Hi there, I just joined the forum a couple weeks ago and have been avidly reading through, whilst waiting for my test results. About 5 years ago I was diagnosed with a neurological condition called Transverse Myelitis (which is similar to Multiple Sclerosis), but have felt generally unwell for about a decade before that. My condition has very specific symptoms, but I feel that it doesn’t account for everything that is wrong. I have always felt that I should be looking at improving my general health as a way of supporting my condition. But when I ask for further testing, Doctors tell me there is no point as I already have my diagnosis! I found a new GP recently and stressed the point that one autoimmune condition can often leads to others (MS etc are generally thought of as autoimmune). I asked her to check my thyroid, but of course they only did TSH, which she said was fine.
Fatigue is obviously a large symptom of any neurological condition, but I have been feeling off since my early 30’s (I’m now 46), along with high anxiety and low motivation. Other symptoms include a lot of weight gain, hair loss, dry skin, brain fog and blurry vision. About a year ago, I decided to get some private tests done, so that I could show them to my GP. I did the Thyroid Check Ultra from Medichecks, which showed raised antibodies, but predictably the doctor said it was nothing to worry about. Fast forward a year and I have decided to take control of my health, even if it means self sourcing medication. I did further tests recently and was hoping to get some advice on how best to proceed.
Last year:
TSH - 3.35 (0.27-4.20)
FT4 - 14.60 (12.00-22.00)
FT3 - 4.74 (3.10-6.80)
TPO - 109 (0-34)
TGA - 266 (0-115)
Active B12 - 49.90 (37.50-188)
Folate - 1.94 (3.89-26.80)
Ferritin - 51.8 (13-150)
Vit D - 45.3 (50-200)
Now:
TSH - 2.47 (0.27-4.20)
FT4 - 16.7 (12.00-22.00)
FT3 - 4.96 (3.10-6.80)
TPO - 48.7 (0-34)
TGA - 215 (0-115)
Active B12 - 92.2 (37.50-188)
Folate - 3.55 (3.89-26.80)
Iron - 12.5 (5.8-34.5)
TIBC - 53.3 (45-72)
UIBC - 40.8 (24.2-70.1)
Transferrin Saturation - 23.45 (20-50)
Ferritin - 51.7 (13-150)
Vit D - 65.2 (50-200)
Cortisol Saliva:
Waking - 6.16 (6-21)
12.00pm - 2.02 (1.5-7.6)
16.00pm - <1.5 (0-5.5)
Bed - <1.5 (0-2)
DHEA Sulphate - 2.92 (0.96-6.95) As part of blood test, not saliva
Bloods were taken at 8.30am before any food. I stopped all supplements one week before hand.
In the interim year I cleaned up my diet, gluten free etc and started supplements such as vitamin D, multivit and magnesium. But I struggled with the magnesium and bowel tolerance, so wasn’t as consistent as I should have been. The vitamin D was a prescription from my GP, which I just recently found out was D2 and not D3. I suspected the mutivit wasn’t really doing anything for me, so recently bought separate Vit C, B complex etc, but I wasn't taking them for long before stopping for tests.
Strangely it seems like most of my numbers improved, which could be due to the cleaner diet, I suppose. Yet I don’t feel any better. The cortisol test clearly shows adrenal problems and I’m sure improving that will help support my other health issues.
I have put a screenshot of cortisol in case it gives a better indication. As I now understand the numbers/ranges aren’t as good on this one.
Sorry for the lengthy post, I wanted to give as much information as possible. Any advice would be much appreciated.
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Pengswin
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Thanks SlowDragon , I now take the B-Complex from Igennus, which does have the folate, so hopefully will see an improvement. I will look into the Vitamin D mouth spray as well.
