Every day I have the same symptoms. They typically come in waves randomly through day though the worst is always in the morning after eating breakfast and sometimes like today they've been persistent more frequently.
It starts with a sort of wirey thrumming (like somethings vibrating in my body) and some light thumping in my chest and sometimes an adrenaline tummy feel like when you're nervous. Then it progresses into more noticeable thrumming/thumping, I sometimes feel on edge and my heart rate increases it goes up in stages until about 92/96 then it goes down/back up randomly throughout. I then get sort of body jolts, a tight headache sensation, I feel very cold/have cold rushes, feel really tired and feel like I need to go to the loo. I sometimes then get weak arms and heartburn. If I try to move from laying down during this and walk about my chest feels like its on edge and I feel a bit lightheaded and get like jolts where I feel like im falling. This whole progression can either come on suddenly or build up over an hour and I can either have all or sometimes only some of the symptoms. This also sometimes happens at night though weirdly when it does then i usually feel warm.
i am undermedicated and iron deficient which I am working on so I'm assuming this is all adrenaline stuff? I know both are related to higher levels of adrenaline. It's horrible to experience but helps to know what it is!
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owl87
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I was undermedicated and anxious for years. What the body lacks in thyroid hormones it makes up for with adrenaline. It is not a good way to be.Just keep telling yourself that that is what it is and sit it out till you are better medicated.
The body's main stress hormones are cortisol and adrenaline. I suspect that your problems are more likely to be caused by cortisol being at the wrong level for you, rather than adrenaline.
If the body has too low a level of thyroid hormones it uses cortisol as a replacement if it can. It isn't a good replacement, but it is the best the body can do. Some people are good at producing cortisol, some aren't. Having high levels of cortisol doesn't make people feel well, and nor does having low levels. I think in the case of someone having low thyroid hormones AND low cortisol the body may use adrenaline to keep the body going, but I'm really not sure about that, so take it with a pinch of salt. Both low and high levels of cortisol cause will cause anxiety.
Being iron deficient causes heart rhythm problems, palpitations and tachycardia (fast heart rate). If the problem gets bad enough it will cause chest pain too.
If you post your iron and ferritin levels, what iron supplements you are taking, and what dose, I might be able to help you with that one.
For cortisol, the results of a saliva cortisol test would be helpful. It is also helpful if you have the result of an early morning blood test for cortisol.
Thank you that’s interesting. My ferritin at my last blood test was 17 range 15-250 and I take iron medicine in liquid form equal to 90mg elemental iron a day. I’m being sent for possible iron infusion due to my persistent low levels. What intrigues me is these problems are more severe now then they were when my ferritin and t3 levels were lower - my ferritin was previously 11 and my t3 was 4.8 for ages range 3.5-6.5 but at last blood test suddenly increased to 5.3.
How long have you been taking prescribed iron supplements? People can have an overly-optimistic idea of how quickly they will absorb iron. There is only a limited portion of the gut/intestine which can absorb iron, so if that portion of the gut gets damaged then iron absorption can be very limited.
Personal anecdote : It took me nearly two years to raise my ferritin from bottom of range up to mid-range. My serum iron throughout this time was initially below range and then eventually got into range but stayed low for years. Because of this I mostly pay attention to my ferritin because the chances of my serum iron becoming very high seems (in my case) to be low.
There are other people who have the opposite problem to me - they can raise serum iron but their ferritin hardly changes. Very high serum iron is not a good result to have, whatever the ferritin level is. (High ferritin with low serum iron isn't good either.) So, this is why I think people should monitor their iron intake with an iron panel every time they test. And for people who feel worse on iron then it might indicate a problem with serum iron - but until they test they won't know.
When I was raising my ferritin to optimal I was using ferrous fumarate 210mg, 1 tablet, three times a day. Each tablet gave me 69mg of iron, so I was taking 207mg per day in total. I could only cope with it with food, but at least my levels did rise.
I have been trying to raise my ferritin for nearly 2 years and no matter what I do it doesn’t seem to budge. I’d been taking the iron medicine on an empty stomach with vit c for over 2 months at my last blood test and my ferritin had moved up 2 points from 14. I can’t take any more because I already have severe digestive issues with my hypothyroidism - I practically had gastroparesis before diagnosis - and the amount I take now is already causing me issues. Interestingly I felt better for the first weeks taking the iron so I had thought my t3 had gone up which it strangely has but now I feel like this. I’m having an iron panel done before they’ll do the infusion so I’ll be interested to see my serum iron then.
I also just checked I had a serum iron test done in June before supplements when my ferritin was 17 and the result was also 17 though I don’t have a range so not much use!
