What to do if GP 'not bothered'!? Ferritin + Hashimoto's

[thyr01d]

My ferritin level always scrapes along the bottom of the range but GP and endo are unbothered. I'm on T3 which I think I might not need if ferritin was mid-range and I could convert Levo but even that doesn't motivate the doctors to help. I imagine (?) they are thinking: "well you're a vegan, just eat some meat, it's not our problem if you are faddy". Also, when I was prescribed ferrous fumarate and took it for 2 years there was very little increase in my ferritin level, which is I think really why doctors don't even discuss it now.

I don't know what to do and wonder if it's just wishful thinking that I could swap T3 for Levo.

Please could I have your thoughts and advice? Thank-you.

[Hidden]

My GP was also unbothered by my ferritin and wouldn't run an iron panel. In the end, I did a private iron panel and went for a private iron infusion.

A ferritin level below 30 is considered deficient, your GP and endo are negligent if they're not addressing it.

[thyr01d in reply to Hidden]

Hi Witchinghour, I love your name, and have some super paintings in my cottage of witchy cats, moon hares and such like, not to mention a besom outside. Anyway, thanks for your reply. Did your infusion make much difference to you?

[Hidden in reply to thyr01d]

It was a slow burn. I was hoping to feel immediate results (!) But it was probably 12 weeks later when I realised I wasn't gasping for air anymore.

I'd do it again in a heartbeat. *Edit to add I'd probably try and find it cheaper. 😂

[humanbean in reply to Hidden]

How much is a private iron infusion?

[Hidden in reply to humanbean]

I've just checked and it was £680 all in. Which blows my mind. I can't believe I ever paid that much... Chucked it on the credit card and spent a year paying it off... The things we do when we're desperate to get well... !!

It was £200 for the consultants fee and £480 for the infusion.

[humanbean in reply to Hidden]

I had extremely low iron (it was below range) and low in range ferritin caused by a long-term GI bleed. At the time I had never heard of iron infusions or paying for medical treatment without involving GPs. I was a victim of my own ignorance.

I raised my iron with iron tablets and it took nearly two years for me to raise my ferritin to mid-range (iron was still low in range).

If I'd known I could get an iron infusion before I started the tablets I would definitely have gone for it. My metabolism and my energy levels have never recovered. If I'd improved my iron and ferritin much more quickly I might have felt a lot better now.

I really don't think you should doubt yourself after paying for the iron infusion. I think you almost certainly did the right thing for your long term health.

[Hidden]

My advice for what it’s worth is to ask to be referred to an endo. You also have the option of a second opinion from another GP in the practice x

[thyr01d in reply to Hidden]

Hi MorecambeBay and thanks for your reply. I am already under an endo who at first talked about a transfusion but was concerned about the risks and decided against it. I think asking for a second opinion would put my GP's nose out of joint and we've both worked hard to establish a good relationship after a bumpy start so I'm reluctant to do that.

[Hidden in reply to thyr01d]

I can understand that. Good working relationships with doctors are important.

I’m not sure that an infusion is not the only answer. Oral supplementation ?

[fibrolinda]

How much ferrous fumerate did you take and did you take vitamin c with it?

[thyr01d in reply to fibrolinda]

Thanks for your reply Fibrolinda. Can't remember how much but it was prescribed so I'm confident it was enough, though I've recently read we need to have a day off in between taking it. Yes, I did take Vit C with it, and, avoided tea/coffee/chocolate within a hour of meals and took the iron 4 hours away from thyroid meds.

[fibrolinda in reply to thyr01d]

I took 210mg 3 times a day for 6 months with 1000 vit c each tablet, then 2 times a day for 4 months then once a day for 4 months. Once a day had levels drop again so back up to twice a day for, eventually 6 months finally got my levels to reasonable level then had to reduce to 14mg 4 times a week which keeps my levels in decent place. Regular testing of Iron status throughout. Dropped to twice a year and now once a year.

[thyr01d in reply to fibrolinda]

In other words you were at a reasonable level after 2 years but my body barely improved in 2 years. The mystery seems to be why - why do I remain at the bottom of the range after 2 years of medication?

[RoboTh in reply to thyr01d]

I too have a dire ferritin but couldn't tolerate oral iron I tried for years and ended up on a paediatric dose which did nothing. I saw a locom gp as I felt awful, poor hair nails eyebrows and he referred me to gastro. I was offered an iron infusion which was amazing (after the first week of feeling terribly nauseaus) literally like a bolt of lightning. Lasted a year then dropped by down to <10. They reluctantly gave me another infusion but I think I'll struggle to get a ,3rd on the NHS despite ferritin being <10 again right on schedule 12 months post infusion. 2nd infusion I wasn't as nauseas and it did help but not a big of a leap in terms of energy as the first. No one in my mums family can absorb iron from their diet or supplements and have a lot of auto immune problems x hope this helps. They refer to gastro to rule.out absorption issues. I had a endoscope and stomach ct scan (normal) (reflux)

[Tinacros in reply to RoboTh]

This sounds like my daughter. Hopefully she will get an infusion. She has autoimmune issues too x

[thyr01d in reply to RoboTh]

Thanks RoboTh, I'm sorry to hear of your problems, not sure where we go from here, how about you, any ideas?

[RoboTh in reply to thyr01d]

Persist with gp reporting symptoms mine went ignored for years I thought I was depressed. I'm really hoping they'll give me another on nhs

[Tinacros in reply to thyr01d]

This is the same with my daughter. She’s been referred to gastroenterologist to check absorption issues. But that was she’s ago. We are still awaiting an appt. Plus the iron eventually made her have impacted feaces too so she’s had to stop them and is on laxido to try and sort her out 😕

[thyr01d in reply to Tinacros]

Good luck to your daughter,

[fibrolinda in reply to thyr01d]

I just have some doubt as to how much you were prescribed as you don't remember... Often seems to be once or twice a day dosage from GP which would not have improved my levels. I needed the high 3 daily dose to saturate(only word I can think of) my system before I could lower to twice daily. But if you are sure it wouldn't work for you then you really need to push for iron infusion. Find out your iron status, if gp won't, well personally I would put in writing why you believe you need iron infusion and insist it goes on your file. You can do private test via medichecks to find your levels yourself, and certainly before any high dosing. medichecks.com/products/iro....

Anyway, just my thoughts, good luck, fingers crossed for you.

Linda

[thyr01d in reply to fibrolinda]

I am reluctant to push for an iron infusion because first the GP will insist on invasive tests which I don't want, and, I don't think I do have an argument for an infusion since although I am at the bottom of the range I am not below range. I was on a good dose of iron, I checked at the time and looked into it.