Iron levels: I'm new to the forum. Has anyone... - Thyroid UK

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Iron levels

jrbarnes profile image
34 Replies

I'm new to the forum. Has anyone here corrected their T4/T3 conversion issues and symptoms by bringing up ferritin levels with iron supplements? My iron saturation was high and ferritin at 47. I've brought B12 and folate up. I had a messy seven months experimenting with NDT and now I'm back on levo. What a nightmare. NDT brought my T4 levels way down and I and started to develop myxedema symptoms. So I'm back on Levo waiting for T4 to build up. Today, I took a few iron tablets and started to feel a little better. Anyone with the same experience?

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jrbarnes
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pennyannie profile image
pennyannie

Hello jrbarnes and welcome to the forum :

I do know that I need my ferritin up at around 100 for my conversion of T4 into T3 :

This applied whether I was on T4 only : a T3/T4 combo or NDT :

I couldn't tolerate the prescribed iron tablets so purchased Solgar Gentle Iron and ate liver:

I know I have to maintain my ferritin, folate, B12 and vitamin D at optimal levels to be as well as I can be as I read no thyroid hormone replacement works well if core strength vitamins and minerals are not at optimal levels ;

Asda sell little pots of frozen chicken livers - they are clean and mild to taste : 1 pot a week whizzed down into a pate and kept in the fridge allows me, roughly, a spoonful a day and a dollop of mayo helps this little medicine go down.

jrbarnes profile image
jrbarnes in reply topennyannie

Have the chicken livers improved your B-12 naturally? I wonder what in the first place could be the reason for my low levels as I've always been a meat eater and like to be creative with cooking. I know the stores of B-12 take 2-4 years to deplete. Solgar is also one of my favored brands.

pennyannie profile image
pennyannie in reply tojrbarnes

I was replying regarding increasing ferritin levels - we seem to have our wires crossed.

jrbarnes profile image
jrbarnes in reply topennyannie

yes, I've been making a lot of mistakes lately! I meant ferritin.

pennyannie profile image
pennyannie in reply topennyannie

No worries - so yes, the chickens livers worked for me building up ferritin levels :

I cannot answer your question specifically, but my experience is that any form of T3 tends to lower FT4 levels. I don´t know if the extra T3 makes the body convert T4 to more reverse T3...even if the latter is not the problem it was once believed to be, rtT3 is the only way the body can get rid of excess T4. I would imagine that, when you take T3/NDT, the body senses the extra T3 and lowers FT4 as not as much is needed for conversion...it´s just my theory, but I have noticed a significant drop in FT4 levels since adding T3.

jrbarnes profile image
jrbarnes in reply to

The only dose I didn't experience myxedema symtpoms like facial swelling and carpal tunnel was 120mg on NDT but I was sweating and felt overworked, had to sit down and could barely exert myself in the garden. I dropped back down to 90mg and after a few days I felt amazing for a week but then after two weeks back to feeling too low. I stayed on 90mg for three weeks then went to 105mg and by the end of the week had the myxedema symptoms. Quit NDT and back on 88mcg of Levo and the swelling went away in two days. However now I'm back to the symptoms of high T4 and lower T3. If I lower to 75mcg on Levo I start getting the foot and wrist pain, body weakness but I don't have all those awful acid reflux and jaw clenching problems. To make it worse, on some brands the 88mcg isn't potent enough and other brands too potent. My generic that I'd taken for years was switched to Euthyrox and I immediately developed headaches and head pain, body weakness, which subsided with 5 mcg of T3. There needs to be serious reform on these medications!!!

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

U could’ve added levo to NDT maybe? Idk

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

I’m with you. I was on a whopper dose 100t4/15t3 A while back n while I was asymptomatic and not puffy/myxedematous, I was overworked, SOB, raging, etc

SeasideSusie profile image
SeasideSusieRemembering

Meanbeannyc

We try to be fairly lenient on the forum but I'm afraid the word you used is going to be offensive to some members so I've edited your post to remove it.

Meanbeannyc profile image
Meanbeannyc in reply toSeasideSusie

My apologies .

Meanbeannyc profile image
Meanbeannyc in reply toSeasideSusie

Def didn’t mean to offend anyone. :)

jrbarnes profile image
jrbarnes in reply toMeanbeannyc

no worries here. I have 100 swear words to describe how I feel about all these medications and the lack of knowledge or know how on the end of Drs!!

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

They’re not medications! They’re hormones. But yes I’m with you lolol.

jrbarnes profile image
jrbarnes in reply toMeanbeannyc

very true!

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

And technically it’s not the hormones fault, it’s our bodies that play silly games !

jrbarnes profile image
jrbarnes in reply toMeanbeannyc

A lot of reform is needed to align these hormones potency regardless of the brand or generic, including the types of fillers that can be used, to ensure patients can switch without suffering debilitating symptoms. 95-105% range is not good enough. Doctors should be more skilled in trouble shooting difficulties in dosing and how to correct conversion issues. My problem is that one brand is too high and the other too low! Too many patients are losing their quality of life.

