Hi. I’m new to HealthUnlocked and to this group. I’m also in America, so I hope it’s OK that I post here. I’ll try to put in all the info I have and follow proper posting guidelines. It’s taken me a while to be able to get this post all typed up due to tiredness and brain fog.
I just had 3 month follow-up labs pulled this week that I want to share—but first some background-
In January, I asked my Primary Care Provider (which is think is comparable to a GP in the UK) to check my iron levels due to recent (previous 3 months) worth of very heavy cycles and overall fatigue. I was called when results were in and told my levels were low. I really wasn’t given much guidance in January other than “to begin taking an iron supplement”. I wasn’t told what kind. I did my own research and purchased Iron bisglycinate, 25mg, but I was only taking it during my very heavy cycle days.
I’ve also been diagnosed with Hashimotos for many years (~2010?) (via a positive antibody test, followed by a thyroid ultrasound for confirmation) and I am on NDT (Armour) 60 mgs (1 grain).
My 3-month follow-up blood draw was this week and I asked for the results to be sent to me. I’ve learned from reading posts here that I took the thyroid too far away from my lab draw (23 hours), which for a thyroid medicine with T3, I understand now is supposed to be only 8-12 hours before the blood draw. I’ll put in my lab numbers below and give the ranges as I’m not sure if American labs use different ranges.
Also, I didn’t know before I came here to this group that I was supposed to also ask doctor to check for Folate, B12 and Vitamin D levels and these labs weren’t done. I am not sure this is standard in America—I’ve gone through years and years of old labs and cannot find a B12 test ever being done. Last time Vitamin D was checked was March 2022 and level then was 33 (range 30-100).
Monday, April 29th labs with 60mg Armour thyroid taken 23 hours before the test:
Thyroid results:
TSH 2.22 (0.45-4.5)
Free T3 2.8 (2.0-4.4)
Free T4 0.84 (0.82-1.77)
Iron panel results:
Hemoglobin 10.9 (11.5-16.5)
Hematocrit %: 33.6 (35-55)
Iron 28 (27-159)
Iron Saturation 7 (15-55) (!)
Ferritin 10 (15-150) (!)
TIBC 383 (250-450)
Since receiving my test results, I’ve joined this forum and done some reading and last night I ordered the Three Rivers heme iron that I’ve seen mentioned here and I received notice earlier that it has shipped.
Other than to wait for it to arrive, calculate the correct dosage, and begin taking, are there any other immediate steps I could/should take? For thyroid, I could take additional NDT but I’m already having trouble with anxiety and heart palpitations perhaps due to low iron/ferritin.
Thank you. 🙂
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SugarMint
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Hello fellow American! There are indeed a bunch of us on here : )
I must say, I’m not sure I’ve seen a more conclusively anemic iron panel! I was surprised when you said your doctor called it out… but then looking at your numbers I can see why! Btw - my ferritin started in single digits, as did my daughters.
The Iron bisglycinate, 25mg won’t have done anything for you.
Three Arrows will be just what you need.
How much do you weigh?
And are you able to ask for follow up iron panels as frequently as you want? And will you doctor be open to you asking for an extra measure to test?
Hi. Thanks so much for your response and help. 🏵️ Here are my answers:
How much do you weigh?
I am over 200lb now. I’ve put on 30 of those pounds over this last year. I forget who posted it on here and now I can’t find it again, but I saw a link to a presentation talking about iron deficiency and weight gain, so am hopeful to begin to turn this around some when I begin the heme iron. I had chalked further weight gain up to a medicine I was put on right about this time last year for OCD called clomipramine (that I’ve now since tapered off). I didn’t know I had the anemia going on and I further didn’t know it had anything to do with weight.
I see where it says on the Three Rivers site that my max dose is going to be 200mg a day. Am I going to want to dose every other day-I had found on here saying perhaps every other day dosing might work best?
And are you able to ask for follow up iron panels as frequently as you want? And will you doctor be open to you asking for an extra measure to test?
She wanted to see me again in 6 months, which I believe is going to be too long an interval to check progress on raising my levels. I’m not sure the interval my insurance covers repeat testing, however I found a lab where I can purchase an anemia panel out of pocket and go get a draw and it does include both B12 and Folate. I can look to do that at whatever time point makes sense. I was thinking 3 months from when I start the heme iron would be good(?)
