I am wondering what these original labs mean. In 2004 I felt like I was completely losing my mind after having gone through a time where I was very hyper...could hardly eat or sleep...super hypervigilant.
I was diagnosed with postpartum thyroiditis and put on Levothyroixine. Since then it's been 19 years of struggles. I just saw that I had low ferritin then but it was subclinical so docs didn't care. What does a lifetime of low ferritin do to you?
Also, is this Hashimotos?
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deniseross
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Hi, i am following this post as I am in the position you were in initially. I gave birth 7 months ago, was diagnosed as hypo and am now taking levo. I have chest pains and doctors keep readjusting my vitamins. I found out my ferritin is borderline low but iron count is all ok. Doctors are ignoring it and i dont know what to do...
Please increase your ferritin level. What are you taking for it?
Is your thyroid condition auto-immune (yet)?
I blame my low iron pre, during and (even more obviously) post- pregnancy for my eventual Hashi’s. I have met two other women who feel the same about their blood loss in childbirth leading to auto immune thyroiditis within a year, and am sure we are not the only ones.
How do I increase my ferritin as my iron count is all normal within range. The doctors just prescribed me levo, vitamin D, vitamin B12 and Nevibolol for my high pulse.
I am trying to increase ferritin but it's very slow. But thank you for your experience. So much is becoming clearer now.
I guess I have had Hashimotos all this time and never really known, now that I am seeing these old labs and finally getting some interpretation. Doctors all just were happy with the term 'hypothyroidism' but not with anything more specific than that.
I am starting to realize that I may have had chronic lifelong anemia. It was diagnosed a few times as a child and young adult because the basic iron test showed anemia, it was that severe. But I don't know that anyone was ever testing ferritin, so probably I was just taking iron long enough to raise the numbers to acceptable clinical levels but not really optimal ones. I'm just reeling at the ramifications of what this means for why my health has been the so tenuous for so long. Just something as simple as iron deficiency untreated?! It's a lot to consider. I guess I should be thankful maybe there's a chance for improvement.
No, not very heavy, at least as far as I am know. I am in late perimenopause/early menopause and taking cyclical hormones so only have a period every two months now and it's very predictable and moderate. However, I feel absolutely *terrible* for two weeks after each period, leading me to believe that this is iron related. I think I need to triply my iron intake.
Suggest you do not overdo your intake. You can’t triple your iron intake (in supplements) without expecting some side effects. My side effects from raised supplementary iron intake are now permanent and will be a problem for me for life.
Build back up gradually, is my advice. Take the dose doctors recommend you have and go from there.
My doctor / CCG has reduced the acceptable ferritin level threshold to 13, but everyone here will tell you that 50 is an Ok minimum, not 13 or 15.
It was 13 for many years. Having a level that low is torture, in my opinion. I was pleased when NICE brought out new info that said it should be 30. I'm appalled that your ICB has declared that 13 is acceptable. And of course low iron is largely a female problem so that fits with all the other crap we put up with from the medical profession.
[CCGs have been replaced with ICBs now - Integrated Care Boards]
The Clinical Knowledge Summary from NICE on iron deficiency anaemia :
Note that people can be iron deficient with or without anaemia. And it needs to be treated whether anaemic or not. Unfortunately many doctors don't appear to agree with that sentence because they don't care about quality of life.
Please note that severe iron deficiency can cause fast heart rate (tachycardia) and chest pain. If it is really severe it can even cause heart failure.
i was at 6 & local gp refused to do anything. caused all kinds of problems, destroyed my health, its taken 7 years & 18 months on t3 to start to feel a bit better. ive spent an absolute fortune to get this far, i dont convert so its trickier. dont let them ignore low iron etc. usa govt says at 6 patient needs hospitalisation!
