Ferritin Levels - Any guidelines to show GP?

[FancyPants54]

My latest iron test has come back with my ferritin remaining low despite 3 months of trying to raise it.

I've been given good advice on here about how to raise it by eating the dreaded liver. But I am going to go and see my GP about it too because I've had a problem with ferritin for 20 years and I could do with knowing why.

I increased my thyroid dose to 75mcg this morning and felt rubbish for a few hours. My TSH is 10.3 and yet my Free T's are just below middle and people here think this is odd. I'm wondering if it's down to the low ferritin.

My question is does anyone have any links to "official" guidelines I can show my GP about the need in thyroid patients for ferritin to be 70-80?

[Rmichelle]

Hi i have had the same problem-i did try boosting mine last year with liver and orher foods-did not work! In january i had a iron level of 10!! And was very very symptomatic now my level is 27 after using floravital liquid, i am also celiac so now i have pestered my gp to refer me to GI and haem as labs also suggested that i need referral. I belueve there are NICE guidlines.

[FancyPants54 in reply to Rmichelle]

My problem is that my levels are within the "normal" range. Just very low within the range. I want my ferritin at 70 and it's just 32.

[Rmichelle in reply to FancyPants54]

You do not need a gp permission just do it yourselve-lots out there to choose from, mine is from boots £10.99. Ask people on this site what they use. Go for it!! But be careful as iron can be toxic and yiu will need to keep having regular tests for how yiur iron is raising.😊

[FancyPants54 in reply to Rmichelle]

I've been doing it myself. And it went down not up! 3 months of swallowing iron tablets and my ferritin went down.

[Rmichelle in reply to FancyPants54]

Ooh right, what are you taking? I surpose you know all thus but-are you taking iron away from all caffiene and other meds? Are you taking any ppi's for acid reflux? It maybe worth you putting out another post to see what people can advise? I had a bit of a struggle with my gp as all though i have managed to raise mine slightly he did state it was now in range but i mentioned my celiac and also heavy menstrual bleeding too and the recommended level is 70 or above for ladies as i may have a absorption problem-he did change his tune, you cant tell me that whether you are low in the range or high in range you are going to feel the same-one size does not fit all does it??

[FancyPants54 in reply to Rmichelle]

I was using Solgar Gentle Iron. I don't drink caffein, I'm not on PPI's and I took Vitamin C with the iron to aid absorption. I'm at a loss why it went down a bit rather than up.

I am going to make an appointment with my GP next week and talk to them about it. I've struggled with ferritin and hair loss for over 20 years. I need to try to find out why it stays low. Especially as now it's probably affecting my ability to make use of the Levo.

[Rmichelle in reply to FancyPants54]

Maybe getting a celiac test too, i think you need to persist with this and keep nagging gp as 9 times out of 10 they do not listern or agree, i was determined not to leave without referral. Good luck🌟🌟

[taka in reply to FancyPants54]

It may be you just need to take a higher dose of iron? According to Google Solgar gentle Iron has 20mg of iron per tablet. The ferrous fumerate my GP prescribed are 68mg per tablet for example and 2-3 tablets would be normal to treat anaemia according to the NICE link below and 1 for a prophylactic dose to maintain levels and prevent them dropping.

Maybe see if there are guidelines for your area - mine like to have women at 40ug/ml or higher for ferritin despite the "normal" range starting lower. This and the fact that taking 20ug per day hasn't helped may help convince your GP to give you something stronger and maybe refer you on for further investigations?

[FancyPants54 in reply to taka]

I was actually taking 2 or 3 capsules a day because it was such a low dose.

Everyone on here says you must have ferritin at 70 for thyroid hormone to work. So I'm kind of bummed that I've wasted 3 months.

[Redlester in reply to FancyPants54]

that would suggest that there is something wrong and that maybe you shouldn't be supplementing iron. I also have a very low ferritin level which is probably too low for my body to make good use of my T3 - my level got up to 14 [and that was after me working on it with pate and other iron rich foods!!!]

[Hidden]

Not what you've asked for but might be helpful 😊

metabolichealing.com/iron-d...

