This is sort of related to my recent post about generally feeling unwell. My GP says there’s nothing wrong with my levels and thinks I should go on anti anxiety meds. I disagree!!
Do these test results (look at the far right column, they’re the latest...30th Oct 2020) mean anything to anyone?! I understand Ferritin (range 12-250); I finished 3 months of Ferrous Fumarate (210 twice a day) on 25th Oct 2020.
I take 100 levothyroxine every morning for my underactive thyroid. TSH was 1.3 in July 2020; it hasn’t been tested since.
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Your ferritin should be higher. Without ranges it's difficult to tell but your red blood cell count looks okay. Haemoglobin looks okay. Your mean corpuscular volume looks good if your range is the same as the range my lab uses, which indicates that you're not under-medicated. The ferritin is the only issue I see, are you supplementing? Do you have numbers for T4 and T3?
Thanks for replying! No T4 or T3 😢 T4 was last tested in 2018 when my TSH skyrocketed after taking a lower levo dose (50) post pregnancy. I swiftly went back up to 100 levo!
Are low level haematocrit and lymphocyte count ok? Not too significant? 🤞🏽
B12 tested in July 2020 - 254ng/L
Serum folate also tested in July 2020 - 16.1ng/ml
Vit D tested in July 2020 - 73nmol/L
I got given Ferrous Fumarate in July when my level was 9. I took it twice a day for 3mths (finished 25th Oct). As my level is now 28 and in range (12-250), my GP says it’s fine.
Your ferritin, B12 and vitamin D all need to be higher. Aim for ferritin of 100, B12 of 500 and vitamin D of 100. This would probably improve your red blood cell count and your haematocrit. Do you have any other health conditions which could be compromising your immune system or are you taking any immunosuppressive drugs? It's really important to get your T4 and T3 tested. TSH is not enough to say whether your thyroid levels are adequate.
I don’t take anything at all except levo 100 every morning and a Spatone liquid iron sachet every afternoon (because I feel like 28 is still too low for ferritin!). I don’t have any other health conditions that I know of - although my periods have been much heavier since the birth of our second child in 2017.
The GP said nothing about B12 or Vit D - she just said everything was fine 🤷🏽♀️
I’m going to see an endocrinologist for a full thyroid check 🤞🏽
Classic treatment of iron. Treat until somewhere in range. Stop. Months later: Put on greatly surprised expression when patient returns (possibly several times) and ferritin is low.
If you are low in iron, keep going with supplementation albeit possibly at a slightly lower dose. And get re-tested at sensible intervals. Otherwise you will be on the roller coaster between iron-deficient and just-about-enough-iron.
Yes! Exactly! Every time I get my ferritin into range, the GP says I’m fine (I’m not!), then it goes down again...up down up down...I’ve been doing it for years and I think it’s now really getting the better of me 😩
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
I don’t know any of the ranges, sorry 😢 Just that ferritin is 12-250.
No I’m not taking any vit D supplements. The only things I’m taking are levo 100 every morning and a Spatone sachet every afternoon (because the GP wouldn’t give me any more FF...she thinks a level of 28 is fine 🤷🏽♀️).
Whenever I remind my GP that I’m hypothyroid, she says “no you’re not, your thyroid is fine so you shouldn’t have any symptoms” (based on TSH 1.3)
Forget the Spa Tone. They are way too weak. Something like Solar Gentle Iron would be better, unless SeasideSusie recommends something different. And eat iron rich foods weekly.
I never recommend iron supplements, iron is too complicated.
An iron panel needs to be done to know if you are iron deficient, if you are your GP should prescribe and monitor regularly. As I asked before, was an iron panel done and did you have a diagnosis of iron deficiency anaemia? The fact that your ferritin keeps plummeting as soon as your iron tablets are stopped needs looking into. If you are iron deficient then it will show in your iron panel through serum iron and saturation % and if these are low your GP should continue to prescribe and monitor. Or maybe you need an iron infusion when your ferritin is below range, and once your level is good then you need to maintain it with either supplementation at the right level or iron rich foods.