I had to fix my own low iron and ferritin in the end - relying on doctors was a waste of time because they believed very low levels were fine. It took nearly two years to raise my ferritin to mid-range. But my serum iron didn't go up for a long time. I maintained my ferritin as close to mid-range as I could, but it took 5 more years of a maintenance dose of iron before my serum iron started to rise. If I raised my iron dose in an attempt to raise my serum iron, my ferritin would start to go sky-high and my serum iron would hardly budge, so I just worked on maintaining for years.
So, it took me 7 years to reach a level that would almost maintain itself (I'm long past menopause). Doctors believe that women past menopause are unlikely to be short of iron because they no longer have periods, so they rarely test anything iron-related for women like me. But someone who has gone into menopause while iron deficient could stay that way for years without help.
The things I needed to find out before I could fix my own iron problem were :
1) Iron supplements that doctors prescribe can be bought in UK pharmacies without prescription, you just need a pharmacist's permission.
2) Dosing info can be found in the BNF (British National Formulary) which is freely available on the NICE website.
3) Testing can be carried out privately with finger-prick tests without involving doctors. These tests can be bought online.
4) I found out optimal levels for iron, ferritin and other iron-related tests.
Once I could treat my own iron it was a huge relief that I didn't have to beg and plead for help any more.
Incidentally - I just noticed - this thread is four months old now.
I hope this somehow helps you address this now and attain a higher quality of life as a postpartum mama than I had. It’s of benefit to your children and all of your other family as you are (most likely, as with most moms) the hub.
I have started taking vitamin b12 and this has releived my chest pain so I am hoping it is helping my ferritin levels. Its only been 2 weeks and doctor told me to go back for my tests in 3 months. From what I understand with these thyroid issues the key is to keep all vitamins and thyroid hormones at optimal level (not just within range), keep an ideal weight and regular excersize and if a new symptom comes up go to the doctor for blood tests as its long term effects can cause heart, muscle and gut issues. Oh and for early diagnosis and monitoring it is best to have an ultrasound once a year.
I have never once ever had a doctor even remotely suggest an ultrasound for my thyroid gland. Are you in the UK and do they do that there? I have a feeling that if I asked my doctor they would look at me like I was an alien. They should just change the name 'doctor' to "gaslighter' as far as I am concerned.
Hi deniseross NHS don't use ultrasound of thyroid as routine part of diagnosis/ or treatment monitoring, for autoimmune hypothyroidism .
i've been diagnosed more than 20 yrs (autoimmune hypo, started after pregnancy) and never been offered one. and i don't suppose i'd get very far if i asked .
They aren't interested in ultrasound imaging unless there is eg a lump that could be a cancerous nodule , or some other structural symptom , eg. difficulty swallowing that might be due to thyroid eg. retrosternal goitre .
i don't think they even order ultrasound routinely for a visible goitre , unless it's causing any actual problems. not sure about that though , as i never had a goitre
you can get them done privately in few places round the country for about £150 ish .. i'd like one done just to satisfy my curiosity about how much/ if any thyroid i have left after 20 yrs , but too expensive to justify.
I live in North Cyprus where I have to use private doctors. They recommend a yearly ultrasound to make sure there are no cancerous nodules that have developed. It is up to you to get it done or not. I guess maybe it's not necessary just a precaution for early diagnosis.
just had mine done. i only have a tiny hard lump left (mine was gone 15 yrs ago). it has to be monitored. my daughter had thyroid cancer age 20 - big shock. she stayed in germany after we left & has a v good crew there.
The Antithyroid Peroxide Antiobody result of 125 is marked high, even though there is no reference range it does confirm autoimmune thyroid disease, known to patients as Hashimoto's.
The ferritin result of 29 (15-292) was very low in range and would have possibly suggested iron deficiency and your doctor should have done a full iron panel at the time to confirm this, also a full blood count to see if you had anaemia (you can have iron deficiency with or without anaemia). Of course this ferritin result isn't appropriate now but it would be a good idea to check this now with a full iron panel if not already done.
Recent labs are below. Ferritin was 10 in 2021. I guess I really need to try to take larger doses of iron than I'm on. I am so sad that this may have been going on for so long...how many people are out there untreated for something so simple yet so important?