My PCP was open to my asking for the Free T3, test for thyroid, which she wasn’t going to pull otherwise, so I could ask next time I’m in for labs for the Folate, B12 and Vitamin D, but I was looking to find an answer to the question on here she may then ask me of “Why do you want to check those things?”
Hi. They didn’t, and I didn’t know until I found this forum to ask for those to be pulled at the same time. I did find a lab where I can go get these levels tested for an out of pocket fee, or I could write and ask her if she’d send in an additional lab order to have these tested too, but she may ask me “why?”
It would be a good idea to get them tested if you can. The B vitamins work together and any deficiency in B12 generally also means a deficiency in folate, although it can look normal or high in a serum test as folate cannot be properly metabolised without enough B12. The Hashi's makes it more likely that you will have anti gastric parietal cell antibodies which affects both stomach acidity and levels of intrinsic factor - both are needed for B12 absorption (although not just B12, this commonly affects a number of nutrients). Serum testing alone cannot rule out a B12 deficiency, but may rule one in. Ideally you would want serum B12, serum folate, active B12 (holotc) anti parietal cell antibodies, anti intrinsic factor antibodies, serum gastrin, methylmalonic acid, homocysteine and a full blood count for things like MCV, RDW - having iron deficiency will skew some of these markers and could be masking a B12 and/or folate deficiency. Vit D deficiency is common anyway and even more so with Hashi's. As an immune modulator, getting it optimal can be very helpful. Good luck.
It sounds like you have been dealing with low Iron for sometime and your doctor other than running labs has done very little….Personally I would find another doctor.
Yes. Thank you. I tend to agree now that I’m reading posts on this forum and becoming more educated. I’ve been disappointed with the “take an iron supplement and I’ll see you in 6 months” approach to this and also saying no changes were needed to thyroid meds.
I was seeing an endocrinologist at one time, but I felt she was pushing her in-house nutritionist on me a bit strongly, only because seeing her nutritionist meant agreeing to buying the shakes and supplements out of pocket that was sold as part of their weight loss program.
I could find another endocrinologist though. I tried to call a hematologist about seeing them to discuss the anemia, but a referral was required and current provider won’t give me one since she believes the solution to my anemia is taking an off-the-shelf iron supplement to correct. I am only understanding now that a ferritin level that has gotten this low didn’t happen overnight and has been coming on for a while.
I’ve been disappointed with the “take an iron supplement and I’ll see you in 6 months” approach
If you have bought yourself a bottle or packet of iron supplements, then perhaps you should do a re-test after you've finished the first bottle/packet or every 6 weeks whichever happens first.. Waiting six months before re-testing is absolutely absurd. If you absorb iron well then you might end up with too much iron or ferritin.
If you re-test after, say, 6 weeks you will then have an idea of how well your levels are rising, and can adjust your testing frequency accordingly. For example (made up numbers), if your ferritin and serum iron are low and your ferritin goes from 10 to 12 after 6 weeks you know it is likely to be a long slog to raise your levels, particularly if your serum iron hardly changes.
But if your ferritin rises from 10 to 30 after 6 weeks you will need to test more often, even if your serum iron stays low, because very high ferritin (and/or serum iron) is not desirable, and you need to know if that is likely to happen and reduce your dose or stop your supplementing early.
Note that having optimal levels of vitamin B12 and folate might help the ratio of serum iron to ferritin.
This link explains the optimal levels of iron and other iron-related tests that we usually use.
Quote from that link... It is worth reading it all :
Normal ferritin levels for women are between 20 and 200 ng/mL. According to some experts, ferritin levels of at least 40 ng/ml are required to stop hair loss, while levels of at least 70 ng/ml are needed for hair regrowth. The optimal ferritin level for thyroid function is between 90-110 ng/ml.
You can check your ferritin levels easily with Ulta Lab Tests.
The quote above has a recommendation for a testing lab. I just wanted to point out that I know absolutely nothing about them at all. There are various companies in the USA that offer testing directly to patients without involving doctors or insurance companies, if it interests you or your doctor won't test when you ask.