I can't say whether you have anaemia because there are no reference ranges for your full blood count.
You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
I am successfully raising my ferritin this way; however, I am not iron deficient, just low ferritin, and my iron panel shows that my serum iron and saturation % have not been raised by eating liver, so if you are iron deficient it may be that eating liver wont help that, it's something you'd have to experiment with yourself.
My GP has never told me anything other than I’m low in ferritin. I once asked her the difference between iron and ferritin and she told it was “pretty much the same thing”! She always tells me I’m not anaemic so shouldn’t be feeling unwell...but I really am 😢
SeasideSusie serum iron was last done in Jan 2020 and it was 20umol/L. Serum transferrin was 2.8g/L 🤷🏽♀️ I can’t see anything about saturation anywhere. Ferritin was then 13. This was all in Jan 2020 so pretty out of date now.
Sorry, but reference ranges are needed with results to be able to interpret them.
Ferritin is our iron store, it's a protein that stores iron, releasing it when your body needs it. Think of it as a pantry and in your pantry you have a stock of tins of baked beans. You take out a tin whenever you want beans on toast. If you don't go to the supermarket to restock your pantry eventually you run out. So our iron store (Ferritin) has to be replenished with iron.
SlowDragon thank-you for the links you posted, the one on ferritin has helped me understand. I have a paper on the subject but it's difficult to follow the complicated medical language, this one is nice and simple.
Is your GP happy to just stop your ferrous fumarate now that your Ferritin level has come into range? It's still very low and needs a lot more work, it's recommended to be half way through range, although your GP won't know this because they're taught little to nothing about nutrients.
When your Ferritin level was below range, did you have an iron panel done? Were you diagnosed with iron deficiency?
I can't comment on any of those results without ranges except for B12.
According to "Could it be B12" by Sally Pacholok, B12 is recommended to be at least 550ng/L, preferably nearer 1000.
Vit D is recommended to be 100-150nmol by the Vit D Council, Vit D Society and Grassroots Health, so that would also benefit from improving.
Thanks SeasideSusie 😊 I was really unwell in July and all the GP said was that I had low ferritin (9) but she said that I’m not anaemic 🤷🏽♀️ She prescribed Ferrous Fumarate 210 twice a day for three months. That took my ferritin level up to 28 which she said was fine and again told me I’m not anaemic so I shouldn’t be feeling any symptoms...and then offered me anti anxiety meds 😩 She didn’t say my B12 or vit D were low 😩🤷🏽♀️
Does levothyroxine not work as well when certain vitamins are suboptimal? I didn’t know that. My TSH is fine though?! But I need T3 and T4 to be tested to really find out what’s going on?!
No it doesn't, poor vitamin levels affect the conversion of T4 (the inactive hormone) to T3 (the active hormone). And if your T3 levels are not optimal you will experience symptoms even with a "good" TSH level.
I will do both, thank you Zazbag 😊 Do you think that all of this - low ferritin, suboptimal B12 and vit D, and possible T4/T3 issues - could be making me feel generally unwell every day?! Headaches (sometimes migraines), brain fog/cotton wool head, off balance/walking on a boat type feeling, exhaustion, dazed etc etc?!
Low T3 can definitely do all of that. Improving your vitamin levels may improve your conversion which would help with those symptoms. You might just need an increased dose of levothyroxine but we can't tell without your T4 and T3 levels. Some people convert T4 well, if you're one of these people then an increased dose of levothyroxine could be the solution. You might not be a great converter though. So your T4 levels could be good but your T3 levels could still be suboptimal and be causing symptoms. In this case the improved vitamin levels should help but they may not help completely. You might be one of the unlucky ones (like me) who need to take T3 in addition to levothyroxine. But you won't know that until you get your T4 and T3 tested and improve your vitamin levels.
Another really helpful (and reassuring!) explanation, thank you. The GP has been so dismissive of my symptoms that I’ve really been doubting myself and constantly wondering if it’s all in my head.
