Please see my prev post for my iron results. Since starting levo last year I have felt increasingly unwell on it. Mainly crippling joint and muscle pain which isn’t present when I’m not taking it, unfortunately the introduction of t3 at end of last year has only worsened this too. I can hardly walk. I know t3 isn’t a quick fix but it does feel like it’s making me much worse.
Could my low iron results be the cause of this intolerance?
I’m feeling totally lost with it all and just feel more and more in pain whilst taking these meds. (Bloods due next week so nothing to share rn)
Low iron doesn't create an intolerance for T4/T3, but low iron does interfere with the production, transport and cellular use of thyroid hormones.
On the other hand, low thyroid hormones can also interfere with iron, by impacting the production of red blood cells, which can trigger low iron.
Research shows about 60% of people with hypothyroidism are diagnosed with anemia. vs about 5-10% of the general population.
I'll also say that for you, your transferrin % saturation below range, and it needs to be a minimum of 30% and optimally between 35-45% for T3 to do its job. So you will be feeling the effects of that.
Looking back at previous posts, did you ever follow up with your ANA results - lupus, or RA as that might suggest?
Thanks for your reply (on both my threads!) that makes sense as my t3 has dropped recently so I guess maybe the iron panel could explain why. I just feel like I’ve crammed all these thyroid hormones into my body and they aren’t being used which is causing me all the joint pain and stuff.
So I have had a rheumatology appointment last year and they’re just keen to tell me I have fibromyalgia(which I don’t) I was told that my ANA was negligible and not to worry about it. My tests are negative for RA but to be fair they are still looking into lupus. I do have a follow up there in April to discuss my results (I can see on the system that some of them are a bit wonky or out of range) I also saw a neurologist end of last year who told me there was nothing wrong despite my abnormal test results and symptoms and that I should see a psychiatrist which felt deeply unfair and I left the appointment in tears. He spoke over me the whole time too. That whole experience has meant I haven’t contacted my GP for months.
Hi GreenTealSeal, just sending you some comfort in a message for your awful experience with the neurologist, it is so upsetting when we are so ill and treated as if we are just imagining it. Just remembered though that Psychiatrists can and do prescribe T3 so maybe that was what the neurologist meant . Anyway, you must have been really upset so here's a hug of sympathy (and a nuzzle from a very big fluffy white dog)
Ah thank you, that’s so kind, always happy to accept dog nuzzles, haha!
I wish this were the case but he actually didn’t know what liothyronine was and I had to explain. He spoke over me the entire appointment and would not let my partner (who I wanted to attend with me) ask any questions at all.
He also asked my profession and before I could answer he suggested I was probably ‘a house wife’ which was a bizarre presumption and weirdly sexist. (Would he have been so quick to suggest a man was a house husband!?) Just seemed super weird and in the end he suggested my symptoms would probably just go away by themselves (which is insulting considering they have become steadily worse over the last 4 years)
I waited nearly a year for the appointment but felt really uncomfortable and couldn’t wait to get out of there to be honest.
I am supplementing yes, my latest levels are attached.
I am on TEVA 50mcg and 5mcg cytomel but if I’m honest on this dose I am finding the limb pain crippling. I often wake several times at night because it’s so bad. I am a smallish person diagnosed with subclinical so I’m wondering if this dose is just too much for me. 75mcg levo alone was too high for me and caused the same symptoms.
I have also been on 2 other brands of 50mcg in the past and the same issues were present. (Accord and can’t remember the other sorry!)
My most recent results were:
Tsh 3.6 (0.27- 4.2)
Ft4 18.1 (12-22)
Ft3 4.3 (3.1-6.8)
I know it probably isn’t possible but I actually feel MORE hypothyroid with the addition of t3. I was initially on 7.5 cytomel earlier last year but it made me feel extremely over medicated (diarrhoea and incredibly foggy and tired) and shot my h1abc up quite a bit! I just seem to continue having debilitating side effects on any dose or adjustment for the last year. I get tremors on anything over 25mcg and it doesn’t seem to go away.
Yes, inadequate iron levels can impair how thyroxine works as is required on multiple levels within thyroid physiology.
And yes, sometime starting Levothyroxine can worsen an existing iron deficiency as ramped metabolism increases erythropoietin levels and improves erythropoiesis (which is good), but this leads to increased requirement of iron.
Also the elevated inflammation commonly seen in unmanaged Hashi-hypo not only puts more iron into storage (ferritin) but changes the way iron behaves leaving less free in circulation by several mechanisms. However, you results in previous post show a huge genuine deficiency.
Others have already advised supplement suggestions.
Thank you for your reply. My ferritin was 40 when I started on levo but in the last year it has slowly dropped. I was over medicated for a few months so not sure if that may have had something to do with it?
I sort of just feel like I have all this t4 floating about in my blood and it’s not being used so it’s causing these horrid side effects which I didn’t have before I took it.
I’m not hashis as my antibody tests have never been positive.
I have an endo appointment in a couple weeks so hopefully they can help advise too!
Personally I would see a private thyroid Dr not an endocrinologist, or a functional Dr who is good with thyroid health, especially for your complicated situation.
