Why still low Iron

[Faith442024]

Hi everyone,

Firstly, I wanted to mention that I'm trying my best to remain resilient through this rollercoaster of hormonal fluctuations, but I must admit, I do falter at times. Today, I find myself confined to bed, feeling rather overwhelmed. However, knowing that there are others who can relate keeps me grounded and sane and I'm grateful for that 🙌

Anyway, I need to mention that since increasing my Levothyroxine to 125mcg daily, I haven't been feeling well. I feel similar to how I felt when I had Graves' disease: jittery, low mood, and anxious. I really dislike this feeling as it has been a significant part of my life. I'll be slightly reducing my Levothyroxine dosage as a result.

Another issue I've been dealing with is my supplementation regimen. I've been taking Iron, B12, Vitamin D, folate, and a B Complex, and most of my levels have improved since my last test. However, I'm shocked to see that my Iron levels have decreased. Previously, I was only taking Spatone, but upon your recommendations, I switched to pricey grass-fed beef iron (heme), and now my Iron levels seem to have dropped even lower than before I started supplementing.

I take two tablets of heme Iron before bedtime, and I must mention that my hair is falling out more than ever before, clearly because of less and less iron for whatever reason!

Can anyone please help me understand what might be going on?

I think lm beginning to realize that it's not as easy to restore iron levels, and that all the stress related to that lies ahead of me.

Also please help me to understand my THS, T3&T4 readings, as l'm still struggling to understand where l should be at.

I think my T3 should be between 60-70% through the range so lm clearly below and so lll need T3 supplementation, right?

Thank you so so much 🙌

[humanbean]

I've been taking Iron, B12, Vitamin D, folate, and a B Complex

What exactly were you supplementing with?

There are several forms of iron supplements, ditto with supplements for B12, folate, vitamin D, and B Complex.

Oh, and what is the time gap between the two sets of results?

[Faith442024 in reply to humanbean]

Hi humanbean

B12 drops - BioCare

Pure vitamin D3&k2 - British supplements

B complex thorne

The gap is 7 weeks..

[humanbean in reply to Faith442024]

Do the B12 drops contain Methylcobalamin? Methylcobalamin requires no conversion for the body to make use of it.

Some useful links on B12 :

perniciousanemia.org/b12/fo...

perniciousanemia.org/b12/le...

perniciousanemia.org/b12/le...

.

If you ever take a separate folate supplement please avoid folic acid and take methylfolate instead.

[Faith442024 in reply to humanbean]

Hi humanbean 🌺

Yes, the drops contains Methylcobalamin plus Folate.

No l don't take separate folate.

BioCare active B12 Methylcobalamin drops

[Bluesadawg in reply to humanbean]

Hello, whats the difference please? 🙂

[SlowDragon Administrator]

Free T4 (fT4) 18.3 pmol/L (12 - 22) 63.0%

Free T3 (fT3) 4.7 pmol/L (3.1 - 6.8) 43.2%

Was test early morning and last dose levothyroxine 24 hours before test

Results show you are definitely NOT on too high a dose levothyroxine

Which brand of levothyroxine are you taking

Are you on strictly gluten free diet and/or dairy free diet

If not get GP to do coeliac test BEFORE trialing GF

Folate improving nicely

Vitamin D you could reduce your level of supplements a little

[Faith442024 in reply to SlowDragon]

Hi SlowDragon,

Yes, that's correct. The test was done early in the morning on an empty stomach, and the last dose I took was 24 hours before the test.

Currently, I take Accord brand, with 100 mcg and 50 mcg tablets. I split the 50 mcg tablet and take a total of 125 mcg daily. However, I’ve been feeling anxious lately. My thyroid level is below 1, which people say is where most feel their best, but I still feel jittery and anxious. This is something I’ll need to explore further.

No, I'm not on a strict gluten or dairy-free diet. Could that be causing me to feel on edge?

Ok I’ll ask my GP to test me for Coeliac disease before going strictly gluten free.