Owl 87, are you being treated for your iron deficiency on the NHS? And are you a woman who hasn’t yet hit the menopause, too?I have been anaemic on / off for 7 years and have found the NHS totally unwilling to contemplate the iron infusion - despite my ferritin levels being under 10 for the whole of the last year and my also have gastro problems.
Am curious to know how you got towards getting an iron infusion, please - was it via your GP or a referral to a haematologist?
I have just had an iron infusion and feel better for it but I have never had to fight so hard to have something which all the tests indicated I should have - and I have private health insurance.
I am being treated on the nhs but the recommendation for iron infusion comes from my endocrinologist who told me to try private as my doctors are useless. I was trying to avoid an infusion especially because of the cost but I’ve been ill so long I’m desperate and I don’t see another option. I’m only 24 so still menstruating though my periods are 28 days and not too heavy.
It’s a very, very good plan and don’t worry about the expense. Although do ask any older relations if they can help you fund part of it as their Christmas present to you.
Iron infusions are in theory available on the NHS but not obviously in practice and it’s incredibly sexist that the NHS doesn’t make them more readily available given that women need them more often. I lost over 1.6 litres when my first baby was born. If I could turn back time, I would have paid for an iron / blood infusion then, because my health never recovered after it.
I should have done the same at your age, too, but didn’t know they existed.
Have you had all the possible reasons for your iron deficiency ruled out? A 28 day period can still be a heavy one.
And did the doctors discuss prescribing Tranexamic Acid, to reduce your blood loss? I’ve just been prescribed it and figure it can’t hurt to try.
Thank you so much for the info! I’ve never heard of tranexamic acid! I might have to enquire about that. I had missing periods for a while and when they came back they were quite heavy, lasted 7 days and we’re about 25 days apart but seem to be lightening now they’re settling in. My last one was around 2 days heavy 2 days light one day dregs but I always find it difficult to gauge what’s heavy or not!
It’s a strange question to ask. “Do you have heavy periods?” We only know what our own body is like - so can’t reliably compare our own monthly period to someone else’s. Doctors might also think about recommending you a Mirena coil.
The key thing is that you get this infusion, and have regular blood tests to see how your iron levels remain.
Have you tried a gluten free diet before? Am sure someone else here will have touched on that.
Yes it’s definitely difficult to quantify! I am strictly gluten free but I do think my iron deficiency could be gut related as I have terrible digestive symptoms. One interesting thing though is my ferritin has been low since it was first tested at 17 years old when it was 14. I had severe iron deficiency anemia when I was 20 and my ferritin was 3! It suddenly shot up for the first time in my life when I started t3 but then it decreased again alongside my t3 levels
Hello Owl, may I ask a favour please? If you find a way to increase your ferritin please will you let me know because I am just the same as you, usually ferritin 17 and after being on prescribed ferrous fumarate for 2 years my GP stopped prescribing because there was barely any change.
My ferritin has skipped between 3,6,4,5 - and now is up to 9 - last / this year.I have some stomach inflammation (raised calprotectin levels) which may be the cause of my higher ferritin result.
I can’t tolerate iron supplements at all so eat more red meat. And take a Vit C dispersible tablet in water or OJ with whatever meat I eat.
Have either of you tried liquid iron - Sytron? Children are usually prescribed it as softer on the stomach, but a GP can prescribe it to children.
And have you tried any of the liquid / herbal supplements like Spatone or the one that tastes like sugary nettles? Comes from Holland and Barrett.
And - Owl 87 - what are your digestive symptoms? I am having some and don’t know if caused by low ferritin or cause of low ferritin or connected to (usual story with thyroid) low stomach acid. Or something else!
The ferrous fumurate I take is liquid form and I've previously tried sublongual, spatone and gentle iron. I have also eaten liver and it was really helping until my periods came back after years without and now it doesn't seem to do anything. My digestive issues are severe silent reflux, constipation, bloating and burping and fulness easily. I assume its low stomach acid and thyroid related because the worse my thyroid levels the worse my symptoms - before diagnosis when my thyroid levels were under range I practically had gastorparesis and couldn't eat.
Those are my exact same gastro symptoms. I’m having an endoscopy today to look at them. Have you had any internal investigations and, say, the CA125 and H Pylori blood test and stool tests?
I’m sorry you have the same thing it’s really awful I long for the day I can eat normally again. Good luck for your endoscopy! If you find anything would you let me know? It would be interesting as we have the exact same symptoms. I was actually going to have an endoscopy shortly before diagnosis but they couldn’t do it because the sedative didn’t kick in - then kicked in when I was in recovery - because I didn’t know I was severely hypo yet which apparently affects sedatives!I’ve not had any internal investigations or h pylori test and I don’t think I’ve had ca125 either.
