Low serum ferritin, but iron tests normal?

[luckyed]

Hello all,

I posted my blood tests results a couple of weeks ago:

FT3: 4.2 (range 3.5-6.5) (pre Levo level 3.9)

FT4: 15 (range 11.5-22.7) (pre Levo level 10.8)

TSH: 0.25 (0.55-4.78) (pre Levo level 0.34, but I am TSH deficient because of pituitary issues - also adrenal insufficient because of ACTH deficiency, so take hydrocortisone)

Serum ferritin: 24 (range 10-291)

Serum vit B12: 874 (211-911)

Serum folate: 6.07 (range 3.38-23.9)

Vit D: 81 (range 50-374) – although I have been taking a high dose supplement and soaking up lots of sun

FBC all came back as ‘normal’, except for a high % of hypochromic cells (which I have had consistently for the past few years, but am always told means nothing as the rest of the blood count is within range).

SlowDragon suggested that as my Ferritin result was very low, I asked for full iron panel tests. (Also that my Folate is rather low too).

I have had the iron tests, results as follows:

serum iron 20.2 (range 12.5-25)

serum transferrin 2.57 (range 1.8-3.2)

% iron saturation 30 (range 15-50)

Rest of FBC all within range, except AGAIN for:

% Hypochromic cells 4.2 (range 0-2.5)

So as far as the GP is concerned, I'm not anaemic, and therefore I'm "fine". Endo is happy with my T3/T4 levels, and therefore I'm "fine". However I feel far from fine, in fact I feel terrible! I want to go back to GP and talk about the possibility of being Iron Deficient without anaemia, but I wondered what anyone's experience of this might be? Is the % hypochromic cells significant when paired with low serum ferritin? I can't bear to be brushed off again by another Dr. (The last Dr suggested that as my results were "fine", it was my low mood that needs treating!)

I have read Dr Hedberg's article about Ferritin and Hypothyroid (amongst others online), but it doesn't really go far in suggesting a solution - for example, is iron supplementation effective in restoring low serum ferritin when your serum iron levels are ok? Or is it only diet that can help with these kind of results?

I am desperately tired, dizzy, light-headed, buzzing in ears, headaches, constantly in a fog, wading through treacle physically and mentally, I feel like I'm going down the plug hole (with 3 and 7 year old to try and keep up with). I'm so fed up I'm thinking of trying to find the $440 for a Dr Hedberg online consultation!

Any advice please?

[SlowDragon Administrator]

Ft4 is only 32% through range

Ft3 even worse at 24% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

These results show you need levothyroxine dose increase

Aim of levothyroxine is to increase in 25mcg steps upwards until Ft4 is at least 2/3rds through range and Ft3 and at least half way through range

How much levothyroxine are you currently taking

Do you always get same brand of levothyroxine

Folate is also low

[luckyed in reply to SlowDragon]

Yes, I always have to get Wockhardt (tricky these days!), as I had a terrible reaction starting on Teva. I'm now on 25/50mcg on alternate days.

As my endo seems to be happy with my levels now, my strategy was to try and optimise my ferritin, folate, vit d and B12, and then go back (next appointment is November currently) and ask for an increase.

You recommended a B complex before, to help with the folate, but am I OK to take when my B12 is pretty high? And then there's what to do about the low Ferritin...

Is it worth me asking to be tested for celiac if I have no obvious (gastro) issues?

Thanks so much.

[SlowDragon Administrator in reply to luckyed]

Presumably you don’t supplement B12?

B12 can appear high, if other B vitamins are low

A vitamin B complex aims to keep all B vitamins in balance

[SlowDragon Administrator in reply to luckyed]

Poor gut function can lead leaky gut when hypothyroid (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Why gluten intolerance can upset cortisol levels

kalishinstitute.com/blog/gl...

Members on here who don’t have Hashimoto’s have still sometimes found gluten free diet beneficial

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

[SlowDragon Administrator in reply to luckyed]

Suggest you ask for dose increase in levothyroxine now

[luckyed in reply to SlowDragon]

Thanks so much SlowDragon . Did you have any thoughts on whether I can start on a supplement to try to raise my Ferritin level, given that my blood iron level is pretty high?

[Gophe in reply to luckyed]

Hi Luckyed. I had a similar situation, although it sounds like you're feeling worse than I was. I had zero energy with everthing 'normal' except low ferritin. My FT3 and FT4 were low in range and my TSH was 2.89. That was about 3 weeks ago. I was honest with my GP and told him Thyroid UK suggests TSH below 1 for best results and could we give that a try to see if it helped. He was fine with it. On the ferritin front, based on advice from this forum, I started eating iron rich foods (started with black beans and pumpkin seeds, then chicken liver pate, and I've now been eating liver for the last couple of days), and that complete exhaustion I felt just last weekend has lifted. It's too soon to tell if it's an unrelated temporary boost of energy or if the iron intake is working. But I thought it was worth sharing at least a *possible* solution.

[luckyed in reply to Gophe]

Many thanks Gophe I'll give that a go. My husband is keen as he loves liver, but I have a real aversion since being force-fed it as a child - "it's good for you"! If it makes me feel better, I'll do it!

I was told that as my TSH doesn't work properly due to pituitary problems, I have to ignore that level and just look at T3/4 levels (a fact that a lot of endos then forget when they try telling me my I'm over-medicated as my TSH is being suppressed 🙄).