Also like you've suggested, I’ll reduce my vitamin D intake.

Thank you 💐

[SlowDragon Administrator in reply to Faith442024]

No, I'm not on a strict gluten or dairy-free diet. Could that be causing me to feel on edge?

could be

Personally I had terrible anxiety until on strictly gluten free diet

Gluten intolerance is known to be possible cause of anxiety

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.

Most common by far is gluten. Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to 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 and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

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) 

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...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/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

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.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

[Faith442024 in reply to SlowDragon]

Oh wow! Thank you 💐 for sharing your own experience and so much information.

[TiggerMe Ambassador]

Your iron serum could well have increased even though your ferritin is lower, this just shows that you still have capacity for more.... do you have full iron results?

It was only a month ago we talked about heme iron? If you ordered some Three Arrows that takes over a week to arrive... so it's unlikely to have too much effect in a fortnight

[Faith442024 in reply to TiggerMe]

Hi TriggerMe

I see, I've got an iron test at home, so I'll do it tomorrow. My next iron test will be in 2-3 months' time.

I require kosher/halal supplements, so this one is currently my best option. It traveled a long distance from Australia to the UK, so you're right, less than 4 weeks wouldn't show much increase. I was only worried about why it decreased, but you've explained it, so thanks 💐

IRON - Grass Fed BEEF SPLEEN

[TiggerMe Ambassador in reply to Faith442024]

Probably better to wait until you have been on them a little longer?

Each capsule has 11mg of heme compared to the Three Arrows which has 20mg

[Faith442024 in reply to TiggerMe]

Oh, I see! That's a bummer because I've got an iron test that I bought on offer. It expires in December, so I'll have to use it before it expires.

"It's only been a month".

My God so true! it feels like an eternity when you're desperately trying to get better.

Thank you for all your help. 💐

[Moye75]

are you taking methylated b complex? This is an easier version to absorb and if you have the mthfr mutation, you will have issues absorbing a non methylated version. Your serum results will look normal but you won’t be able to actually utilise the b12/folate and that means you’ll become anemic even though you are supplementing with iron/b12. Serum levels are not helpful to diagnose this but you will have certain markers on a cbc showing anemia and the specific cause of the anemia. I have the mthfr mutation and I’m being tested for pernicious anemia so I take methylated sublingual b complex at the moment and my levels are now increasing. Low iron is directly linked to low thyroid levels so if you sort the b vitamin issue, the iron levels should then increase. Low b vitamins cause anxiety and depression as well as low energy and insomnia.

[Faith442024 in reply to Moye75]

Dear Moye75 I take THORNE Basic B complex and yes it is methylated form of B12.

[lovedoncebefore]

I used three arrows for months and my iron levels reduced! I now take nutri advanced FerroDyn and within 3 weeks my hemoglobin result was up to 120. You may need a different form of iron. I really thought I was doing the best I could by using the 3 arrows but no it gave me stomach cramps and reduced my iron levels but since taking the ferrodyn it has increased with no stomach cramps. I am very sensitive to supplements and their fillers but I've been ok on FerroDyn.

[Faith442024 in reply to lovedoncebefore]

Thank you so much for sharing your experience 🌹 It sounds like finding the right form of iron has been a game-changer for you, especially with your sensitivity to supplements and fillers. I’ll definitely give it a go after I finish my current iron if the levels don't increase.

Thank you again for the recommendation.

[Starseed56]

hello Faith. It can be a nightmare can’t it. Like you I have fluctuating iron levels/results and have had for most of my adult life I’m now finding out! Most of my iron levels fluctuate tho I do nothing different. I took three arrows iron for two and half months. The level of ferritin did eventually go up but other levels went down. Sick to death of feeling exhausted and getting nowhere I asked my GP for an iron infusion (I asked twice before I was granted) which I had six days ago. To date I feel no better but am told it takes about two weeks to see a difference so am still praying this may be an answer for me! I feel for you. It may be that you have problems converting and storing iron like some of us do. I hope you can find a way thru. Meantime rest as much as you can. 💜