Hello there. I am not surprised that you feel so low with that iron level. I hope that the supplementation will have an effect. Try to take your iron supplement with some Vit C (e.g., bit of orange juice ), as this will help with the absorption.
Your thyroid medication is also not optimal. In patients treated with thyroid medication, the TSH should be below 1 and both your T4 and T3 should be around 75% through the range. Your TSH is still a bit high and the free T3 and T4 levels are quite low, and this will definitely contribute to your tiredness and weight issues. Could you not ask for an increase? If your thyroid hormone replacement is not sufficient, you will struggle to get your weight down, as your thyroid hormones are connected to your metabolism. In addition, low thyroid hormones can also mean that you can have higher glucose or cholesterol levels, as this is all tied in with your ability to process these efficiently. I would insist on going higher and see if it does make a difference.
Your Vitamin D levels are also too low. Again, 33 is just in the 'sufficient ' range, but nowhere near an optimal range, so I would try to increase this as well. Doses of up to 4000IU per day are usually classed as safe (but take it with Vitamin K2-MK7, to direct the calcium away from your arteries and into the bones). Also, a lot of Vit D is stored in fatty tissue, so if you are a bit higher in weight, your Vit D3 requirement will increase as well! Take the Vit D3 with a good Magnesium supplement as well (Mg-citrate or glycinate), as this will help with the absorption.
Re: asking for a thyroid dose increase: The provider didn’t mention increasing my thyroid and thought it “looked good” and I’m only just learning now that my levels aren’t really optimal at all. I have been prescribed in the past (by another provider) an extra 15mgs of Armour to take later in the day, but I was forgetting to take it (even with a phone reminder) and having anxiety and palpitations when I took it, such that I didn’t continue it.
I could start it again though. I already have it. So then I’d be taking the 1 grain of Armour in the morning and taking the extra 1/4 grain at around 2pm in the afternoon and seeing then where my labs fall after doing that for a month or so?
That's the problem with health care providers, as long as the levels are somewhere in the reference range (even at the very bottom), their job is done and they are no longer interested it is the same here in the UK. If you have the medication, I would try it, maybe a very slow and steady increase rather than all at once, since you react strongly to it. It might be that your body just needs to get used to it. With regards to anxiety and palpitations, this can happen with a high dose of thyroid meds but also when you are under-medicated - try to persist. Good luck!
So regards to your thyroid meds - yes you need an increase. But I recommend you take care of your iron in this post, and then we can tackle the thyroid 101 of TSH, FT4, FT3, and key vitamins B12, Folate, and D in a separate post. Those will be whole conversations on their own.
Keep in mind that most people here are from the UK, and that matters because our healthcare systems are so different and fundamentally changes the kind of care and treatment we get. Although it is apparently a very global problem how little doctors know about thyroid and vitamins, so before you go switching doctors, let me know what kind of insurance you have and what kind of doctors you are seeing. You can probably get what you need, and chances of finding a more knowledgeable doctor is not a sure thing!
I've seen people take 1-2 a week all the way up to 5 a day. I won't go into the math about each of those options. Here's the important part.
You need to learn about how your body absorbs iron. Everyone is different. But with your ridiculously low numbers, if it were me, I would do either of these depending on when I could test next:
* I would try to test no later than 8-9 weeks. If you do, I would start with 2 a day.
* If you can test again in 4-5 weeks, at your levels you could take 5 a day.
Chances are 2 day will make little impact on your ferritin, but you need to see how your iron reacts - which is must quicker to rise & fall, and which is the key indicator for excess iron in your body.
For example, my daughter took 2 a day for 5-6 weeks, her iron went from 49 (under range) to 210 (over range) and her ferritin went from I think 7 to maybe 13? Now I dropped her to one every few days for this current 5-8 week period. For me, before I supplemented, my iron tanked from about 160 to 70 in the same time period. Iron is like that.
And most important, excess iron over time is toxic. Your body has no way to excrete it, and it settles in your organs, causing permanent irreversable damage. Being too high for a month or so probably won't kill ya, but in my own cautious approach I would rather start low and go slow than overshoot. That's just me.
