Hi, apologies for long post. I’m a 34yo female. I’ve had symptoms that line up with hypothyroid symptoms for years. Had a few tests when my eczema flared up really badly around 12 years ago, which coincides with the time that a lot of the symptoms began. Have had fatigue basically since catching Epstein-Barr virus (glandular fever) when I was 17.
The earliest thyroid test I can recall having was maybe 8 or so years ago, and my TSH was over 4 and my Ft4 was very low but nothing was done at the time. I no longer have copies of these results.
A couple of years ago, I pushed my GP to investigate the symptoms. She ordered some blood tests and my PTH (parathyroid) hormone came back high, and my VIT D was low. I started supplementing to boost my D levels. My parathyroid remained high as I was tested every 4 months, but didn’t drastically change and my calcium was the high range of normal, so under the advice of endocrinology, my GP stopped regularly testing for this.
I was referred to rheumatology as I consistently had slightly raised ESR (rheumatologist wasn’t concerned) but diagnosed me with fibromyalgia. She stressed the importance of restorative sleep (I had two children 13 months apart, one in 2018 and one in 2019 so sleep hasn’t exactly been a priority) and thinks all health issues triggered from my awful skin flare up in 2012 and the high doses of steroids/immunosuppressants I was prescribed at the time.
I managed to prioritise sleep a lot last year and stressed the importance of it to my husband, and felt a bit better most of last year, up until October time and I’ve just felt rubbish since.
I just had a private medichecks thyroid check with venous draw at my mother’s insistence. My ferritin and folate are low (bit of background: I have had low iron/ferritin levels since my first pregnancy and haven’t been able to raise them much. I had hyperemesis in both pregnancies, went completely off meat and it still knocks me sick so have been vegetarian since 2018, also had an emergency section with my first and planned section with my second and having two pregnancies so close together didn’t give my iron levels chance to recover.
I’ve also had some symptoms of ulcerative colitis including an elevated calprotectin test but still waiting to see gastroenterology about this. It runs in my family but symptoms currently under control. I was prescribed 675mg a day of iron supplements during second pregnancy and had awful bowel side effects, including high calprotectin, mucus and blood, didn’t absorb any of the iron and my levels raised more with 4 Spatone sachets a day than from the supplements prescribed so am wary of taking high dose iron supplements).
I supplement b12 already but this is the low end of normal. I’ve been taking 10,000iu of vitamin D (with co factors) most days since my low D test in 2022, but the levels are still not in the optimal range. This could also be due to the parathyroid issues.
I’m at a loss of where to go from here, but just want to feel somewhat normal, it doesn’t feel fair on my kids that I’m tired all the time and in bed every opportunity I get. I just wanted to get some advice whether I should pursue this at all and if it’s worth seeing a private endocrinologist (I’d be self funding an appointment as no private insurance and looking at the doctor who runs ‘Endocrinology Scotland’ currently as an option.) I’m also wondering if as well as the initial consultation, whether I will then have to pay for more blood tests or scans etc. I’m not really sure how to interpret everything and where to go from here and hoping to get some advice or perspective on my results.
May also be worth mentioning that one of the symptoms I suffer is hair loss, and have recently noticed a lot less shedding since using plantur39 which is for ‘over 40 hair’ ie hormonal issues, menopausal issues, which for it to work for me at 34 seems to point to an underlying hormonal problem. My results are below:
Vitamin D (50-250 range)
04/22 - 31nmol
07/22 - 42nmol
02/24 - 55.1nmol
Ferritin (30-180 range)
03/22 - 26ug
02/24 - 15.9ug
Folate (7-35 range)
02/24 - 6.4nmol
B12 (37.5-188 range)
02/24 - 50.1pmol
TSH (0.27-4.2 range)
05/21 - 2.52
04/23 - 2.2
02/24 - 2.3
FT4 (12-22 range)
05/21 - 14.1
04/23 - 15
02/24 - 13.6
FT3 (3.1-6.8 range)
05/21 - 4.9
02/24 - 4.6
Anti-Thyroid Peroxidase Antibodies (0-34 range)
05/21 - <9.0IU
01/24 - <9.0IU
Anti-Thyroglobulin Antibodies (0-115 range)
05/21 - <10.0IU
02/24 - 13.1IU
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Sorry to hear you've been having such a lot of problems, and they do sound like hypo symptoms, but to be able to reply to you in any meaningful way, we need the ranges for those blood test results. Impossible to interpret them without because ranges vary from lab to lab, so we always need those that can with yours.
