Hi! First post here after reading through the forum for a week or so.
I'd like to start by saying a big THANK YOU to all the knowledgeable folks who have posted on here, especially the Administrators who are incredibly helpful.
I've very recently been diagnosed with autoimmune thyroid disease and have been put on a very low starting dose of levothyroxine: 25 mcg (WOCKHARDT brand)... full timeline in my biog.
The diagnosis was based on my blood panel results - here are the highlights (low lights?) from these tests:
TSH: 5.77 (0.20 - 4.50)
FT4: 10.2 (7.00 - 17.00)
TPO: 20.0 (0.00 - 9.00)
Ferritin: 12.0 (10.00 - 150.00)
Total 25-OH Vit. D 69.7 (50.00 - 250.00)
This was routine NHS blood testing, so there are no FT3 or other antibody tests. I was due to have B12 tested but it was forgotten to be added to the requested tests (pure accident and I received a prompt apology from the Clinical Pharmacists when she realised she forgot the B12 test request). I've attached a screen grab of all the test results, FBC, etc. - apologies if it's very small.
My question is... I've stopped all supplements as I want to have a proper baseline for everything when I get re-tested at the start of August (I was taking Vit. D, B12 (I'm a vegetarian as well as my dad having PA), Zn, Mg, omega 3, 6, 9, collagen, and CoQ-10 in a desperate attempt to fight the fatigue and find some more energy), but my tinnitus and paresthesia have got a lot worse recently (along with a new MASSIVELY sore throat all the time). I'm wondering about paying for private testing so I can get my baseline sooner and I can restart taking supplements as I don't want to compound any possible damage that's happening. I don't have any income right now so it would be a big investment for me. What do people advised, based on my numbers?
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ERIC107
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Your ferritin (iron stores) is dreadful. And I'm not happy that the NHS is using a reference range of 10 - 150. The lower level in the reference range is far too low for good health, in my opinion.
If you read the NICE Guidelines (which doctors, unfortunately, aren't obliged to follow), on this link :
read the section on "Interpreting Ferritin Levels" and you'll see this :
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
So if NICE thinks anything under 30 mcg/L is deficient for ferritin then your result is clearly appalling.
With the reference range you've been given I would say that many people feel best with a level of approximately 100 mcg/L, although opinions vary, and just getting to 80 (ish) may be enough for you. Going too high for iron or ferritin is not a good idea because the body can't get rid of excess iron, other than tiny amounts in faeces, although obviously menstruating women can often get rid of iron far too quickly!
Although your ferritin is extremely low you aren't actually officially anaemic. That is determined by the haemoglobin level. On the same link as above see the section on "Interpreting a Full Blood Count".
Anaemia is defined as a haemoglobin (Hb) level two standard deviations below the normal for age and sex:
In men aged over 15 years — Hb below 130 g/L.
In non-pregnant women aged over 15 years — Hb below 120 g/L.
In children aged 12–14 years of age — Hb below 120 g/L.
Again the NHS ignores NICE and uses a reference range of 115 - 165, whereas anaemia is defined for non-pregnant women as haemoglobin being under 120 g/L.
With your result of 123 g/L you aren't far off being anaemic but you haven't officially got there yet. However, if someone is low or deficient in iron then it should be treated. Making the patient wait until they are anaemic as well is sadistic, and NOT conducive to good health.
...
The problem with iron and ferritin is that various things can happen, and it is potentially dangerous to take iron without knowing more about your iron/ferritin status :
Iron could be low while ferritin is high.
Iron could be high while ferritin is low.
Iron and ferritin could both be high.
Iron and ferritin could both be low.
And of course one of them could be "normal" while the other is low or high.
Depending on the results of an iron panel you might need to take iron supplements. They are problematic in that people often have problems tolerating and absorbing iron.
Depending on the results it might tell you different things about your health.
Suggested optimal levels for iron and iron-related levels can be found here :
For any private company you ever decide to use for getting tests done it is worth registering or creating an account with them beforehand. You will usually be informed about special offers and sales and discount codes by email if you do that.
Hi humanbean thank you so much for your really comprehensive reply (your replies on this forum have been among the many that I've found incredibly informative 😊).
I agree with your assessment - I also was concerned by the ferritin number. To be fair to my GP surgery and Clinical Pharmacist, they have been nothing but supportive and are usually open to discussion. The only reason I would have to wait another month for a blood test is that's when I've been told to schedule a thyroid follow-up/review test. There's every chance that my GP would agree to include an iron panel at that stage (although she *might* not)... but that's in four weeks' time. I think will look at private testing that includes Fe/ferritin/haemoglobin and see if I can get a full picture sooner than four weeks.
Can't you ring the surgery and tell them that you are extremely concerned about your low ferritin level, tell them that your dad has PA and that also concerns you given how tired you feel, and ask them to fun a full iron panel and to test for PA as soon as possible?
I would try that route first because, as you will probably find out, GPs are very "against" private tests and will ignore them given half a chance. We use them so that we know what's going on. But they often won't accept them. So best to get all you can tested by the surgery.
Amazing - thank you so much SlowDragon ! Lots of great information - I'll take a good read through them all. TBH my levels of concern regarding Fe/ferritin are growing somewhat. I really hope I can have a positive conversation with the GP tomorrow.
That's very true! I'm also a distance runner so I'm acutely conscious of my iron needs - but obviously had not been doing enough (anything) about it more recently. The suggestions I've had on here absolutely tally with my severe drop off in running performance over the past 18-24 months, so it all fits with the bigger picture. Thank you, again.
I eventually found that it was easier and less stressful than begging /pleading for tests that the doctors didn’t want to do just to do my own home fingerpick tests. I use a Medichecks one that does everything thyroid plus antibodies, vitamins, inflammation etc. it covers far more than I was ever able to get either my endo or my GP to test and I like it for peace of mind.
It’s probably a good idea though to keep it in reserve until you’ve spoken with your doctor.
Thanks Fruitandnutcase - I've pretty much decided to follow exactly the path you've described... I don't want to antagonise my, up until now, excellent GP service, but I also want the full picture at the start of this "journey" so I can try to understand "cause and effect" and what input is causing what observed outcome(s). Many thanks for your advice!
I have never mentioned to my doctors that I test for myself. What I do like about home testing is that when I used to do it shortly before my endo visit there were no nasty shocks because I always knew what my results were already. That actually feels good more so for something like HbA1c.
The thyroid lab ranges aren’t the same as the ranges my hospital uses but my position within the range is the same so that’s good enough for me.
Just a brief update... I spoke with a receptionist at the surgery who was very helpful, noted everything down, and arranged for a GP to text me back with an appointment.
Very quickly after, I received a text from a GP (not the original lady who diagnosed the AITD but another male GP with whom I have also dealt in the past).
He said in the text that he's arranged for a B12 test (unsure if this will include folate - will ask the phlebotomist on the day) so I should just phone and book a time to have bloods taken, and that I already had my iron tested in May and it was in "normal range" although at the low end so "it may be worth [me] taking 3 months of iron and then repeating the test. Iron can be purchased over the counter from [my] community pharmacist."
As an analytical chemist by profession, taking about "purchasing/taking iron" gives me a mental image of the pharmacist handing over girders to suck on!!! 😂 I will start supplementing with an iron-containing supplement and see how that goes.
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