[FancyPants54 in reply to Hidden]

That sounds hard. I've been trying to fix myself for about 8 or 10 years now. First it was just stubborn weight issues, then IBS, then a gradual slowing down and then the menopause... It's like a never ending trend of issues. I've swallowed so many vitamins and minerals in that time. I'd hate to know how much I've spent. All the testing. The supplements. The therapists. And still I can barely walk down the road and never get to my place of work before 2pm because I can't get moving in the morning. Good job I'm my own boss.

[Rmichelle in reply to FancyPants54]

healthunlocked.com/api/redi...

[Hidden in reply to FancyPants54]

I'm starting to see that the road ahead is very twisty too 😣 and menopause certainly not helpful, I'm in that boat too.

The only thing that has been any real help to me since diagnosis in Dec 16 has been this forum. My health is truly better in my hands - yes the cost is irritating but compared to the the stress of dealing with NHS ..... constant banging head against a brick wall! That's not good for anyone.

[Redlester in reply to FancyPants54]

you are describing my situation exactly - I applaud you trying to work if your body is having the problems mine is!!

[FancyPants54 in reply to Redlester]

That was 2 years ago. I'm still as bad, only now I have atrial fibrillation to contend with too. Still can barely walk, the beta blocker for the AF drains me completely. Terrible pain in my feet sometimes. Still running my business. I'm a fighter that's for sure.

I have just had the Dio2 Gene test done and now know that I have inherited a faulty gene from one parent or the other and so my body can't convert the Levo into active T3 very well at all. This explains why, no matter how much Levo I take, my T3 hardly moves but the Levo makes me feel more unwell.

No doctor will sort this out for me now. They aren't even interested. I have to find a way myself.

[Redlester in reply to FancyPants54]

At least you have the Dio2 test results to back you up, and that would explain why the Levo is probably making you worse as not only are you not getting enough T3 but others on here describe how they feel in that circumstance that the Levo is "poisoning" them. It would be interesting to see how you do if you switch to T3. Have you tried NDT? (altho it still has T4 in it so you would have the same problem as with the Levo). I don't know how you manage to run your business with the pain and other symptoms you describe. I can barely manage to get around the ground floor of my own home at the moment. The stairs are a once a day only thing for me. I tried to describe this to my GP. She didn't seem to get it. Menopause is making things worse on a daily basis.

[FancyPants54 in reply to Redlester]

Stairs are hard. Fortunately I don't have any at work. The pain from walking is so depressing. I was fit before all this happened. Now I look like a sack of nuts.

There's no guarantee that a GP or Endo will take notice of the gene test. But I do see a private endo, so I'm hoping he can help with that. I've tried NDT in the past but it's hard to get and all the formulations seem to have changed and I obviously didn't feel right on it because I stopped. I can't remember why now.

Do go and get some HRT. It really isn't worth suffering with that as well. Ask for transdermal patch or gel and a progesterone of some kind (unless you've had a hysterectomy when you don't need the prog.). The gel and patches are not indicated for increased stroke risk or anything. I do best on patches. I've tried gel but patches are better for me. Others swear by the gel.

[Redlester in reply to FancyPants54]

It would seem then that you might likely be a suitable candidate for T3 - or at least a T3 trial. Hopefully if you are seeing a private endo he will give you a script for that, especially since you are armed with the gene test result. If he doesn't and you want to try it I can pm you details of the T3 supplier I use but there are different brands out there and like everything else what works well for one person doesn't suit another so there is no guarantee that the brand I use will suit you. I'm going to try the progesterone cream for starters - cannot wait for it to arrive. I am convinced that the menopause is making all of my issues worse and sadly I really wouldn't want to be taking what the NHS is offering by way of HRT. My sister is taking Utrogestan and an estrogen gel and seems to be doing well on that. Who'd be a lady eh???

[Hidden in reply to Hidden]

FancyPants54 this is sometimes suggested by Marz

luckyironfish.com

[Redlester in reply to Hidden]

that was an excellent paper - it describes what has been going on in my body for over 20 years which all my GPs in that time period have been content to simply ignore - deeming everything to be "normal" and not seeing the patterns. There seems to be a vicious circle of "chicken and egg" going on and I seem to be locked into it and am finding it very hard to break it.

[Rmichelle]

healthunlocked.com/api/redi...