Is there anyone who could read these results for my teenage daughter ? She's 15 (just).
Very heavy periods since 11 years old, suffered for years until they started lasting 3 months non stop. Now on the pill which helps to regulate them (but I'm not overjoyed at) Lately she has started having severe pain with them, fainting when exercising (heart rate goes over 200 BPM) and is EXHAUSTED, constantly. She has a lot of symptoms that point to Hypothyroidism, but has low ferritin (but we supplement with B12 and iron and D3 ) which have similar symptoms I believe. She has a puffy face - sometimes looks bruised , sometimes it's not so puffy. She has rough dry arms - really rough!
A curve ball came when I heard that her Grandmother on my husband's side had severe endometriosis. Similar symptoms to my daughter. My mother is Hypothyroid.
Also the cortisol levels! She is quite 'tightly wound' sometimes ...she knows it too..."Is that why I get so stressed Mum?"
I'd love some advice if anyone has any.
A UK based specialist anyone could recommend would be welcomed too. She's suffering and I keep taking her to the GP and they don't really comment on anything. Just give her the pill and now new pain meds for her period.
Many thanks! XX
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Mummyscamp
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With cortisol that high I think you should see a GP, show them the results and ask for a referral to an endocrinologist with an interest in and knowledge of Cushing's Syndrome or Cushing's Disease. (I can never remember the difference between the two, so don't know which might apply - if either.)
The first thing the GP is likely to do is to do a blood Cortisol test to see if the high result is duplicated. It is essential that the blood test is done first thing in the morning, say around 8am - 9am. Cortisol levels have a circadian rhythm and the test is supposed to measure cortisol at its highest.
If it shows up high enough for the doctor to pay attention to then they should refer to endocrinology.
Endocrinologists don't know everything there is to know about everything related to endocrinology. Many endocrinologists are diabetes specialists. Obviously you want your daughter to be seen by someone who knows something about Cushing's. The best way to find out what you can in advance is to investigate your local hospital endocrinology website, look up the doctors, see what you can find out from there, and also look for any of their research interests. To do that, put their names into a couple of research websites and see what kind of papers they are writing (if any) :
If you find anyone promising ask your doctor to refer you to that specialist specifically, and make sure that the person you want to see is actually the person who will see your daughter. Being seen by someone junior, with no experience in anything much is common, although sometimes you really have no choice on the day.
For future reference, if you do get referred to endocrinology then it is a good idea to know something about the kinds of tests they do, the preparation required, how the test is performed, and how results are interpreted. This link to the "Endocrine Bible" is well worth knowing about :
Personally I prefer the PDF version because it can be downloaded, but it is your choice, and you could use whichever is most appropriate for you.
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Having said all the above, there is still a chance that other things going on with your daughter's life and health are the cause of her problems that are raising her cortisol.
Her ferritin is abysmal. I'm baffled as to why there is no reference range for that. I would complain to Medichecks (assuming it is them who did the testing) about that. I can't remember if the B12 is serum B12 or Active B12. And it doesn't have a reference range either, which is shocking. A folate test would be helpful.
I don't know how successful you'll be, but you could ask your doctor to test your daughter's B12, folate, and an iron panel.
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Be aware that doctors often try to frame almost every health issue in females as a mental health issue. We are often told we are depressed, anxious, stressed. Be extremely wary of doctors who want to dismiss all your daughter's problems and put her on anti-depressants. Insist on her being investigated and treated properly.
Personal anecdote : I was anxious and depressed for much of my life. I unexpectedly fixed it myself in my 50s by treating my own low iron and ferritin (iron stores). Once I'd got my ferritin up to mid-range I started taking enough iron to maintain my ferritin level but not raise it. Hey presto - no more anxiety at all, and depression was much reduced. I was expecting to have more energy, but I hadn't expected the disappearance of my anxiety. All those anti-depressants I was prescribed over the decades (which never worked) were a complete waste of time. They are also addictive and extremely difficult to come off of, and they have a huge number of very unpleasant side-effects.
I should have added that all this has nothing to do with the possibility of her having endometriosis. She could have Cushings in some form AND Endometriosis. She'll have to see a gynaecologist for that. I don't know how it is diagnosed these days. I do know it is still difficult to get a diagnosis - there appears to have been little or no progress in diagnosis and treatment of it since I was diagnosed with it in the early 1990s.
Thanks for your anecdote. My daughters ferritin is dreadful too and she’s dreadfully anxious/depressed. Gp told her her ferritin was fine when it rose to 22 from 9! So she’s reluctant to carry on with iron tabs at my urging. I’m going to send her your story in hopes she takes tabs. ❤️
If you can get a doctor to do an iron panel you could post the results and reference ranges in a new post on here and ask for feedback. And the results of B12 and folate if you can get them.
If you can't get an iron panel done via a GP and you can afford to get it done with a finger-prick test then this is the best one I know of :
Bear in mind that doctors think anything in range is absolutely fine, but I don't know anyone with chronic illness who feels well with a low in range ferritin.
