My 3 year experience with hashimoto, low ferritin , and fatigue symptoms and how to move on?

Hello , in 2011 hv been diagnosed hashimoto, my TSH was constant around 4 for years, and all of my fatigue i subscribed to my anemia problems that went on for years. I am on levythiroxin 150 mcg now, and TSH below 1, but ft3 even lower then when i started therapy 3 years ago. My ferritin level has never gone higher then 34!!! It was as low as 8 but stabilized around 30 , actually i can feel the difference between 34 and 30 because at 30 i get sounds in ears and hair loss!

Now my ft3 fluctuates in a small range between 3 and 4.3(where i feel good), and i came to conclusion that either my low ft3 is causing my fatigue, or low ferritin levels, or those are very connected due to conversion process from ft4 to ft3?

And i asked doc for a combined therapy, i would like your thoughts on that he gave me 100t4+ 25t3 to replace my current 150 mcg of t4 only?? Should i make somemgradual chnage?

And on my ferritin issue! I just dont know what to do i have been taking iron supllements with very short breaks for 6 years now! Every single day 100 mg, and this is where i got to from 8 to 34 max, and have kind of calculated that my body absorbs maximum 1 mg of that whole tablet, becasue in the last 2 years i took my iron half of the month after my period( my periods are so normal that they can not be better) it takes me 10 days or so to come to even terms with what i lost during my period,

I am afraid i w taking this iron for 6 years now, so i started skipping, and worst not seeing any improvements on it.

Now thinking that combination of t3/t4 may solve my problem? I did notice that my fatigue is worse wehn my feritin below 34, and my t3 at 3 instead at 4.....

Can anyone please share experience becasue i think this is whats keeping me from feeling better overall, is there a connection to those 2 problems or they are separated and which should be solved 1st, because it feels i am thyroid hormons lab are stuck with ft3 beeing bad, like never before, and my ferritin dropping from 34 to 30 only if i dont take iron supplement for 1 month!i.e. 1 period

Thank you so much....i also made a chart where it shows that my t4/t3 ratio moved up as my t4 was increasing, causing my ft3 to worsen over time

36 Replies

  • Welcome to the forum, Ivy.

    Can you post recent thyroid function results with the lab ref ranges (the figures in brackets after your result) as it helps members to advise and comment.

    It is usual to decrease Levothyroxine (T4) by 50mcg when adding in 20mcg Liothyronine (T3) as T3 is approximately 3 times stronger than T4. It does presuppose the T4 dose prior to reduction was optimal. You don't need to taper off T4 first. It's best to halve your T3 and take the first 1/2 dose with T4 and the second half dose 4/8 hours later. Suck it see experimentation will tell you when the 2nd dose is required. If you feel a midday or afternoon slump after your first dose this is a sign that the 2nd dose is required. As your FT3 level improves you'll be less susceptible to slumps.

    Low FT3 and low iron will both cause fatigue. Iron is better absorbed when each dose is taken with 500mg-1,000mg vitamin C which also helps mitigate constipation.

    Vitamin D, B12 and folate deficiency are common in hypothyroid patients so it is worth having these checked. Good vitD levels are needed for T4 to T3 conversion.

  • I did lab result for d3 the 25 one, and was above lab low reference rate, i did calculate its not optimum but on that lower side, tried taking it was feeling good, but then my black spots on the skin( dont know the english word) started beeing sensitive to it, w taking 3000 ij daily for 3 weeks, so i stopped, i measuree my b12 it was so high in my blood! Now does it mean its high in the blood because not absorbed by my cells, or this is good that is high in the blood? Hv no idea.

    All in all seems like my vitamin lvls are fine, just ferritin is really low...and noone makes a problem out of it and if i dont take iron i feel like a sorry to say this....

    For the last 10 years i live under extreme fatigue , that i could not drive a car! Was getting panick attacks just commuting, this all is now much better after t4 therapy, but with it i went through hell, like hot flashes when doses went above 65 mcg, and my doc never cared,

    And i just think my ferritin will never move from 34 and even if i go to 70 as soon as i stop taking iron it will dropp......