That's the exact same experience that I had, I completely empathise. I call it institutional gaslighting. It's not in your head, I promise you. GPs just don't know anything about thyroid issues. This forum is the right place to be to get the help you need and I'm confident you'll start to feel better once you start following the advice you get from people here 😊
I'm so pleased to have been able to reassure, it definitely helps to know others can relate. Thyroid issues can be very isolating and depressing. Please post your thyroid levels once you've been tested! Also, you might want to go for methylated B12 and vitamin D2 + K3 in liquid form. Many people with Hashimoto's have a gene mutation (MTHFR) that means they struggle to absorb B12 unless it's in methylated form. Just search for methyl B12 or methylcobalamin. And vitamin D is fat soluble so liquid form (an oil suspension) will increase absorption and the K3 helps with that too.
Thanks Zazbag, this is all new to me, I’m learning a lot! I’ll look into it all. Woke up an hour ago (I often wake in the middle of the night...never used to have sleep problems but the last year has been awful) and I have another headache. Fed up with it all, would just like to feel better! 😩
I had a lot of sleep disturbances too because of my thyroid. I can relate, but help is out there! You'll start feeling better soon once you get the right information and treatment.
I really hope so, Zazbag; I just feel like I’m getting worse and worse. Haven’t managed to sleep tonight - yet! 😩🤞🏽Thanks for understanding, I really appreciate it 🌟
That's because they are within range and that's all they care about, as I said they're not taught about nutrients, but they're not optimal, and we Hypos need optimal levels.
To improve your B12 level you could take a good quality, bioactive B Complex such as Thorne Basic B or Igennus Super B. When taking a B Complex we need to leave it off for 7days before any blood tests because they contain Biotin and if the testing procedure uses biotin (which most labs do) then it can cause false results.
To improve your Vit D level you could take 3,000iu D3 daily, retest in 3 months. When you have reached the recommended level then you will need a maintenance dose which may be 2000iu iu daily, maybe more, maybe less, maybe more in winter than summer. You have to find your maintenance dose by trial and error.
There are important cofactors needed when taking D3 - Vit K2-mk7 and magnesium. D3 aids absorption of calcium from food and K2-mk7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissue where it can be deposited and cause problems. Magnesium helps the body convert D3 into it's usable form.
My GP keeps telling me that I’m not hypo because my TSH is fine 😩 She doesn’t think I should be feeling unwell because I’m “not anaemic with it” and really believes that it’s all a mental health issue 😢
I'd be tempted to say, "You're right. I should NOT be feeling unwell. The fact is, Doctor, that I AM feeling unwell, and you are not in a position to tell me that I am not. I am the one that lives inside this body. You do not. Now, how are you going to help me feel well?"
I love this! I cried and begged her for a referral to an endocrinologist but now that it’s all sunk in, I feel like I could speak to her like that very easily! 😬
Last night we watched the movie Richard Jewell, about the security guard who found the backpack with a bomb in it at the Atlanta Olympics in 1996. The FBI zeroed in on him as a suspect and one stupid agent leaked the suspicion to a reporter. The life of Richard and his mother turned into a nightmare. They became deluged by reporters. The FBI had him pegged as a "lone bomber" type, but also insisted he must have had an accomplice who phoned in the bomb threat from a pay phone, because it was proven he could not have made it from where the bomb was to the pay phone in one minute. (Duh!) Jewell had a lifelong respect for authority and especially for law enforcement. His attorney was becoming very annoyed with him because he was so deferential and kept "helping" the FBI as they collected "evidence" (his mother's Tupperware, his hunting rifles, even his mother's underwear!) Near the end after over a month of this nonsense, he and his attorney met with the FBI who began questioning him again in an accusatory manner. Finally, Jewell said, "Are you going to charge me or not? " He finally told off the agents, and his attorney was delighted. jimbovard.com/blog/2020/09/...