Ferritin on the other hand is the prize... and it moves slow as molasses. It is your body's storage cabinets, so you need to find your own homeostasis in supplements to stay within the 55-70% iron range for your body to feel comfortable enough sending some to storage.
This is a long haul... you need to test and learn in every 6-12 week period until you find that balance. Don't expect fast results.
A few other points about Three Arrows - which is heme iron. It absorbs 3x better than non-heme. You do NOT need to take it with vitamin C at all, you can take with or without food without GI upset like many get from synthetic iron pills... BUT you still need to keep it 3-4 hours on either side from your Armour. Iron will block the effectiveness of your thyroid hormones in your stomach AND in your blood. Also, some foods block heme and non-heme iron alike - livestrong.com/article/2843....
I think this should get you started. Let me know what you think, and if you have any other questions.
Disclaimer - I am not a doctor. I share my own experience, from my own very cautious point of view, reflecting what I see works. But every single one of us is different and I know nothing about you other than this one post!
RE: …I recommend you take care of your iron in this post, and then we can tackle the thyroid 101 of TSH, FT4, FT3, and key vitamins B12, Folate, and D in a separate post.
Thank you so much, and I agree. In trying to conquer all things at once, and in just a weeks time, I’ve gotten myself overwhelmed. I will keep reading here and learning more about anemia 101 first. I have to say, now I finally understand why I have been craving and wanting to chew so much ice! 🧊🧊 I had no idea about the correlation with low iron and anemia and desire to do this. I’m just glad I haven’t cracked a tooth in the process! 🦷
Hi from Tucson - your iron levels look a bit like mine were last fall. The anemia had been going on for a while but, as many low iron signs/symptoms are similar to hypothyroid symptoms I had been taking too much thyroid meds to compensate. OTC iron likely won’t bring up your levels - even high dose prescription iron could take six months or more to bring levels up to just within range. If you can tolerate them - which I couldn’t. You do need to see a hematologist, who will begin by running all the appropriate tests. If you can’t tolerate iron supplements iron infusions will restore levels quickly. In the US it’s usually iron sucrose infused in over a couple of hours. Painless, no prep - just annIV - and can drive after. Few, if any side effects - most are rare. I told my docs I’m simply too old to spend six months or more to feel human and I’ve put my thyroid meds back down to appropriate dosing again.
Iron infusions are actually one of those things that aren’t talked about as much here because I think they are so hard to get in the UK without spending a ton.
SugarMint definitely an option to look into if you get yourself a referral to a hematologist. To Patti’s point - your entire panel is just so low that I bet you are a good candidate for it.
If you do find out info lmk! I don’t know enough about it and so am just cautious, although I don’t think there’s any reason I should be!
Hi- Thank you. I wrote to ask primary care person for a referral to a hematologist and got this back “There are risk to iron infusions. I would encourage you to continue the oral iron”
The Three Arrows heme iron is shipped and on the way to me though and I’ll give that a try as so many others have had success with it on this forum.
Understood. I’m working on finding someone else. Not sure how things work in Arizona, but where I live in North Carolina, any halfway good primary care doctor either is not accepting new patients or is booking out into the summer, and no hematologist that I’ve called will even talk to me without a referral.
The heme iron will be what I’ll try in the meantime.
Hi- I have what I think it pretty good health insurance and I pay a hefty monthly premium for it. I have a PPO plan through Cigna. With this PPO, I do not need to select a primary care physician and can see any provider, in- or -out-of-network, without a referral. If I choose to see someone out of network, I am reimbursed 60% of my out-of-pocket costs.
The receptionist and/or schedulers I am getting when I call the Hematology offices are the gatekeepers here saying I need a referral, and not my insurance plan. I tell them I have a PPO and I tell them I have all my lab results in my possession that I can send them but that hasn’t helped. I’ve written to several places overnight to request just a basic appointment and I’ve started putting my iron panel results into the body of the message itself.
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it is the same here in the UK. If you have the medication, I would try it, maybe a very slow and steady increase rather than all at once, since you react strongly to it. It might be that your body just needs to get used to it. With regards to anxiety and palpitations, this can happen with a high dose of thyroid meds but also when you are under-medicated - try to persist. Good luck!
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