Looking at your most recent iron panel below, your serum iron and saturation don't show iron deficiency but your ferritin is still low. I would discuss with your doctor how to address this but besides iron tablets you could include iron rich foods in your diet such as liver, liver pate, etc
Thank you for helping me decipher that. I thought that was how the iron panel seemed but as we all know, sometimes the range that the labs say is normal is not. I wish I could eat liver but just can't. I'll read the articles and then try to up my iron intake with various methods.
This is also the first time I realized that a rheumatologist tested the antibodies and ferritin and they had some relevance. He didn't address them at all at the time and I didn't know enough to know what they meant. All I can say is that I was in crisis at the time this test was taken with terrible arthritis, insomnia, pulsatile tinnitus, anxiety, etc... so I ended up on antidepressants...
You’ve done us all a service by posting this question.
I would love to know the answer to the question you raise : what does a lifetime of low ferritin do to you?
This applies to such a huge proportion of women. I could equally say people, but the people it applies to most often are women.
Do thyroid charities embrace women’s health advocacy as a big part of what they do? If they do, are they funding and lobbying for research into iron and thyroid?
The top rated private haematologist I have seen for my unfixable (without infusions) anaemia and iron deficiency told me without a pause that iron levels and thyroid levels are not linked. He can say that without a pause because, at the end of a long career, he’s simply not aware that they are.
I have only recently started on this journey as was diagnosed with Hashimatos about 4 months ago. From what I can tell iron levels and thyroid levels are not direnctly linked but are indirectly linked. The thyroid issues effect your vitamin b12 and D levels which in turn effect your boddy's ability to turn iron into reffitin thus lowering ferritin level. OR the thyroid issues cause gut issues which also effect the ability to absorb the iron which also results in low ferritin. I might be wrong as I have only started on this journey recently but I am reading a lot on it. This forum has helped me greatly in this regard.
Links - direct or indirect - are links. Links that none of the doctors I have had to speak to in the last few years - cardiologists, haematologists, GPs, nurses, nurse practitioners, endocrinologist, gastroenterologists, dermatologist, gynaecologist or breast cancer surgeon - are aware of.
Difficult when you are chronically low on iron and advocating for your own health when none of the doctors you get to see are aware of what is already out there in a lot of academic research.
I am not sure whether the scientific research positively confirms there is no direct link between lack of iron and the onset of hypothyroidism or whether academics have not investigated this link and proved a causal relationship result (Y/N) YET.
I have met enough women whose hypothyroidism was immediately preceded by iron deficiency and anaemia (precipitated by heavy blood loss in child birth) to know that there is a correlation for many women, myself included.
The theory can’t be tested in men, sure. But has it been tested in women?
I guess there is a lot of room for progress to me made, isn't there? It doesn't seem like it should be so hard, does it? Considering how many people have these issues and how much they affect quality of life...
It would be easy to understand why these topics are so poorly understood and rarely investigated if the thyroid conditions in question were very rare illnesses. Instead of which, they are incredibly common - in women - and still the body of evidence and the evidence of curiosity is paltry.
Women feeling pretty rubbish most of the time seems to be an OK way for us to live our lives. When you think how many of us - apart from doing jobs that benefit society - care for children or our elders and volunteer for those who need help most - you have to wonder why this is so.
In the U.K., if you want decent and non-judgmental thyroid care (hypothyroid, anyway) you have to pay for it, because the NHS system is too much of a lottery. If you hit the jackpot in the NHS one year the next year they’ll say they were wrong and your symptoms, health and life don’t really matter after all, just your numbers do.
It would be nice to believe this is just a temporary situation!
Well put...it's a bit of which came first the chicken or the egg? you have laid out some of the links/connections that I am forming based on all of the research I have come across. Another factor is the food issues such as gluten/celiac and dairy. I know that lots of hypothyroid/Hashimoto's advice is to avoid gluten and dairy and I've had a difficult time seeing the connection but and/or order of how the issues evolve.
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