  • Ivy, some people have to supplement iron every day of their life to prevent their ferritin levels dropping. Try it with 500mg-1,000mg vitamin C. It will aid absorption and there is less chance of becoming constipated.

    High levels of B12 are acceptable if you are supplementing and excess will be excreted. If levels are high without supplementing your doctor should investigate the reasons.

    Black spots on the skin are usually moles which are raised freckles.

  • Exactly moles became sensitive and hurting even after i was taking this vitamin d3 so i stopped , i am supplementing irregularly now b complex, i can not swallow so many tablets per day, i have no problem taking iron supplement, luckily, not even the recent 2 years i did have 3 times for 1 week some problem with my stomach in a way that it got inflamed, i am not sure what caused it, but i really had never any issue with my stomach.......i do feel some very small pain when i am hungry for few days, or ill lyingin my bed for a week, but that pain is just one of like changing from ackward position.......

    Yes it looks so i will have to take iron all my life, but my family made me worried that i should not take it......and it looks like i cannnot do without it....i probably deveoped some gut bacteria that like it too:-)

  • Ivy, some supplements can be administered as powder in drinks, sprays and patches if you have difficulty swallowing tablets. Amazon are a good online source

  • Firstly your ferritin MUST be over 70 or you cannot convert the T4 in levthyroxine into the T3 your body is screaming for

    You MUST take iron plus at least500mg of Vit C 4 hours away from thyroid meds and until your ferritin reaches over 70 you need t3 alone not levothyroxine

  • Thank you so much for your answers i will try to post graphs of my lab results and write the reference levels, the thing is my doc will only prescribe combitrex wich is some medicine that has 100 mcg t4+ 25 mcg t3 fixed, so i can not change it, i would like to split that then into half and take it 2 times a day? I asked the doc, but it seems he doesnt understand that t3 is volatile compared to t4, and yes i have read about vitamins that help coversion but nothing really helps me if i dont take iron supplement, and i w taking them so to say without the knowledge of my doc, and was afraid my doc will not give me iron every single day throughout the year, but it seems its workingonly like that and EXTREMELY slowly, because each month i loose 10 mg, and if i absorb 30 mg per month that is best 20 mg per iron lvl in blood seems fine then, but ferritin is so stuck , because each summer i take a break, and for the last year i am taking iron only for headache after period, it makes sense i can not convert t4 to t 3 without ferritin, i had worst t 3 now in 3 years, and am taking 150 mcg t4, and no iron supplements for month or so..........and taking all other supplements like b complex in high doses, from pure encapsulations they really have good formulas, taking probiotics, drinking betaine hcl to increase absorption of minerals, eating meet, black currants and all those healthy stuff, gluten free, i w obsessing about healthy food, and then results so bad, i did feel bad for 2 weeks prior my blood test, could it be that t3 can fall within 2 weeks only?

    Now i felt how important or crucial iron is for me, its matter of life or death to me, my breathing well being it all depends so much on it, and i absorb so little, i dont take such high doses of vitamin C , i drink just half a lemon? Could it be that?..... for ferritin lab lowest range is 30 and i am there now, and so for the last 6 years as i follow it, that i gave up on it........

    Now am almost sure my doc does not know how to treat patients with t3 only, and am sure he doesnt even want to give it to me, and i would be scared after all the problems with heart bearing etc.......mental fog i dont have it so much after all those supplementation and watching my diet, its summer time so its much easier to me, but my t3 is at 3 now , lab range is 3.1 minimum, and when i started therapy 3 years ago it was 4.3 it started rising on a therapy for the first few months then dropped as t4 does went over 50 mcg, and since then is fluctuating from 3 to 4 max......

  • Ivy, why do you stop taking iron periodically? Wouldn't it be better to continue taking it until your ferritin level improves? Good levels aid absorption of T4 and T3 but you'll still absorb T4 and T3 when ferritin is low, just less efficiently.

