ferritin still low

[Pennypingu]

As mentioned before my ferritin is 13, can’t tolerate any oral form and have had infusions in the past. Am being denied infusion as Full bloods are within range, no idea what to do now, eating plenty of iron rich foods, feeling really unwell and down.

Recent test results: B12=651(187-883), vit D=92(50-200), folate=7.1(3.1-20), ferritin =13(5-204)

Haemoglobin concentration 130 (115-160),

Total white blood count 6.85(4.0-11.0)

Platelet count 327(150-450)

Red cell count 4.45(3.8-5.8)

Haematocrit 0.407(0.35-0.47)

Mean cell volume 91.5(84-102)

Mean cell haemoglobin level 29.2(27.0-38.0)

Haemoglobin concentration 319(300-350)

RDW-CV13.0(11.0-15.0)

Total thyroidectomy in January, last bloods TSH 2.7 (0.35-4.9), T4 12.3(9.1-17.6), T3 3.4(2.4-6).

[pennyannie]

Hello again :

I don't understand iron - and am upset reading how you have and are being treated -

You have IBS and absorption issues so would have thought it sensible to prescribe you liquid T4 ?

All I know is that when my ferritin was down at 22 - and I was very unwell -

before supplementing anything -

I was around 70 and I had to have a colonoscopy and endoscopy to rule anything else out -

and everywhere I researched suggested ferritin needed to be at least over 70 for any thyroid hormone replacement to work well :

When with known IBS and absorption issues -

When with primary hypothyroidism and low stomach acid - you will struggle to extract and break down nutrient dense foods -

and your ferritin is not going to build to a decent level any time soon -

It took me over year supplementing ferritin to tip over 70 - and I was refused an iron infusion.

I'm with Graves post RAI thyroid ablation 2005 at age 58 and my issues started when around 65 as my dose of T4 was reduced due to TSH readings and I believe probably age related -

I remember replying to you when you first posted on this patient to patient forum -

You can find all your previous posts and all your replies by pressing the icon top right facing me on my laptop - where you also find - MyHub - Chat - Post - Alerts and Menu icons.

You can read anyone else's profile by pressing their icon which sits alongside anything they write.

[Pennypingu in reply to pennyannie]

thank you for your response, I’ve already explained all about optimal vitamin levels to Gp but they just don’t listen, even told them when I had last iron infusion for low ferritin my full bloods were ok, it’s in my records, feel like telling them to actually look it up to prove I’m not making things up. I had endoscopy’s last year because I was really unwell and lost a lot of weight so they know there’s no problems there,

[pennyannie in reply to Pennypingu]

Well yes, I know and afraid I've had to do a lot for myself - still do - and now self medicate - buying my own thyroid hormone replacement + the vitamins and minerals - in order to keep my health optimal - rather than sinking - as the NHS would have me.

I had to pay for the appropriate NHS blood tests through my surgery -

which then showed my inability to convert well the T4 - Levothyroxine into T3 -

and was then refused any treatment option by the hospital and my doctor -

which would have reverted my health issues from deteriorating further :

My situation likely not as complex as your good self - I wonder if you can afford to go privately - Thyroid Uk - hold a list of recommended endos and thyroid specialist NHS and Private ? Maybe email admin @ thyroiduk.org for the patient to patient recommended list of thyroid specialists ?

You can then see who you might like to see - and ask forum members for feedback before you go -as the list is only as good as forum members updating it.

[Lovecake]

Your iron/ferritin is obviously an issue. Unfortunately, I don’t have any answers for that.

But it does look like you are under medicated for your thyroid. I assume you are on just levo? Can you ask for an increase? Or as has been suggested, go private and get help from an endo who might take notice of the iron issue too. Maybe having some T3 might help everything.

I had very low ferritn when I was struggling. My TSH was 5 but I wasn’t told. They doc was just proud of herself that she had “fixed” my fatigue by prescribing ferrous tablets. Luckily my levels have been ok since, but obviously my TSH just carried on rising. I moved house and doctors but now also see a private endo for my T3. He is helpful when I want something else looked at. He requests tests and scans done via my GP. Doesn’t see why I should have to pay for everything. I just say if I’m struggling and if he feels it’s not to do with the thyroid he says so in an update to the GP. Seems to work fairly well so far. But I do my research and put ideas out there for him to feel it was his idea….. I am lucky my current GP is really nice too.