[Faith442024 in reply to Starseed56]

Thank you so much for sharing 💜 It really is exhausting, isn’t it? I’m hoping the iron infusion kicks in soon for you. You may be right about the issues with converting and storing iron, it's something I’ll look into as well. Thanks for the advice, I’ll try to rest as much as I can. Wishing you all the best and hoping you feel better soon💜

[Starseed56 in reply to Faith442024]

Well I’ve passed the magic two weeks after which you’re meant to feel different and tragically I don’t! Blood tests tomorrow will be interesting to see….💜

[Faith442024 in reply to Starseed56]

Did the levels improve at all?

[Starseed56 in reply to Faith442024]

See my latest post .. 💜

[Catlady73]

only a suggestion … I’ve been on thyroxine for yrs … but the past 2 yrs my energy level have gone down so much …to the point I normally start to feel fatigued about 4 hours after I get up … symptoms began to show up too … I’ve just been diagnosed with long covid and CFS … if you look this up … a lot of people with thyroid issues can go on to develop cfs… so it’s worth checking your symptoms against this … there’s also a YouTube link called fight4me … this explains all symptoms of cfs too … worth noting new symptoms down …. I myself have lower iron levels , with no explanation

[Nikki96 in reply to Catlady73]

Hi I am the same. I’ve been on levo for years with no problem but have had long Covid for over a year and have very little energy. The fatigue makes doing any exercise very difficult. I also have dizziness.

[TiggerMe Ambassador in reply to Catlady73]

I certainly suffered from CFS for years but this was as a result of poorly treated Hypo, once I found this forum and righted the years of wrongs by optimising vits, mins, sex hormones and fT3 & 4 the CFS has been banished

[Faith442024 in reply to Catlady73]

Thank you for sharing that, and I’m sorry to hear what you’re going through. It’s interesting you mention CFS and thyroid issues—definitely something I’ll look into, as my energy levels have been really low too. I’ll check out that YouTube link and keep track of any new symptoms.

[connyankee]

From Paul Robinson's, Thyroid Patient's Manual, page 81, Chapter: Common Issues That May Interfere With Treatment

"Treatment options for low iron depend on the full iron panel results

With low serum iron and low ferritin there will probably also be mid-range or high TIBC and low transferrin saturation %. This really suggests iron supplementation is a good idea. If there is a low serum iron and low transferrin saturation %, but ferritin is high, this is suggestive of the presence of inflammation. In this case, iron supplementation is often not recommended until the inflammation comes down......."

It goes on, but I cannot type worth beans. But Robinson goes on to say,

"150-200 mg daily of elemental iron is often required....taken in 2 or 3 divided doses (related to TIBC levels).....glycinate or biglycinate" are recommended."

"Magnesuim citrate is good type" for the constipation that might occur. "

"Iron should be taken with vitamin C (whole food vitamin C is ideal, as ascorbic acid can lower iron levels). Lactoferrin helps to improve the absorption of iron supplements. If you struggle to raise iron levels with supplementation, try lactoferrin (100 mg). If you are having hair loss from low iron, L-lysine (1,000 mg) may also help."

I feel as if we must go to medical school to heal ourselves!!!!!

[Faith442024 in reply to connyankee]

I totally agree—navigating health information can be quite overwhelming! ( at least it is for me) It often feels like we have to learn so much just to take care of ourselves, which doesn’t seem fair.

I plan to explore lactoferrin (100 mg) and L-lysine (1,000 mg).

Thanks for sharing this important information 🌹

[connyankee in reply to Faith442024]

I've added L-lysine to my supplements. I have Frontal Fibrosing Alopecia which is due to my Hashimoto's, and genetics, so I doubt that supplements can help. I truly hate this disease. Good luck to you. I hope that you have a good doctor who is willing to help you.

[Faith442024 in reply to connyankee]

I can imagine this must be really challenging. Stay strong. Sending you prayers, positive thoughts, and good vibes 🌹

Thank you for your help.