Waking - 6.16 (6-21) 1% of the way through the range
12.00pm - 2.02 (1.5-7.6) 8.5% of the way through the range
16.00pm - <1.5 (0-5.5)
Bed - <1.5 (0-2)
I'm afraid you didn't choose a good test. Getting four results is ideal - but you are comparing the third and fourth results to reference ranges which include zero (only healthy for a corpse), and the testing machine used obviously can't measure very low levels and so you get an inexact result supplied. For future reference the best test is the Regenerus Labs test - it does the right number of tests, you get a DHEA result as well as four cortisol results, the reference ranges don't include zero, and they supply results even when the amount is very low.
show that your first result should be at the top of the range, not the bottom. And your second result should be around 6 i.e. about three times what it currently is.
The very first thing you should do in relation to your cortisol is show your cortisol results to your doctor and ask for a cortisol blood test. Make sure that the blood is drawn around 8.30am - 9am. On the morning of the test don't eat anything, don't drink anything except water, take your thyroid meds as usual, don't be late and cause yourself panic or anxiety, don't exercise, speak as little as possible, don't gossip. The idea is to be as calm as possible until after the blood draw.
Once you have a result, make sure you get hold of it and the reference range and post in a new thread on here and ask for feedback.
If your doctor says it is "normal" and won't help you then there are some ways and means to improve your cortisol levels, as long as you don't have Addison's Disease or adrenal insufficiency caused by some other condition.
Look up the signs and symptoms of the conditions described in the above two links and decide if any are relevant to you. This website should also be helpful :
Iron - Optimal = 55% - 75% of the way through the range = approx 21.6 - 26
TIBC can be affected by other things besides iron levels. For example, having a fatty liver or some other liver problems can lower it. I wouldn't use it as a reliable indicator of whether or not supplementation is needed. I would use iron, ferritin and transferrin saturation to make decisions about supplementation instead.
UIBC has the same issues as TIBC.
Transferrin saturation - Yours is too low showing that your blood has insufficient iron in it. You need a result of around 35% - 45%.
Ferritin - Optimal = half way through range = approx 80 - 85.
So, you need to increase your serum iron, your ferritin and your transferrin saturation. Your results aren't dreadfully bad. But you would feel better if you could get your levels optimised.
When trying to improve iron don't go above optimal on any of iron, ferritin and transferrin saturation.
You could improve your iron results with iron-rich food. See this website for info on iron-rich foods :
If you want to try iron supplements then let me know. Be aware that taking too much iron is poisonous and the body has no mechanism to get rid of it. So testing iron regularly and fairly frequently when actively trying to raise your levels is essential. This is the best iron test I know of, plus info on getting a 10% discount :
You've obviously improved your nutrient levels. Just for reference, what you are aiming for is the following levels :
Active B12 - Minimum of over 70, preferably over 100. Top of range is fine and not alarming.
Folate - Top half of range i.e. approx 15 - 26.8
Vitamin D - Optimal is usually quoted as either 125 nmol/L or 100 - 150 nmol/L. SeasideSusie often mentions vitamin D and co-factors required (magnesium and Vitamin K2) .
Like you, I have difficulties increasing my folate - it is often low despite me taking a B Complex. So I take an additional fairly high dose methylfolate supplement three or four times a week. An interesting link on folate that is worth reading :
Thanks for being so thorough humanbean , you obviously know your stuff!
I did the Medichecks cortisol saliva before reading that it wasn’t the best, so I will look into getting one of the other ones now. I suspected that it was low because of how I was feeling. I don’t think I have Addison’s Disease, as I don’t have a lot of the signs listed from your link.
I did actually have the cortisol blood done as part of the general check along with the others recently. It was done at 8.30am before food, but she was unable to find a vein and ended up triggering quite bad neurological symptoms. It was stressful and upsetting so, not surprisingly, the result was over range at 524 (166-507). I didn’t include it in the original post as I thought the saliva was more accurate. I suspect I would have the same problem any time I try and take morning blood, as my disability is at its worst in the morning and it is always a difficult and stressful endeavour.
Are you suggesting it because you think the doctor will want to treat it and won’t accept a saliva result? Do you think it’s too low for an OTC adrenal cortex supplement?
I haven’t been diagnosed with any thyroid disorder or Hashimoto’s, so am not on any thyroid medication at all.