I hope you get sorted soon so you can feel better 🙂🧁

[Pennypingu in reply to Lovecake]

thanks for your reply, spoken to GP, have more TFT bloods in couple of weeks, requested ferritin again,also doing transferrin saturation and full blood’s again, once results are back she will write to Endo , seems they all say, normal blood count so don’t need iron to increase ferritin. Yes I’m currently on 75mcg levo reduced from 100mcg after thyroidectomy in January, only just discharged from surgical Endo back to normal Endo.

[Lovecake in reply to Pennypingu]

I think I’d ask for an increase. Even 100/75 on alternate days. But ultimately I’d push for having T3 added to the levo as you’ve had a thyroidectomy

[Oliva1955 in reply to Pennypingu]

Hi , I had the same issues with my dr , my ferritin was 26 ( 20-291. ) she said she couldn’t treat me as I was in range ! Seriously ! Went to another dr and I had the NICE recommendations that anything under 30 is considered insufficient ! I a,so read that a full blood count and ferritin levels are not a good indication and to have a saturation test done. I. Had to insist on that and it came back at 16 and I was asked to get in contact with the surgery ! I made an appointment with the senior dr and told him I was going to put in an official complaint about the other two Drs ! When he saw the saturation result , he told me that a saturation test is the only indication of what’s going on !

I told him I did not need him to prescribe the iron supplements from the NHS as to many side effects , I take Simply Heme from the USA at great cost , I started with 2x 20 mg and worked my way up to 5 for my weight ! The dr said to come back after 3 months on optimal dosage and he would retest saturation and then do further tests , ie colonoscopy ( cancer in the family , due to have one this year but still waiting for confirmation )

I hope this helps , I also have Hashimotos and I have to self medicate since returning from the USA as Drs and Endocrinologist in leicester are not interested in NDT which I have been on for over 20 years .f

[Oliva1955 in reply to Pennypingu]

ridiculous to have reduced your T4 !I was diagnosed in the USA when I lived there and my staring level was 50 , then 75 Then 100 etc ! As it did not suit me I was then put on NDT ! Nightmare when I returned to the UK ! Saw Drs who had no idea what NDT was and endos were rude bullies that were not interested ! So , I now self medicate and the dr does do my bloods once ?

I hope this helps a d I wish you well !

[Oliva1955 in reply to Lovecake]

May o ask where on the uk you are and who your Endo is ? I presume he’s private ?

[Pennypingu in reply to Oliva1955]

I’ve just had a saturation test today along with ferritin and full blood count so see what happens once results are back. Symptoms worse than ever, virtually housebound as so weak.

I’m in Nottingham, no not private NHS, was treated for graves until total thyroidectomy in January due to U3 nodules. Just been discharged from endo surgery team back to previous endo who I was with before, don’t have follow up appointment with her yet so no idea if levels etc are ok as surgery team don’t deal with medication side so just said I’m in range 🙄, she was ok when treated for hyperthyroidism but obviously I’m now hypo so time will tell. Gp’s are the ones who aren’t listening at the minute as I was back under them for a while and they totally dismissed thyroid problem. It was just luck that I had to have endoscopy’s for the rapid weight loss etc last year and the endoscopy people added on a CT scan and found the nodules, dread to think where I’d be now if they hadn’t been found.

[Pennypingu in reply to Oliva1955]

Endo is at QMC hospital not sure if allowed to give name on here and no idea how to private message you, not very tech savvy 🙄

[Lovecake in reply to Oliva1955]

I have sent you a PM 😊

[FallingInReverse]

Penny, have you had an actual iron panel?

Iron and transferrin saturation percent for example?

[Pennypingu in reply to FallingInReverse]

Due to have iron panel repeated and transferrin saturation tested in a couple of weeks ,

[helvella]

That ferritin is appalling.

Might get something out of this:

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 04/07/2024

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

AND

NICE

Clinical Knowledge Summary > Anaemia - iron deficiency

Last revised in September 2023

Serum ferritin level is the biochemical test that most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

cks.nice.org.uk/topics/anae...

[Treesong2023]

Oh dear - i am sorry to hear of your low energy and on-going struggle with deaf and daft GPs. I fear the only way you will make real and fixed headway is to see a private Haematologist or Gastro ? The GP's have to listen to them, they get directed by all Clinical Specialists. I suggest you get the FBC and Iron Bloods done beforehand..and get into the ring for the winning round.. Good Luck! from me to you x

[Pennypingu in reply to Treesong2023]

Just had bloods done today so will see what results are when they’re back and go from there.