[SlowDragon Administrator in reply to luckyed]

Vast numbers of people on thyroid replacement find TSH drops right down long before they are optimally medicated

Ask Endo to increase dose levothyroxine to 50mcg everyday .....that’s only the standard starter dose

Likely to need to increase levothyroxine on slowly upwards until on 1.6mcg per kilo of you weight

[SlowDragon Administrator in reply to luckyed]

You can hide liver in spag Bol, shep pie, curry even

Liver pate on gluten free toast ...delicious

[SlowDragon Administrator in reply to luckyed]

Hopefully humanbean or SeasideSusie may pop along to comment

Probably only by eating foods if iron levels are high

[luckyed in reply to SlowDragon]

Thank you SlowDragon !

[SeasideSusie Remembering in reply to luckyed]

luckyed

According to rt3-adrenals.org/Iron_test_... optimal levels for an iron panel are

Serum iron: 55 to 70% of the range, higher end for men - yours is 61.6% through range

Saturation: optimal is 35 to 45%, higher end for men - yours is 30%

Transferrin: Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - yours is 55% through range

Ferritin: Low level virtually always indicates need for iron supplementation; High level with low serum iron/low saturation indicates inflammation or infection - yours is very low at 4.98% through range

FBC all came back as ‘normal’, except for a high % of hypochromic cells (which I have had consistently for the past few years, but am always told means nothing as the rest of the blood count is within range).

% Hypochromic cells 4.2 (range 0-2.5)

I have no knowledge of Hypochromic cells so had to do a quick Google. From

medlineplus.gov/ency/articl...

Hypochromia means that the red blood cells have less color than normal when examined under a microscope. This usually occurs when there is not enough of the pigment that carries oxygen (hemoglobin) in the red blood cells.

The most common cause of hypochromia in the United States is not enough iron in the body (iron deficiency). If it is not treated, this can lead to a disorder called iron deficiency anemia.

The cause of hypochromia should be evaluated by your health care provider.

Just because your GP *thinks* everything is OK, that's not the opinion of an expert in the field, maybe push for a referral. Do some further research on this and present to your GP, saying there must be a reason and you'd like it looked into.

As for supplementing to raise ferritin, any iron supplements will very likely raise your serum iron as well and you can see from the optimal levels I have mentioned above that you really don't have room to let your serum iron get any higher, so any suggestion supplementing should be done under the supervision of a doctor with regular monitoring.

I raised my ferritin level, which wasn't as low as yours, just by eating liver every week, this didn't seem to have an effect on the rest of my iron panel but I can't say that would be the case for everyone. I always do a sort of stir-fry with liver, with onions, mushrooms, peppers, thin strips of liver, then when cooked as some cooked peas and rice, whatever takes your fancy.

You definitely need an increase in your Levo to raise your FT4 and FT3 levels.

As for B Complex, check out some brands as there are some with low levels of B12 but good levels of melthylfolate. You'd need 400mcg methylfolate. Look for "bioavailable" or "bioactive" in the description.

[luckyed in reply to SeasideSusie]

SeasideSusie thank you so much for all of that, and for taking the time to look up hypochromia too. I think it needs further investigating, but often it is point number 5 (or so) when I'm seeing the GP, and by that point I get the feeling their patience is wearing thin! When you say an expert referral, would that be a hematologist?

Then to work on the endo, who says my levels are acceptable, and in his last letter a few weeks ago, "I am not inclined to reduce your levothyroxine, please remain on your current dose". Where do you start with someone who thinks like that?!

[SeasideSusie Remembering in reply to luckyed]

luckyed

When you say an expert referral, would that be a hematologist?

Yes, I think so unless your GP knows of someone more appropriate.

Then to work on the endo, who says my levels are acceptable, and in his last letter a few weeks ago, "I am not inclined to reduce your levothyroxine, please remain on your current dose". Where do you start with someone who thinks like that?!

Well, you really don't want to know what I think of endos following my experience back in 2003. He made me extremely ill, suffice it to say I binned him off after the third appointment, with the blessing of my GP who agreed that his whole approach was wrong. I have vowed never to see another endo as long as I live. I sort myself out now, take my Levo prescription then do my own thing.

[luckyed in reply to SeasideSusie]

I can well understand that. I am so fed up of being at the mercy of one person's (ill-informed) opinion! Thanks for your help.

[humanbean]

You might find this research paper of some interest to you and possibly of some interest to your doctor :

Title : Effect of iron supplementation on fatigue in nonanemic menstruating women with low ferritin: a randomized controlled trial

Link : cmaj.ca/content/cmaj/184/11...

The abstract only can be found here :

cmaj.ca/content/184/11/1247...

...

You might also find this link of interest :

healthunlocked.com/thyroidu...

The above link explains why we are usually reluctant to suggest to people that they take iron supplements when ferritin is low but other iron measures are reasonably good.

...

If you were to decide to supplement iron then you need to test frequently and be aware of the possible dangers as given in the previous link.

But to do a full iron panel with a finger-prick test :

medichecks.com/iron-tests/i...

healthunlocked.com/thyroidu...

And optimal iron results are described here :

rt3-adrenals.org/Iron_test_...

[luckyed in reply to humanbean]

humanbean thank you very much for all of that, it is great to have some facts and studies and facts behind me when I talk to GP.