supplementing iron.

If I had my time over again, knowing what I know now, I would get an iron infusion done privately to start with then I would do regular iron panels every three or four months to see what happened to it. If my iron/ferritin started to drop below optimal again I would start treating myself with iron supplements at a maintenance dose.

I think if iron is particularly low some people need to repeat their iron infusions, but if paying privately for that I wouldn't be able to afford them more than once and I'd have to rely on FF210 and heme supplements permanently.

I only wrote this post to make the point that raising iron in people with chronically low iron and poor absorption can take a very, very long time.

[Starseed56 in reply to humanbean]

Thanks humanbean i really appreciate your reply and reading your story. I think my history is similar to yours. I was first diagnosed anaemic not long after I began to give blood at age 18 ... in earlier years it was iron deficiency anemia but this changed unbeknown to me. So I’d ask for the test via GP annually and usually be told you’re not anaemic end of story. Except it wasn’t end of story for me and I couldn’t understand as I was so tired. Recently I got to see some of my notes. In 2016 ferritin was 14, I wasn’t told. In 2018 it was 16 I was just told take some iron (used floradix in those days) but never did any medic mention ferritin to me, ever! I really only began to grasp more when I joined this forum last year. Tho I joined for thyroid I’ve learned so much about iron complications. I believe if I’d discovered this years ago or if someone had taken the time to go a bit deeper with me, I wouldn’t be exhausted and in so much pain now! I could weep but that won’t accomplish much so now I have a better understanding and a locum doctor who seems supportive, maybe I’ll get somewhere and I also took from your post how long this can take. I still think an infusion would be helpful as a booster to start but I will wait and see if a month on Three Arrows helps at all and take it from there.

Once again thanks for your valued input 💜

[humanbean in reply to Starseed56]

You're welcome.