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

what u mean one brand too high the other too low? Can’t u alternate or something?

jrbarnes profile image
jrbarnes in reply toMeanbeannyc

95-105% of the active ingredient is the standard. One brand could be more like 105% and the other like 95%. It gives me terrible symptoms when trying to find a brand that works. No Dr has ever suggested alternating.

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

So why wouldn’t u just go higher on the 95 brand and lower on the 105 brand?

jrbarnes profile image
jrbarnes in reply toMeanbeannyc

Trying to go higher made me feel terrible and trying to go lower made me feel terrible! My problem seems to be a conversion issue. Good amounts of T4 but poor amounts of T3.

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

I’m a poor converter too :(

But I think I like higher T4 with a T3 chaser.

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

I can’t find the right dose either lol

jrbarnes profile image
jrbarnes in reply toMeanbeannyc

I may go back to my old generic Levothyroxine and add some T3 to it. I don't seem to do well with anything under my usual T4 dose. The only exception is Tirosint. My Dr gave me a sample of that and it was terrible. I'm not taking it tomorrow. Made me feel anxiety, heart palps, weepy, and depressed. It's so frustrating to know if you should drop the T4 a little and use more T3. If only it didn't so many weeks to figure out.

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

That’s what I JUST DID!!!

Dropped my T4 and added T3. But it made me feel worse. I need my T4 high.

I had a higher T3 a few months ago but it made me RAGE. So that’s not good either. So now I’m

Trying to figure out a levo cytomel combo.

I was also prescribed tiro!

I was thinking about switching because I can’t get my levels evened out 1 year post op TT, but now you’ve made me reconsider.

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

I’m

Pretty sensitive to the hormonal changes. I don’t need labs for all that lol. My mistake back then was increasing my T3 on top of high T4, instead of keeping T3 and raising T4. So I’ll do that this time around. Raise my T4 and top up with T3. Trying NDT proved to me I like higher FT4.

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

It sucks Bc the symptoms overlap

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

My endo wants my TSH <1 on T4 and then add T3 due to low conversion. (Since T3 decreases TSH easily), she wants my T4 high enough.

Hah if it was only that easy to get my TSH low on synthroid lol

jrbarnes profile image
jrbarnes in reply toMeanbeannyc

Agreed. That's the worst part is that you can have hypo and hyper symptoms at the same time or symptoms that are hard to distinguish between hypo and hyper. Unless I was on 120 mg of natural desiccated it was too low but at that level it was too much, however my skin looked so good! My Tsh, with a FT4 of 1.6 to 1.8, was in the mid one range. If they tried to push that closer to 1 with more Levothyroxine I'm not sure how that would have felt. I suppose I could have added a little extra T4 on some days, since it's a storage hormone and it builds up. I can't figure out if my T3 levels started to fall because I just needed more Levothyroxine or if it's a conversion issue. I tried to take 100mcg instead of my usual 88mcg but it felt bad and I couldn't make it past one day. The problem is that you can't move this medication by small increments. They need more in between doses.

The day before yesterday I decided to try the sample of Tirosint 88mcg. By the end of the week it gave me anxiety, fluttering heart, chest tightness , depression, head numbness, acid refulx, and uncontrollable crying. I've never experienced anything that bad. I didn't take it yesterday and it wore off and felt better. I restarted today Tirosint 75mcg and 12.5 mcg of Euthyrox. Having the right amount of T4 keeps the foot and wrist pain away. This morning I took 1.25 mcg of T3, by splitting it, so I could get back to sleep. Every morning 3-4am I wake with a pounding heart because my T3 is real low. When I was on natural desiccated all those symptoms went away. Also, out of everything I tried Synthroid was the least potent and they put so many fillers and dyes in it. On Synthroid 88mcg by the end of the week I was bedridden.

Both of my Drs got tired of me and said I should see an endocrinologist. No thanks, I've already seen five. I scheduled an appointment with a functional medicine establishment in town that will spend more than 15 min with you. I haven't been able to work for almost three months and neither of my Drs would sign my short term medical leave but I felt so terrible I couldn't work. The lack of energy and weakness is crushing.

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

I am

Literally in the same exact boat as you lol. Except my TSH is high

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

And I felt that depression and weakness and weird thoughts on NDT. Also have an appt with an FP DR!

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

At least u can get your TSH down. I increase my dose and TSH goes up

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

YOU CAN move it in small increments, by alternating in a higher dose

Meanbeannyc profile image
Meanbeannyc in reply tojrbarnes

The more u keep changing, the more difficult it is going to be to feel better. If I were u, id pick a t4 dose and stick with it. And pick a T3 dose and stick with it. We’ve all been there where we change it up Bc we don’t feel well. Been there, done that. It doesn’t work

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