In terms of iron, I would like to try raising it with foods first. I do like liver and often make my own pate.
Thanks for the optimal vitamin amounts, I will look into a separate methylfolate supplement if the B-Complex doesn’t do the job.
Oh and I will fix the TSH typo, thanks for pointing it out
It was stressful and upsetting so, not surprisingly, the result was over range at 524 (166-507).
That is actually a comforting result under the circumstances. Nobody with that result could possibly have Addison's Disease. Your adrenals can produce cortisol in quite large amounts. So there is no justification for seeing your doctor for a blood cortisol test or paying for another saliva cortisol test just now. You can go straight to doing what you can to improve your results.
The difference between saliva cortisol and blood cortisol is that saliva cortisol measures only "free" cortisol, which is cortisol in the state that the body can immediately make use of. It's analogous to testing Free T3 versus Total T3 - the Free test is more informative.
Cortisol in the blood stream can be in the "free" state, but the majority of it is attached to transport proteins. See this link :
Before the body can make use of cortisol it must be split from its transport proteins. When testing cortisol with a blood test what is being measured is Total Cortisol.
Unfortunately, many doctors only believe the blood cortisol test which they do at random times, mostly ignoring the circadian rhythm to the production of cortisol, and ignoring the fact that a "normal" result at, say 9am, tells you nothing about the level of cortisol at noon, or 3pm or 11pm or whatever. Saliva cortisol give you information about cortisol throughout the day and is far better than the blood test - but try telling doctors that!
By the way - NASA uses saliva cortisol testing for its astronauts.
Some links you may find helpful even though some are old and some links within the posts may be broken :
Be aware that in researching cortisol you may find a lot of references to adaptogens. I wrote this post on the subject and the replies I got were informative and worth reading :
There is so much useful information here, thank you. And for putting my mind at rest about a follow-up blood test. I will just wait until it is time to re-test the saliva and use the recommended lab instead.
Multi-vits are not recommended for multiple reasons:
* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.
* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.
* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.
* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc.
* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.
* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.
With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is either pointless or even dangerous, as with calcium, iron or vit D.
You have Hashi's, as shown by the high antibodies. Antibodies fluctuate all the time, but whether they go up or down is irrelevant. Once you've had a high result, it means you have Hashi's, and Hashi's doesn't go away whatever the antibody levels. What's important is your hormone levels: FT4 and FT3.
Thanks greygoose , the multivit I took didn’t have any iron, but I wasn’t a fan so didn’t take it for long. I’m now sourcing individual supplements, but stopped to get testing first. I still need to get the red cell magnesium and selenium tests, before I look into those. I have never tested iodine, but don’t take it as a supplement.
You mention that I have Hashi’s, but I have never been formally diagnosed despite my GP seeing the raised antibodies. Is that quite common with the NHS and should I push for her to document it do you think?
However....as you are making significant progress on results, at this stage you probably want to hold off starting on any thyroid replacement hormones unless you have to
Getting vitamin levels optimal and retest again in 2-3 months
My suspicion is that they don't mention it because they don't know enough about it to answer any awkward questions, like 'what is it?' and 'what does it do?' In fact, they don't know anything about it and, if you ask, will tell you that the antibodies are irrelevant and mean nothing. Which is patently not true.
However, it's important that the patient knows, so that if they suddenly start feeling hyper, they know why and don't go rushing to their doctor and have their dose reduced.
I struggled with the magnesium and bowel tolerance
There are lots of different kinds of magnesium supplement and they don't all cause diarrhoea or bowel intolerance problems. I'm guessing that you tried magnesium citrate - this is good if you need a low dose laxative, but not good otherwise.
I actually tried a few...citrate, glycinate, malate, threonate. They either caused bowel problems or gerd issues. The threonate didn't cause any problems, but is a very small dose. I then tried the oil, which was ok but I don't think I used it enough as it made my skin even drier. I have seen a liposomal one which is supposed to be tolerated better, but I want to have the red cell test first.
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