Thanks shaws. I’m going to see an endocrinologist who will hopefully do a full thyroid test 👍🏽 I was just wondering if there was anything else to be said about low ferritin and low haematocrit 🤔
We ALWAYS recommend getting FULL thyroid test BEFORE seeing any thyroid specialist endocrinologist
A) it’s waste of first appointment if don’t have test results with you
B) essential to test thyroid levels by testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
C) all four vitamins need testing and supplementing to bring to OPTIMAL levels
Always get same brand of levothyroxine at each prescription
Your current Low vitamin levels are almost certainly direct result of low stomach acid due to being under medicated
Medichecks is usually cheaper than Blue Horizon....but the “snap shot” cortisol test can be useful to see if you need to investigate cortisol issues further
Getting all four vitamins OPTIMAL frequently improves conversion of Ft4 to Ft3
Vitamin D at least around 80nmol and around 100nmol maybe better
Serum B12 at least over 500 (Blue Horizon test)
Active B12 over 70 (Medichecks test)
Folate at least half way through range
Ferritin at least half way through range
If you start taking vitamin B complex, remember to stop this a week before ALL BLOOD TESTS as biotin can falsely affect test results
Thank you. I’ll order them today. I think the cortisol would be helpful, just in case. I won’t take anything until I’ve done the blood tests 👍🏽 Feeling particularly awful today, I just want to feel better 😢
To reiterate, don't rely on the prepaid envelope. Take it to the post office and buy next day delivery. Post is all over the place now (I use it daily for posting customer orders). You need to know it will get there on time.
SlowDragon I think the tests are likely to arrive on Tuesday (I’ve literally just ordered them) so should I wait until the following Monday or Tuesday to do them? Why Monday or Tuesday?
This is why I say over-ride the post with your own Next Day Delivery service. You can then post back Monday - Thursday in theory, although I'd still say that right now you are safer posting next day Monday - Wednesday.
Your tsh is not fine if you are still experiencing symptoms I guess. I really would not wait for an Endo appt. Black Friday sale at Medichecks and probably other places now on. Get your tsh T3 and t4 tested - and other vits in the Well Woman test pack if you can afford it - then you can post results here and get good advice plus you'll be well prepared for your Endo appt.
Thanks JAmanda, I’m going to sort it out today. Would you recommend medichecks over anyone else? I quite like the idea of blue horizon because they test cortisol too?! I really have absolutely no idea about all of this though 🤷🏽♀️
I just like dashboard of Medichecks. So each time I go a new test it tracks it against earlier tests. It's personal choice. I did Blue Hotizon at first and liked it as it gave Rt3 - but many say that's useless measure. So who knows. I'm kind of stuck on Medichecks now.
Don’t mean to butt in but I did Blue Horizon and sent them back Thursday special delivery before 11am (they don’t do before 9am atm) I rang them before hand and they confirmed the labs work over the weekend. Had the results Monday. Doctors bloods a fortnight later and all pretty much same.
Friend also did BH last week. Sent them same. Thursday. Special delivery. They got the tests Friday 10.19am and she had her results by 4pm. Same day.
I did think, as she did about delaying but we aren’t blessed with patience and tried it. It worked.
Lastly I would add that from what I could make out the same sort of test on Medichecks was a blood draw whereas BH was finger prick.
Good luck with them. Whatever you decide. Hope you get a clearer picture of what’s going on x.
Heavy periods can cause low ferritin and heavy periods can be caused by being hypothyroid. When my ferritin was low my hair was falling out by the hundreds and I felt dreadful. I took Spatone and ate pate twice a week or you could eat liver which will also bring your ferritin up. Doctors don't seem to care as long as your levels are within guidelines and this goes for thyroid levels as well unfortunately.
Yep, my hair is now very thin and I feel absolutely awful. I came off Ferrous Fumarate 5wks ago (GP said 28 was fine...it had been 9....range 12-250) and have felt progressively worse again (two heavy periods haven’t helped!). My sleep is becoming hugely disrupted too. I would just love to feel like myself again! 😩 Thanks for your understanding and support, it means a lot x
Raising iron can be a very slow process in some people. It took me nearly two years. But regular testing is essential at least until you know how fast your ferritin and iron are going up, then you may be able to reduce the frequency of testing.
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