I did a private blood test (medichecks advanced thyroid function) and my ferritin came back low 22 ug/L (range 30-150).
So obviously there's an issue there. Is it a take an over the counter supplement and eat black pudding and liver regularly type of thing or do I need to fight to see the GP? I was put on iron tablets years ago during my first pregnancy but I couldn't tolerate the tablets AT ALL. Luckily I was able to get the numbers up quite quickly with lots of black pudding and an over the counter supplement I could tolerate. But I don't know how low it was at the time. And my periods are a lot heavier now than they used to be (not so heavy they are concerning, just quite a lot heavier than they were before I had children).
The problem is that my surgery is terrible. My husband ended up in hospital last year because they wouldn't give him an appointment with a GP for 4 days with a suspected kidney infection... Trying to get an appointment for something less life threatening is pretty much impossible. And frankly, I don't have the energy to fight for it. Hence why I had the blood test done privately.
So... what to do? If the ferritin is low, do I need to have other iron tests? And how hard is that to convince a GP to do? I don't want to go through the drain of fighting to see the GP if they aren't going to do anything anyway.
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I cook liver once a week, local butcher does pork, lamb and chicken livers. Waitrose does lambs quite cheap. I chop small, discard any stringy bits, fry up with onion and herbs.
People will tell you to buy grass fed… I’m not aware of sheep farming that isn’t pasture based, maybe topped up with feed on poor ground or harsh conditions but I don’t dwell on that. More relevant for pigs maybe…they are in fields around here but not everywhere.
If some is left over I wizz it up and make pate (loads of recipes online).
Someone sent me a recipe for chicken livers with crispy onion and egg which is super delicious. A very nice lunch.
My thyroid levels are terrible. TSH 20.1 (range 0.27-4.2)
T4 13.6 (12-22)
T3 4.5 (3.1-6.8)
Problem is I don't tolerate levothyroxine tablets well. Anything over 50mcg and I get crippling insomnia, constant nausea, frequent diarrhea, rapid heart rate, migraines, just to name a few side effects. I have tried all the major brands, increasing dose extremely slowly, splitting dose. Nothing helps. I used to be under the care of an endocrinologist and he refused to trial T3. Since that time I have moved and now theoretically under the care of GP. Despite increasingly bad TSH levels I am told there's nothing to do but increase levo dose. They don't care about the side effects. I feel rubbish on 50mcg but simply can't function at all on a higher dose.
For the last two/three years I have been trying to get by best as I can by going gluten free, making sure to take levo well away from other supplements/food, and doing what I can with vitamins, etc.
My only strategy at the moment was to muddle along best I could until the levels got so bad they might consider trialling liquid levothyroxine or T3. And if they refuse then I guess I will have to figure out how I can manage going private or self sourcing...
I've never heard of propranolol. I'll definitely have to look into that.
I have tried splitting the levothyroxine dose in 2 but it didn't help in the slightest. I suppose I could try splitting it even further.
I'm currently taking Accord levothyroxine (50mcg). I have previously had teva, mercury and wockhardt. None seem to be any better. I desperately wish we could get Tirosint here in the UK. My mum (who lives in the USA) does really well on that one.
B12 was 84 pmol/L (range 25.1-165)
I don't know about vitamin D and folate because there was a sample error on my test. I'll have to have them retested but I need to do a proper blood draw because the finger prick tests just don't work for me (I bleed like a pig if I scratch myself on a thorn but first thing in the morning I couldn't fill the tiny little vial to save my life- I had to get a second kit sent out and I followed every tip/trick I could find on this forum and still only barely managed to get enough blood- but obviously it still didn't work because I got sample errors).
Both antibodies are sky high. Thyroglobulin antibodies 2362 (range 0-115). Thyroid Peroxidase antibodies 559.2 (range 0-34).
I've tried about a million B-complex vitamins but they make me sick to my stomach (to the point of throwing up in some cases). I was okay with the Better You B12 spray but I recently ran out and haven't ordered more.
Together K2 120mcg x1/day
Nano-cal calcium magnesium powder 667 mg x1-2/day. I've tried other magnesium supplements but this stuff is like magic voodoo powder for me. I'm prone to getting cramps in my legs and feet. If I feel a cramp coming on I have a glass of juice with this powder and the cramps disappear in minutes. If I forget to take it for a few days the cramps come back. If I take a different magnesium supplement, the cramps start up again.
I've long suspected weak adrenals (but not weak enough for the NHS to do anything about it). About 10 years ago they tested cortisol, dhea-sulphate and androstenedione (each came back in range- about 25% into the range in each case, if that's important). They also did the synacthen test. That came back as normal. Over the years I have done a few private cortisol saliva tests. Morning sample mid range. All other samples scrape along the bottom of the range or dip below it. DHEA always below or at the very bottom of range.