    Perhaps your doctor could prescribe additional T3 with Combitrex to improve your FT3.

  • I stopped out of worry that its not normal to take iron every day 365 days a i thought i may try.then to minimize the intake i am taking it 10 days a month, nut now i will take it every brother told me i will get stomach problem taking so much iron, and doctors would always say take it for 3 months then do a break, and i do a break and all goes down the drain

    I asked doc for t3 only medicine, he doesnt want to hear about it, i guess he lack a knowledge! The only thing he said will give me is this combitrex forte, i suppose this will be better then 150 mcg levothyroxin i am on now.......its huge lack of knowledge here in croatia, that i feel so miserable, this combination therapy is what i asked from him! It was not his idea at all

  • where do you live ????????????

    because combitrex is not a UK medication and you are not making a lot of sense

    need to know the reference range for your ferritin result because in the UK its 6 to 150 and thus in order to be able to utilise the T4 your ferritin MUST BE HALFWAY ie 70

    theres research to support this which your doctor needs to read

    There zero to stop you taking iron every day but YOU MUST take at least a 500mg Vitamin C tablet with it

    half a lemon is inadequate

  • Hi reallyfedup123, could you give a link to the research about ferritin needing to be above 70, It would be useful to show my doc, thanks.

  • I live in croatia, and ref for ferritin is 30-200, my result is doc is so ignorant, and i pay him 100 eur almost per visit!! And i have asked him to measure my ferritin this was not even his idea too...i am doctor to myself and i just get distracted by them, they should have encouraged me to take iron and prescribe it and not saying i have bad stomach, and gave me 2 antibiotics plus proton pump inhibitor to erradicate h.p. i refused that in disgust.....actually i did take one fo those antibiotics trying to do that.....when i think better this doc is such an idio.t

  • Sounds like to me you are better off not bothering with even seeing doctor but treating yourself

    You can get T3 from various EU countries without prescription

    clearly your ferritin must be treated urgently with iron and high dose vitamin C which will also address adrenal fatigue

  • Yes i will def do that, i am afraid to treat myself, actually i think i have enough knowledge to do that! My doc knows half of what i know, but the only problem is getting t3 without prescription, i dont know who would give it to me? I read many issues with taking t3 this is why i came here to see wht people saying about taking t3

  • Until your ferritin is halfway up in the range of your country you simply cannot convert the t4 in the meds you have been given

    So stop taking the combi stuff

    get iron plus 500mg or 1000mg vitamin C and start taking that at least once a preferably at lunchtime

    take all your other vitamins last thing at night on empty stomach when they are best absorbed

    folk will PM you sources of t3

    just start with only 10mcg of T3 and do not even try increase for at least 4 weeks

  • My doctor is far from reading a research , its such a miserbale state that they dont need to know anything just prescribe pills and target TSH, which is even good, some dont even target TSH, so many patients around whoes docs dont want to treat thyroid with obvious symptoms and tsh at 5 (0.27_4.2) i should be grateful this doc was first who told me i have thyroid problem at all:-(

    I read a lot of things and heard abput that ferritin lvl, but was confused because my doc told me it will get sorted when my hormons get sorted out......

    I just took 1 lemon with my iron:-) ...i thought supplementing betaine hcl pepsin would increase my stomach acid so i absorb more of iron.....instead takingnhigh vitamin c doses but also understand me i did all by the ook for the first several years , i saw no long term improvement that just taking iron is what i do and a little bit of lemon b complex for a while then i stop etc.....becasue the results are just to pale compared to the amounts of tablets

  • What sort of iron are you taking? What dose do you take? Does it say on the packet how much elemental iron is in it? I'm just wondering if you're taking a brand that your body isn't absorbing well.

    Have a read of this:

  • I was taking one irron that seemed to help and they stopped producing it, now i take one that i felt sick at first but obviously addapted to it, my body needs it a lot, plus i do sports 3 times per week, iron 2 fumarat i take now, i feel it in my breathing when its helping contains 115 mg of iron.......i take after periods 2 per day for 5 days i save the tablets so i can live through the month , becasue afraid my doc wont give me another box so soon, ........this was the reason i stopped taking it because i was taking on my own every day iron, becasue i felt i need it......and no doc told me to take it 365 days per year......