That said, your TSH is saying that your thyroid is beginning to struggle, although you're not yet hypo, I don't think - need the ranges to be sure.
I supplement b12 already but this is the low end of normal.
What exactly are you taking for B12? Are you taking a B complex with it? Symptoms of low B12 are very similar to hypo.
Your hair-loss could be due to your low iron/ferritin.
Hi, thank you for your reply 🙂 I’ve updated my post to include the ranges. The B12 I’m taking is Methylcobalamin and I take 2000ug a day. I also take a multi vit that has B1 (2.2mg), B2 (2.8mg), B3 (48mg), B5 (18mg), B6 (4.2mg), biotin (50ug), folic acid (200ug), iodine (150ug), iron (3.5mg), and some other essential vitamins. I take 2x Spatone sachets a day in orange juice (Spatone doesn’t irritate my bowels), and I take k2 (mk-4) and magnesium glycinate as co factors for vitamin D, plus zinc and cod liver oil. As well as being vegetarian for the last 5+ years, I also have a sea food allergy and a very sensitive stomach when it comes to lentils and pulses (even a small amount will have me running for the toilet). Hope all this extra info helps clarify!
I should also mention I had monthly b12 injections at my local chemist last year. Maybe 3, but can’t remember doses and didn’t feel any difference. Wasn’t a loading dose and as my GP doesn’t regularly check b12 levels, I have no idea if these made any difference
I also take a multi vit that has B1 (2.2mg), B2 (2.8mg), B3 (48mg), B5 (18mg), B6 (4.2mg), biotin (50ug), folic acid (200ug), iodine (150ug), iron (3.5mg), and some other essential vitamins.
OK, well that's not going to do you any good. The iron will block the absorption of all the vitamins and iodine could be making you worse. Iodine is not recommended for hypos. So, you're just pouring your money down the drain by buying that.
What you need is a B complex that only has B vits in it. And one that has methylcobalamin and methylfolate.
If you take vit K2-MK4, you need to take it a couple of times during the day because its half-life isn't very long. MK7 lasts longer.
The Spatone doesn't seem to be doing you much good because your ferritin is still very low. When you take iron, do you take vit C with it? That helps.
Did you get your zinc tested before supplementing? Hypos can sometimes have high zinc already, so adding more isn't advisable.
Your Frees are rather low compared to your TSH. So, you might have a sluggish pituitary.
Thank you so much for taking the time to reply. Is there any particular brand of b complex that is advised? I can stop the multi vit and switch to a B complex.
I started the mk-4 version of k2 as it was advised through the D protocol page and take twice a day, but I can get some mk-7 if it’s more effective.
I do always take C with iron, I don’t know why I have such a hard time absorbing it but it’s always caused bowel issues for me. My mother who had colitis is the same. It’s unfortunate I can no longer stomach meat.
I will also stop taking zinc, I’m not aware that it’s ever been tested (I have some print outs of previous results I obtained through GP and didn’t see it anywhere, it took me around a month to get these after requesting and it was mainly to track my parathyroid results).
Please excuse my ignorance, but is there anything I can do for a sluggish pituitary? Should I continue with new vitamin protocol to see if it improves or is it worth paying to see an endocrinologist privately? I appreciate all your advise. Thank you
You probably have low stomach acid which affects absorption. You could try the bicarb test at home. Sorry, I can't remember the details off-hand, but if you google it you'll get plenty of information.