Thank you, sorry I always call them endo but they are a thyroid doctor from the Thyroid UK list. They’re the only doctor that has actually made me feel listened too. NHS has just treated me with total disregard to be honest.
I do feel that my case is super complicated and I’m just left feeling like I have no idea what’s going on with my health….which is really frustrating and upsetting.
I have 2 lists from them, one doctors and the other is endos. The one I’m seeing is a GP specialising in hormone and thyroid health. I have PCOS too so feel this complicates things even more but they seem knowledgable about that condition too. It’s hard when doing things privately to know what to spend and who to see!
I was put onto T3 only but I could not tolerate it at all unfortunately. I only lasted a few weeks as it was making me so ill I was completely bed bound, no appetite. I spoke my doctor and they said to stop it immediately.
I started Levo for the first time in 2013. I was very ill at that time for non-thyroidal reasons. I was also extremely low in both iron and ferritin.
I couldn't tolerate Levo at all at that time. I also had the problem of absorbing iron extremely poorly.
In the years since then I tried NDT, Levo + T3, and eventually T3-only. I did okay(ish) on T3 only (but my standards were extremely low in terms of quality of life), but intermittently I would try Levo just to see if anything had changed.
Eventually, in 2021 I found that I could tolerate Levo for the first time, and for a while I tried Levo only. Since then I have added some T3 to my Levo dose and am still trying to optimise my doses of both. I feel better now with both T4 and T3 than I did with T4 alone and T3 alone.
I think my tolerance problems were caused by my very low iron and ferritin. It took nearly 2 years to get my ferritin up to mid-range, then I maintained that level for another five years on a maintenance dose of iron supplements. My low serum iron didn't start to rise until about 2020/2021. I gave up supplementing iron when I was happy that both my serum iron and ferritin were both at a reasonably good level, but I still monitor them twice a year. And I'm sure it wasn't a coincidence that my reasonably good levels of iron allowed me to start tolerating Levo for the first time.
are so bad that I think you should try and get an iron infusion done, preferably by the NHS, but if that is impossible then saving up for a private infusion would be a good idea, but they aren't cheap. If you've had problems with low iron all your life it could take years for your iron and ferritin to rise. (As I said above - it took me seven years, despite no longer having periods.)
It would be worth finding out now how quickly you manage to raise your iron and ferritin levels. If your levels are slow to rise then you wouldn't have to test a new iron panel so often. But until you know that you should do an iron panel fairly frequently (every 6 - 8 weeks?)
...
One of my iron-related problems was that whenever doctors discovered I was anaemic (i.e. my haemoglobin was below range) they would only prescribe 2 or 3 months worth of iron supplements. This was never enough. I discovered I could buy the iron supplements the NHS prescribes without prescription in 2013. Once that happened I abandoned the NHS in connection with my iron and just bought and tested my levels myself.
Thank you so much for your reply! It’s so interesting to hear your experience and in regard to tolerating levo and t3. I must confess that last week I totally abandoned taking my thyroid meds. (Yes I know this is a bad idea but I just feel so crippling awful on them I absolutely cannot cope at the moment.) I’m wondering if my iron problems are why I’m having such an awful time on levo or t3!?
also thank you for reassuring me that my results warrant some action from GP! I’ve been putting off booking an appointment because I had such an awful one at the hospital last year that left me feeling very patronised and in tears. But you’ve made me realise it’s definitely needed so will book an appointment now. Medichecks gp didn’t seem too fussed by my iron results and just said to eat more iron rich food so am anticipating nhs gp to have the same reaction…but absolutely going to push for more because I’m tired of feeling awful.
One thing I will say is that I have had iron supplement prescribed by gp before years ago and I find it so hard to tolerate as it gives me tummy pain and upsets so would it be okay to just take the three arrows instead if they won’t do an infusion?
Thank you so much for your help, not sure where I’d be without this forum!
Yes, I would definitely suggest trying the Three Arrows (heme iron) before trying the iron salts (ferrous sulfate, ferrous fumarate, ferrous gluconate) the NHS prescribes.
I raised my iron with iron salts but I would try Three Arrows first in future if I have to supplement iron again. Because the iron salts are just sooooo slow.
When I took the iron salts the only way I could tolerate them was by taking them with food.
Ah thank you! This is good to know! My three arrows actually arrived today so have gotten started using their dosing advice which another user kindly linked me too over the weekend.
I think it was fumarate I had before, I didn’t realise it was so slow acting, i was told to only take it for 6 weeks. it was so harsh on my stomach even with a big meal. Bleurgh!
I doubt ferrous fumarate is so slow in everyone. But I always assume that people who have suffered with really low iron for a very long time - possibly their whole lives - probably have very poor absorption of iron.
Another issue is that iron salts are poorly tolerated by a lot of people who try taking them. If you can raise your iron with heme iron products that will be better because they apparently don't cause the same issues of poor tolerance.
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that makes sense as my t3 has dropped recently so I guess maybe the iron panel could explain why. I just feel like I’ve crammed all these thyroid hormones into my body and they aren’t being used which is causing me all the joint pain and stuff.
Intolerance to thyroxine ? 
Can low T4 when taking NDT cause hair loss ? 
low iron 
Hypothyroid - How to best supplement with iron
TSH at 12/low iron