If your daughter is worried about her weight she should know that low iron might be partly responsible - although Cushing's puts weight on as well, which may or may not be relevant :
Thanks for your reply - have you Cushings and Endometriosis ? She has soooo much pain with her periods - one night she was sobbing in the middle of the night - I went to see what was wrong and she was shaking and you couldn't touch her because the pain was THAT bad. They have no prescribed a painkiller too as well as the pill.
I don't have Cushings, as far as I know - I've never sought a diagnosis. But I did get a few saliva cortisol tests done several years ago and my results showed above range results for three out of the four samples and the result that was in range was at the top of the range, so I did a lot of reading about cortisol at the time.
Cortisol is one of the stress hormones and it rises when someone is under stress. Bear in mind that stress can be physiological (e.g. patient is anaemic), psychological (e.g. patient is being overworked and bullied at work), or physical (patient has a bone sticking out of their leg), but the bad news is that doctors will spend time on the broken leg, are rarely interested in discovering anaemia or any other invisible physiological problem and often won't even look for it, and their first instinct in getting an explanation for patients' problems - particularly female ones - is to assume everything is psychological if they can't see anything physically wrong.
[Adrenaline is a stress hormone too but I don't know anything about adrenaline levels - I've never come across someone who has had their adrenaline levels measured.]
Anything which makes the body work less well than it should or could will cause stress. This is why I am absolutely convinced that anything about our body's function that can be optimised should be optimised. But doctors think that optimal is within range. So, for example, a common reference range for ferritin is 13 - 150 mcg/L. But there is a world of difference in how someone feels with a level of 20 and a level of 145. In fact an optimal level for ferritin with that reference range is often quoted as 90 - 110 mcg/L.
I am not saying that optimising this, that and the other will cure people. I'm just saying that having condition X may well make people feel awful, but having condition X + low iron + low vitamin B12 will make people feel a lot worse.
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As for Endometriosis, I have a dreadful history with that. It took me 19 years to get a diagnosis, but that diagnosis came from a private IVF Clinic, so the NHS ignored it and disbelieved it. I had issues with recurring ovarian cysts - both functional and endometriomas, often huge. I had adenomyosis (endometriosis affecting the walls of muscle making up the uterus). I had fibroids. I had a hysterectomy in my mid 30s, but still continued to be in pain. I got my first prescription for pain relief that actually helped when I was 55. In the meantime, I now have a warning flag on my records that I'm a drug seeker because I pleaded for pain relief so often.
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Note that having very heavy periods is likely to cause low iron and/or ferritin. Having low iron/ferritin is likely to cause periods to become heavier, and will cause them to be more painful. It sounds weird that being anaemic can cause more pain and heavier periods but lots of women have found this to be true.
Please note that "iron deficiency" and "iron deficiency anaemia" both need treating, but doctors often test for anaemia without actually testing for iron deficiency.
I would strongly suggest that you get hold of copies your daughter's medical records, from GPs and from hospitals - you have to deal with each surgery and each hospital separately, and keep them up to date. Keep multiple copies and do not lose them. You need to make sure that they are kept as accurately as possible and keep them up to date. When I got my own records I discovered that things that had happened to me were minimised constantly, and were often not recorded at all. In several cases the information was there if you knew what you were looking for but the people who coded and summarised my records were absolutely awful at the job. If something is missed out write a letter explaining what is wrong and ask for it to be kept with your records. It's very difficult though because doctors don't like people who "interfere", so I've found that it's like treading on eggshells. You don't want to end up with warning flags on records which will affect medical care for life because getting flags removed is practically impossible.
Hope its okay to tag you both on this post? You have given me excellent advice personally in the past and hoped you could help my sister here as she has been struggling to get to the bottom of her daughters health issues for years...
To me it looks like she is anaemic and has other deficiencies that need sorting. She also looks to by hypothyroid as her labs are far from optimal. Anyhow would really appreciate hearing what you think about these labs and her side effects etc. Thank you 🙏
I am not medically qualified and I think you are aware - but I am sorry you're worried about your daughter.
I do hope some of the members have sufficient knowledge about different autoimmune conditions.
Before supplementing with B12 I would have asked for a blood test to exclude pernicious anaemia or rheumatoid arthritis as both my sister and daughter have R.A. I have pernicious anaemia but I have monthly B12 injections . My mother also had P.A.
We automatically know when our child isn't well. It is disappointing that some doctors believe we *the mother' is causing their child to be unwell.
I don't know how many times I took my daughter to GP and when I said "could it be Rheumatoid arthritis." he was furious with me 'for putting ideas into her head" but never took a blood test.
She is now seriously injured by R.A. and can do nothing for herself.
i hope there is some good news for your daughter soon and that her symptoms can be resolved.
Firstly thank you so much for your responses - I have a lot of good reading to do!