I will also stop taking zinc, I’m not aware that it’s ever been tested
Doubt if it has. It's not one that's done without asking.
Please excuse my ignorance, but is there anything I can do for a sluggish pituitary?
Not that I know of, no. But pretty sure supplements aren't going to help it - although you should continue them anyway. You need optimal nutrients for all sorts of reasons.
is it worth paying to see an endocrinologist privately?
Not just any old random endo, no. Because most of them are diabetes 'specialists' who know next to nothing about anything else. But, if you can root out one that knows about pituitaries, then that might be worth a try - they do exist.
Is there any particular brand of b complex that is advised?
Thorne Basic B is a good one. Or Igennus. There are others, but I can't remember the names. You want one that has methylcobalamin and methylfolate, rather than cyanocobalamin and foic acid.
When you have your thyroid tests, do you have the blood draw before 9 am and fasting? That's when the TSH is at its highest.
I can’t remember previously but the blood draw I just had on Tuesday, I had done at 9am as it was the earliest I could get and yes, it was fasting.
Thank you for the advice about the B complex, I’ll get some ordered ASAP. Will also google the bicarb test.
I have a telephone appointment with my GP on 18th March (couldn’t get any earlier) and will see if they will do any further testing. Won’t hold my breath though.
I’ll also research specialists and see if any seem worth making an appointment with.
Thank you so much for all your help. It’s nice to know that there are people willing to offer advice when everything feels so hopeless and overwhelming!
Regards the K, they are pretty much the same EXCEPT mk-7 has a longer half life so if you have a choice might as well go with the mk-7.
And just reread your post, taking k twice a day is unnecessary complication especially since there are actual buffers you need to work around with iron, D, etc that actually need some room.
Incidentally, I’ve read both that you should take 100 mcgs daily OR 100 mcgs per 1000 ius of D. I’ve read the research and as far as I can tell it’s a little inconclusive/untested, although consensus if you can’t over-dose K. I hedge my bets and take 7500 D and 3-400 Mk-7
Also, here’s my favorite D calculator, shared often on this forum.
Thank you, I have an appointment with the GP in a few weeks who was previously checking my parathyroid regularly so will ask while I’m there! Thanks again
Hi, your Ferritin is in the extremely deficient category (according to the latest research), which chimes with your medical history, and could be causing a lot of your symptoms. I would investigate private iron infusion as you struggle to tolerate oral and are veggie.
If you are in Scotland it’s tricky and I’m not aware of any providers though that may have changed. I’m in Glasgow and travelled to the Iron Clinic in London for mine a couple of years ago. They look at your full iron panel and check that it is appropriate for you. When I was looking there was a clinic doing them in Manchester too, it was possibly the Nuffield.
If it’s just not an option I would try one ferrous fumarate no more than every second day - it’s now recognised by latest research that your body can only absorb a certain amount of iron in a 24hr period and any more will just cause gastric upset.
There is still a clinic in greater Manchester, Spire, I had an iron infusion there last year. I'd already consulted with a B12 & iron specialist in Cambridge and had a phone consultation with the Spire haematologist, who's very good.
I'd get a full iron panel done and also do the relevant tests for PA/B12 deficiency - post on the PAS forum for further advice. All your important vitamins are low.
Mixteca is correct, you need a full iron panel. Unless I missed any recent iron numbers, you should never supplement iron without knowing your iron number.
Thank you for your reply. Just Spatone (the iron rich water sachets) in orange juice. I struggle to tolerate any amount of oral supplements and get raised calprotectin levels and symptoms of colitis. I have a telephone appointment scheduled with my GP on the 18th (couldn’t get any earlier), so will request a full iron panel then. When I requested print outs of previous blood tests (which is how I know my previous ferritin level), my ‘mean cell HB’ was 26.3 (range 27-32) when last tested in March ‘22. This was never brought to my attention. I’m not sure how to interpret that, but the ‘mean cell HB concentrate’ was 331 (range 310-360). Again, not really sure what this means but I think this is related to iron?
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