CA125 is for ovarian cancer. Highly unlikely either of us has it but the symptoms are so diffuse and non-specific it’s worth checking for - caveat: I’m not a doctor.
H Pylori, calprotectin and FIT test - all types of stool test that I had this summer.
You can ask your GP for all of these. Suggest you read and go armed with the NICE guidelines on stomach symptoms and 2 week referrals etc. They probably won’t want to do the 2 week referral, but might opt for this.
It’s important to rule sinister things out. And gastro tests take bl**dy ages.
My (second) endoscopy showed nothing. So I’m now having a CT scan next week, to look at the small intestine.
Might have been a good idea if they’d given me the 48 hour acid test (stomach ulcers) and pancreas blood tests (amylas etc) first, to provide more clues before sending me for an endoscopy. I didn’t tell them that but I thought it and when I asked what they were ruling out / ruling in, I didn’t get an answer.
I am very lucky because I have private health insurance and therefore don’t have to wait 6 months- forever for a test. In the NHS - where money is much more tight - you’d hope those other tests were done first, to give a baseline.
Sorry to hear it was inconclusive though glad it’s nothing serious and it would lead more credence to the low stomach acid idea! Really would have helped you more if they’d done the ph test during though!
Through the excellent help of an admin here I’m wondering now if some of my symptoms could be those of pernicious anaemia. It maps: hypothyroid, iron deficiency anaemic, gastric stuff, chest pains and palpitations, pins and needles etc, brain fog etc etc. I think you had some PA investigations - I spotted your name when trying to look at the PA page. Did treatment for that resolve any of your other symptoms?
I did! I initially thought I had PA before I thought hyppthyroidism and manadged to convince my doctors to trial injections with me. They definitley helped especially with the gastro symptoms but didn't resolve my problems. I think they helped because my gastro stuff was so severe I had low b12 levels and therefore accompanying symptoms a lot of which overlap with hypothyroidism. I had both intrinsic factor antibodies and pa cell antibodies done and both came back negative, although worth mentioning my endo thinks I have hashis but I don't have either anitbodies.
Are you on any thyroid hormone yourself? When I first started levo it did nothing for me as I was too ill and my gastro stuff got even worse so I was given t3 too. On starting on 10mcg I experienced a surge in ferritin up to the 80s - higher than its ever been and shortly after this I experienced pretty much normal digestion. After that I wasn't monitored properly and my ft3 and ferritin levels fell and they've been lower ever since with me stuck on a lower dose of t3 because of the palps etc. I am considering trying to do an increase in t3 to see if my ferritin will go up again by itself now I've been on the iron medicine for a while as I have seen a recent increase in my ft3 and I think just the one increase might take me back to optimal. Someone posted a link to a study a while back on hypothyroid patients who were given 70mcg of t3 for a week and all showed an increase in ferritin after just one week with on person showing a 243% increase!
Am wondering whether I have secondary hypothyroidism, too. I am thin enough as it is and don’t want to take any more levo, so it has to be T3.
Given the B12 injections helped your gastric symptoms, and you have gastric symptoms now, why did they (specialists) not continue with them?
You can have reasonable B12 levels and still have PA, of course. Mine are on the low side as is folate but I understand they have to look at the symptoms.
Do the docs only look at the other levels you mention when assessing your need for the B12 injections after you have had one or two?
We sound very similar! I was extremely underweight at diagnosis - I lost a 1/3 of my body weight and I've always been thin anyway. T3 didn't make me lose any weight and actually allowed me to put it on as I recovered. I was diagnosed secondary as I had under range t3 and t4 but normal tsh. However my endo also thinks I might also have hashis as I have strong family history of underactive thyroid (all women on my dads side) and my sister has the exact same presentation! I think you could definiteley benefit from trying t3. Have you ever had ft3 tested? Mine wasn't even 10% through the range with t4 at the top on levo alone and then t3 took it up to 71% and thats when my ferritin also shot up.
They stopped when I was diagnosed because it was assumed it was hyppthyroid related instead which I think is both right and wrong - b12 deficiency causes low stomach acid which of course worsens issues but I think the initial low b12 was a result of hypothyroidism induced low stomach acid as like I mentioned, when I started t3 it took my levels up and my digestion was almost normal again. I also now take a methylcolbamin sublingual instead to try to keep my levels up. The doctor did a intrinsic factor test before giving me injections but still agreed after the negative result on the basis according to nice guidelines I should be offered them as my level was under 200 and I had a lot of the symptoms. I did the other privately later and the fact they are both negative would make it unlikely I had PA.