  • A-ha. Exercise. How strenuous? Did you know that exercise depletes iron stores? When you work out vigorously and sweat, you lose a small amount of iron through sweat. If you run or do high-impact exercise, the impact jars your kidneys and leads to microscopic blood loss that depletes iron.

    There’s also the phenomenon of “heel strike anaemia” in runners. This is iron deficiency anaemia that comes from the force of the heels striking the ground during running. This compresses blood vessels in the feet and crushes red blood cells, leading to iron deficiency.

    I think you need to take iron twice a day everyday (with 500mg Vit C each time). 5 days a month is barely going to make a difference. You probably won't need to take so much for ever but certainly until your levels are above 70. Do you eat well? Do you eat meat?

  • I dont think i do a lot of sports, but many times i did feel like its too much for me, just because i was not healthy enough and not that it was too vigorous , becasue other people could normally do it, never ran longer then 6.5 i did not have a feeling i overdo it.......and for the last 1 year it was even more moderate then before and i see no difference in my iron, and if i dont do sports i feel even worse like my metabolism stops! And within 2 weeks i have water retention in abdomen....i can not understand friend does no sports and has thin waist:-) i must do sports to feel like normal human beign......and not feeling bloated

  • So you see even she says it takes 3 months:-) noone says it should be taken 365 days:-) and i took it without questioning like this for 3 years:-) then i started question it....becasue at a time i need iron just to breath and also if i did not take it i would get spine pain :-) ...and visit a masssage to unlock me:-) .....after 3 years of taking it every day i started questionign...

    Now inflamation, what does that mean, i took off gluten so it did not help in any sense , just reduced my PMS, or is it an increased fat?? I think its the fat that reduced my PMS but saturated , not oils.....i take coconut and olive oils only...and butter and creame:-) and meet fat....but as you see i must have some other problem, i suppose looking at stomach noone has it perfect, so if they find something ...i dont care as long as it doesnt solve it..taking antibiotics is out of question for me.....since i have no problems with stomach...never had any and am 37 now, so small problems during the last few years i dont think matter, i heal it all with lactobacillus in higher does in yoghurt within 3_5 days

  • I want to add to this all that i have breathing problems when my iron starts falling from time to time i notice this, i ask a i feel it more then when i was in worse shape before........

    It just amazes me how many things helped me in the last 7 months, magnesium with headaches....betaine with energy...but somehow it all stops working when one link is missing, so i feel not so good now, probably becasue of iron, i started taking it yesterday i feel hungry again, for 2 weeks i lost amazes me how quickly i loose it...and how my life depends on those stupid supplements, and i am hoping that new therapy t4/t3 may help me here?.....waiting for my tablets to arrive, next week

    Thank you al so so much for very good replies!!!

  • I found this to be pretty informative regarding T3 and reverse T3. You can click on whatever link in the header which relates to your questions. I think the T3 will help but if the T4 is interfering with the process, you may need to drop more of it and maybe all of it.

  • Thank you very much!! Now i have to persuade my doc to do that with me!i will insist since i pay him!

    Btw it cannnot benthat in 6 years out of wich 3 i was taking iron every single day i could not move ferritin for a dime!! Its just impossible that vitamin c is the key when i was doing all by the book at the beginning, i am the classic case of people who have low ferritin and am probably not the only one with this issue, one member here wrote about celiac girl whos ferritin dropped when TSH increased, there must be some explanation and solution to ferritin problem, supplementing for the rest of the life? Why what happens its not moving etc etc.....all sorts of questions ..i would need answeres to....i hope combined therapy will helpe, becue when i was starting t4 i felt so good, and then the good feel started waning after we went above certain levels! I was coming back....then its just moving down, i read that fatty acids in blood can make t4 conversion bad and this is probably that w happening too, i increased fats by several times, but i have benefits like no feel of inflamation around pms, and all other good things.....