I'm in Fife, Scotland. I suspect I will end up going private because the GP practices in my area are absolutely dire. They don't even have a GP on staff at the moment (and haven't since we moved to the area almost 2 years ago). It's all handled (or not) by locum doctors. But I have had quite a few different GPs and endocrinologists in various areas over the years (both in England and Scotland) and they have all treated me pretty much the same- levothyroxine is the only option, I need to increase my dose and obviously I'm just being a baby about the side effects. I put up with it during my 2 pregnancies (and have never felt so ill in all my life). But after my daughter was born 2 1/2 years ago I had had enough. I reduced my dose to 50mcg (the highest dose I can take and still semi function) and have been muddling along ever since. I didn't feel great but I could (just about) care for my children and get through the days. My TSH stuck around 7-9 for a long time but recently I have been feeling worse and worse. So now I have to rally the energy to force the issue.
have you tried Igennus vitamin B complex. Full dose is 2 small tablets. Most people only need one tablet. You can cut them….start with 1/4 or 1/2 tablet
very unlikely that just 1000iu vitamin D is high enough dose
Thyroglobulin antibodies won’t reduce until TSH down around or under 1
TPO antibodies might reduce on strictly gluten free diet and dairy free diet
Dairy free is much easier these days. Loads of vegan milk free options available
Have you tried Aristo levothyroxine. Only currently have 100mcg tablets…..but you could cut in half to get 50mcg initially. Aristo is lactose free and mannitol free.
I'm so sorry you're going through this, it sounds horrendous. I wonder, is there an option for you to try liquid levothyroxine at all? Some people who cannot tolerate any of the tablet formulations do well on it.Also, if it would be an option for you to go private, I can highly recommend a consultant in Edinburgh who was extremely helpful for me. I can send you a private message with her details if you like?
Hello, I also have Low Ferritan problem and tried everything, can only eat so much liver and pate and black pudding. I've just ordered an Iron supplement from Three Arrows called Iron Repair, Simply Hema. Unfortunately I haven't got experience from it but its supposed to be very easily absorbed without all the side effects...
Hi, I've been using Three Arrows along with my daughter for the last few months and they are working well, with none of the downside of the dreaded ferrous fumarate 🤗 much easier to fit into the day as you can take them anytime 😅 I just avoid T3/T4 times
On the low Ferritin - I had an iron infusion (private, flew to London from Scotland) and they gave me a lot of info about it. One of the things the consultant said was if trying to raise Ferritin with tablets, take one ferrous fumarate every second day - side effects will be minimal if you do this, and absorption will be more effective. Take away from dairy and take with Vit C in some form (I used to have a clementine which also helped a bit with the queasiness of taking iron). FF is available OTC from your chemist and is not expensive. Downside it can take months whereas infusion is a couple of weeks. You won’t get infusion on the NHS in Scotland unless you’re also extremely anaemic (low haemoglobin).
Liquid iron contains quite a bit less iron than the tablets, and is also less well absorbed, so if your Ferritin is v low, it would take forever to raise it.
You don't have to see a doctor to get iron supplements. There are quite a lot to choose from. In the UK the higher dose supplements can be bought in pharmacies without prescription, and online too. And the supplements with lower levels of iron in can be easily bought online.
I wrote about the supplements available in the UK in this reply to another member.
People can have every combination of low/in range/high serum iron and low/in range/high ferritin. Different combinations tell you different things about your health.
One thing you could look into is haem iron supplements. The ones that doctors prescribe are non-haem iron salts. Absorption of haem iron is apparently much better tolerated by most people than non-haem iron salts.
I don't know anything about haem iron supplements. They used to only be available from the USA, had to be imported into the UK, and were extremely expensive. I think there are more options for haem iron supplements in the UK now than there were a few years ago.
Note : Haem is British English spelling. Heme is US English spelling. When searching for products it would be worth trying both spellings.
(Simply, I know they have some - so are easy for me to remember.)
Note that they also show a Ferritin product. That is, it is based on ferritin.
Our bodies absorb haem, ferritin and iron salts by three separate pathways which seem to be independent of each other. That is, even if you are already taking the maximum iron salts you can absorb, you still have the capacity to absorb haem and ferritin.
Thanks. That's very interesting. My mum lives in the USA so it wouldn't be impossible for me to get ahold of things from the USA even if they aren't easily available in the UK.
Thorne iron bisglycinate, 100mg taken every other day, raised my ferritin from 19 to the 50s over a few months. It's gentle with no side effects. I also have low iron because of heavier than normal cycles due to the hypothyroidism.
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