Am I right in remembering - having a brain foggy day today - that you can’t tolerate iron supplements either?
I’m wondering what it is - given my abdo scan was clear as was my endoscope - that is causing me to have these continuing gastro symptoms after (in my case) taking ferritin supplements.
My trajectory has been:
Blood test shows iron deficiency
Takes loads of iron supplements
Has tons of gastro symptoms: burping, stomach pains etc etc
Stops taking iron
Gastro gets a bit better
Investigations - colonoscopy and endoscopy - are inconclusive
Investigations stop
Has worrying ECG that means I am admitted to hospital - no clear diagnosis made by hospital either and then discharged without follow-up arranged
Continues to be iron deficient
Asks for iron infusion - ignored
Takes new type of OTC iron supplement a few months later.
Gets diarrhea and loses several kilos, has significant breast changes (tests all show no cancer), gastro changes (just the same as first time took iron and got ill, except this time with major stomach pains that no-one can explain and that don’t go away )
H Pylori test is positive
Slightly raised calprotectin
Still iron deficient - 9 / 10 months after first diagnosed with it
Keep asking for iron infusion
Takes antibiotics x 2 + omeprazole
Feels worse after taking them
Get iron infusion, finally
Abdomen ultrasound - result is clear
Endoscopy - result is clear ie. no ulcers
Have now had burping and stomach pains and other gastric signs for 3 months, this time around
I can tolerate iron just about - I'm taking 90mg of liquid elemntal iron with vit c and can tolerate the digestive issues but I had them anyway so difficult differentiating what is hypo/iron caused! I am having an iron panel which I am very interested in as my ferritin hasn't budged but I have had a sudden improvement in t3 levels since being on the iron and I've noticed improvements in my energy and the lightness of my periods. Im therefore wondering if my serum iron has improved and is therefore aiding my conversion but my ferritin is low and simply won't go up until im on the right t3 dose like before.If you can I would definitely recommend getting a ft3 test done and if its low trying some t3. everyone is different but as an example a ft3 of 5.6 (3.5-6.5 is my range) gave me a ferritin of 89 with no supplements and at the time a pretty poor diet and an ft3 of 5.4 currently is giving me a ferritin of 17 still. Percentage wise the first is 70% through the range the second 63% so you can see how even a tiny diffence can be a fairly big difference in the range and clearly in bodily function!
Yes it really was and I discovered it accidentally several years ago on a website that was talking about sole water. Literally in less than 30min my tachycardia stopped and I felt my body calmer. I didnt know much about the adrenals then. I couldn't believe it, so I repeated it several times and everytime it worked. I think back then I was doing half a teaspoon but now due to gastritis caused by antibiotics, I just stick to 1/4. Always drink it after food mind you, to protect the stomach.
I'm keen to try it with orange or lemon juice since the adrenals need a high amount of vitamin c. God willingly when my tummy improves
It was just regular pink himalayan salt and no additional iodine. It truly is a blessing.
Thank-you Owl, that's very kind. Presumably you're not vegan? My doctors have the attitude of: "oh well you choose to be vegan, that's the problem. We don't know what to suggest and don't need to do anything because it's your choice". Do dietary sources like liver and black pudding not help you?
No I’m not vegan and I’m sorry to hear your doctors reacted that way it’s so dismissive. I had a haematologist tell me once to eat read meat every day to raise my iron which I was very reluctant to do! I have previously tried eating 200g liver a week and it was working for a while - my ferritin was going up 10 points a month a - but I wasn’t menstruating at the time and when my ferritin got to 43 I then got my periods back and my ferritin dropped instantly to 23 then fell to 17 then 12 and has been around there ever since. I did have quite heavy periods for a time though so wonder if that had an impact and whether the liver might help a bit more now my periods are lighter but ironically it’s been out of stock at my supermarket for weeks now!
Ah, so it sounds as if those periods are a big factor in your low ferritin. My daughter had this exact same problem and has been fitted with a coil, the m----- something one, I think in someone else's post they give it it's proper name, and she is now much, much better, seems well and happy. Have you been offered one? (My daughter wasn't she asked for it)
Thats intersting to know, thank you. I was offered the pill by doctors but wasn't keen as I already seem to have a big sensitivity to sex hormone changes and I've only recently got my periods back so didn't want to risk messing them up again
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flu-like symptoms
Does this sound like Lyme?
Too much NDT at night?
Anyone recognise these symptoms?