    Thank you so much for help

  • Hi ivy, My ferritin was over range quite to my surprise because my FT3 and FT4 were low although TSH was also very low. I had been taking a little juice each day and putting in some powdered ascorbic acid and liquid vitamins, mostly B and some vitamin D3 with K2. I found out that C binds to iron and raises levels. Since then I've dropped the Armour and take entirely T3. I haven't had any testing done yet but I think I see improvements in a few areas. It takes a while for T3 to changes things around getting rid of reverse T3, helping with adrenals, etc. You may find you need to also go on straight T3 for a while. I wish there were a way to know for certain whether T4 is causing trouble for certain but I know it can.

  • Cheers, Heloise, you've just explained why my ferritin was very high in November. FT4 was low and FT3 below range.

  • Hey, didn't I say we were twins?)

    If you are curious, I recently had an ultrasound of my thyroid and had been told I didn't have one after years of Hashimoto's but there it was in gray on gray. I was surprised. They found a small cyst and a tiny nodule. (I thought I might have a goiter but did not, I guess).

  • Heloise, was the thyroid small? Hashi atrophies the thyroid until it becomes a nut of unproductive fibrous material. Anything being done about the cyst?

  • I asked the technician if it was thinner than normal because it looked to be almost the normal span. She said, yes she thought so. Next appointment I may get to discuss it with my P.A.

    I gave up on Endocrinologists. As in the UK, they treat more diabetics. So seeing just a Physician's Assistant, I do not expect very sophisticated diagnoses. She has no treatment in mind and the nodule is too small to even biopsy so will just check it in six months.

    Now why couldn't my tonsils shrivel up instead as they are causing some blockage.

  • yes i just analysed my data agian and it looks like excesses of t4 are just not doing me any good, and putting me into fasting state, dropping my blood sugar levels, dropping my ft3 lvls...........

    but one very weird thing! i took 3000 i.j. of d3 2 days ago, and yesterday i felt again my moles sensitive to touching! even hurting! amazing, and my d3 lvls were just slightly below ref range.. at 72 ( range is above 75) i can not supplement with vitamin d3...its also a hormone, not normal vitamin...and i was supplementing it for 10 days when i first noticed that reaction...then i stopped....and tried 2 more times and one time i just had my mole hurting badly!

    high ferritin levels indicate inflamation....inflamations decrease thyroid hormones....

  • Do you know what level of reverse T3 you may have?

    That's wonderful that your D level is so good. I don't know why it would affect your skin like that. I haven't been able to raise mine above 37 and when I took it without D3, I formed a bone growth on my jaw where my wisdom tooth used to be (torus). I recently read that can happen but now they include K2 with the supplement. Right, D is a prohormone.

  • i dont know my reverse T3 , i asked the doc if there is lab test to be done in my country i did not see it in labs i visit !..........

    i have no idea why it affect moles only! and its so weird...then i thought of sun expsures and melanoma and moles! maybe thats the connection hurts too much to continue supplementing...i was scared

  • Ivy, have you tried taking a smaller dose of D3, say 1,000iu to see if you can tolerate it?

  • no after this one dose at 3000 i.j. i am just not takign it, i will take 3 weeks beach vacation.....i am really scared of the effect esp cause it takes 5 dazs for irritation to calm down, vitamin d3 is prohormone and its fat soluble so its not getting out that easily, also i read that the first one 1.25 is the active one and i did not measure i just quit , i dont need it :)

    @Haloise, well my vitamin D3 if you convert it to those USA units comes out to be around 32 i think, and most recommend it to be 40-70 but not above measurment is still marginaly lower then lab range of 75:) so its not that perfect.....but i wont supplement it no

  • I eat every morning quite an amount of cottage cheese, and drink 2 l milk per week, could my high calcium be culprit that i am not froming ferritin for 6 years?.......i read vitamin c increases absorption by 30% so it can not be culprit for me not moving in 6 years

  • I really don't think we get that much calcium from dairy products but I'm not really sure.

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