She is vegetarian yes...we all are, myself for 33 years and now I'm vegan. We eat very well...I promise! However - whatever we are eating and the supplements she takes it's not working for her. She is becoming more and more exhausted and overwhelmed (tears this am "I don't know why Mum...I feel so stressed and tired"). What would hinder the absorption of the vitamins?
I have asked Blue Horizon about the ranges for B12 - they are sending us another test to re-the folate.
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Look at increasing iron rich foods in diet
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
Click on "Read the list of available tests" and on page 3 of the pdf you'll see
Urine Iodine Test:
Specimen requirements: Urine
Cost: £71.00
Order Code: END25
Turnaround time: 5 - 10 days
Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.
Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.
I would just point out that sublingual B12 absorbed through the mucus membranes is better absorbed than tablets that are swallowed and absorbed through the gut. This looks a good one but it is high dose at the serving size they suggest, that could of course be adjusted to suit:
Also, D3 tablets are the least absorbed form of D3, oil based softgels are better absorbed and there are some vegetarian/vegan brands of this on Amazon.
If lanolin isn't a problem (and I appreciate that it might be for some vegetarians) then this is a good D3 in an oil based liquid form and it contains K2 as mentioned below:
Magnesium is needed for the body to convert D3 into it's active form and because D3 aids absorption of calcium from food then we also need Vit K2-MK7 to direct the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems like kidney stones, calcification of arteries, etc.
Different forms of magnesium have different "jobs" so you need to choose the right form - see
Oh we used to use that Better You spray for Vit D - not at all sure why we stopped! Maybe I expected something miraculous - I suppose getting the regular tests is very important
Anyone with restrictive diet should be testing their vitamin levels
B12 is not available via entirely plant based diet
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
I'm afraid that iron product you've linked is unlikely to be very successful at raising ferritin. It has very little iron in it - only 20mg per pill.
There are lots of different iron products available and the thing you need to know is how much actual iron is in the product. People also vary in how well they absorb iron, and how well they tolerate iron supplements.
Another of my personal anecdotes...
I have been anaemic at various times throughout my life. Doctors would give me a prescription for 2 - 3 months iron supplements, and I rarely got a second. I'm not even sure whether they ever retested my iron before they stopped prescribing.
In my early 50s I had below range serum iron and very low in range ferritin. I felt awful. I got a prescription from my doctor for two months worth of iron. I found out (purely by accident) that prescription-strength iron supplements can be bought without a prescription. I decided not to waste my time again pleading for more iron. I've treated my own iron levels ever since.
I was initially prescribed ferrous fumarate 210mg, 1 tablet, 3 times a day. Each tablet had 69mg of pure iron in, making my intake 207mg per day. It took me 21 months (approx) to get my ferritin up to mid-range. My serum iron was still low.
I spent ages after that trying to find the dose of iron I needed to maintain my ferritin at mid-range, and was on it for seven years before I had to stop because for some reason my ferritin started to climb rapidly (probably caused by Anaemia of Chronic Disease). I still monitor my iron a couple of times a year even though I'm not taking iron any more.
If I had my time over again and knew what I know now I would experiment with lower doses of iron (but not as low as your daughters) to see what happened because it turns out that there are limits on how much iron the body can absorb at any one time. I would probably try ferrous gluconate (for sale in pharmacies in the UK). I think I might have given you this link about iron supplements available in the UK already :
Be aware that iron is poisonous in overdose and caution is essential to make sure that neither serum iron or ferritin rockets above range.
Be careful about dosing your daughter with prescription-only products bought abroad because the law views this as poisoning if not prescribed by a doctor. A woman who took her daughter to the Hertoghe Clinic in Belgium ended up in prison for months while waiting for trial on the charge of poisoning her daughter, even though Hertoghe and his staff are qualified doctors. She was acquitted but her daughter ended up being committed to a mental institution or a children's home (can't remember which) and she was stuck there for a couple of years.
Once someone is 18+ they can take anything they like that is legal and not prescription-only. But giving kids thyroid hormones without prescription, for example, would always be construed in law as poisoning.
Ferrous sulfate is not tolerated by many people. The better options are the gluconate or the fumarate. It's a good idea to take vitamin C with iron supplements because, allegedly, it helps the body to absorb iron.
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Her B12 is so low likely to need B12 injections regardless
But if GP says supplements only
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then if her serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
As mentioned in the first line of the commentary, reference ranges are not quoted by this laboratory for under 18s for some analytes simply because the numbers tested are insufficient to allow a reliable range to be given. That said, conventionally a ferritin level below 30 is generally considered to be on the low side, so Amelia’s iron stores are approaching borderline status. Whether that is sufficient to cause symptoms is debatable. Usually in a young person it is simply a balance of input vs output – if she is menstruating heavily, the level will decline over time, potentially. If she is supplementing it would be useful to know just how much elemental iron she is ingesting – standard over the counter supplements are generally pretty low dose and therefore may not lead to adequate replacement.
B12 is on the low side as stated, if there is any family history of pernicious anaemia (PA) that may be worth investigating further. B12 if taken orally is not well absorbed if PA is present of course.
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