Long story short..... have just had results back from hospital admission in November. They include vit D of 173 and ferritin of 10!
Dealing with the vit D issue isn't such a problem, just a matter of getting supplementation level correct. I keep being told I'm low one minute then high the next. Yet they're always reluctant to do the test. And they've never prescribed Vit D, I've also sourced and paid for it myself! And 10000iu/day seems to take me too high, whereas 5000iu/day gets me too low. And it would seem that even aiming for 7500iu/day by taking 1 tablet one day and 2 the next is taking me too high. Or is it? Is 173 ridiculously high?
Anyhow, main issue is the iron. Clearly I need supplementation BUT I absolutely cannot tolerate oral iron in any form whatsoever. It bungs me up like concrete. And I already have quite severe problems in that department (Sjogrens, APS, steroids, hypothyroid). So I will need infusions. What experiences do you all have (a) of getting these from your NHS GP and (b) the effects/side effects of the infusions themselves?
Also, I seem to recall many posts saying we need to be at a ferritin level of at least 70. Is that right? And why is that? What happens/doesn't happen below that level?
Can you direct me to any supporting evidence to wave at medics if they prove truculent?!
Many thanks.
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Coppernob
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If you're on medication for your thyroid apparently it won't work well unless it's in at least the 70 area. My ferritin is very low too...12 in September gone down to 7 now. I don't do well with iron tablets so I've decided to give Floradix a good go. It's very gentle on the tummy,doesn't make you constipated and after you get used to the weird flavour you're ok. I've used it in the past very successfully so I am hoping it will do the trick again this time. You can buy it in health shops or online and I think I have seen in some Tescos too.
No advice on the vitamin D...how weird that your levels keep swining from high to low. I'm very low on D too and on 5000 x day at the moment so I am curious to see what results I will get after 3 months of this dose.
I'm sure someone else will be along with more info for you and links to help you.
Hi Copper, As far as vitamin D, lately I have read to separate doses by several days. Perhaps you have loads floating about the blood stream that show up since you take it daily. If it takes a while to metabolize, maybe it would be better to take larger doses twice per week.
This is what STTM says about ferritin:
FERRITIN test: Measures your levels of storage iron, which can be chronically low in hypothyroid patients. If your Ferritin result is less than 50, your levels are too low and can be causing problems…as well as leading you into anemia as you fall lower, which will give you symptoms similar to hypo, such as depression, achiness, fatigue. If you are lower than the 50′s, you are scooting by. Optimally, females shoot for 70-90 at the minimum (Janie’s is 80 when her iron is good); men tend to be above 100 and optimally close to the 130′s. If your ferritin is much higher, you have INFLAMMATION–the latter causes iron to be thrust into storage and inflammation is common with thyroid patients for a variety of reasons. In less common cases, higher ferritin can be from liver disease, alcoholism, diabetes, asthma, or some types of cancer. Men are generally higher than women without having the above problems. If ferritin is high along with a high % Sat and Serum iron, you may have hemachromatosis or a MTHFR defect. You should be off all iron for at least 12 hours before testing to see what your body is hanging onto, and 5 days to see your true iron levels.
You can buy it from Canadadrugs, not cheap but you only need one tablet a day and it bypasses the stomach:
"FeraMAX® 150 is an oral iron supplement formulated with polysaccharides in a stable complex. It is manufactured by a specialized process whereby the iron is coated with polysaccharides (starches/sugars). This coating allows the iron to pass through the stomach relatively intact where it is absorbed through the small intestine and is then delivered to the bloodstream."
A few people on the PA forum use it with good results, no constipation and most importantly it has improved their iron levels.
Just another option to try if you didn't fancy the infusions.
I had similar issues, only iron supplements didn't bung me up, but the opposite! I had no help from the NHS at all, even when my ferritin was at the bottom of the reference range. I finally got it up to a decent level 70+ by taking iron supplements from these people cytoplan.co.uk - no diarrhoea at all and my levels rose steadily.
Hi Vit D often high because calcium is over range and some times Parathyroid.For this you need a blood test for all 3, together if all over range, must be done in the morning, then A nuclear scan + Ct for parathyroid and ultra sound for thyroid. if no cause founds and calcium over range, somethings needs doing..calcium is a n electrolyte, they must always be in range.
Iron/ferritin is usually only give by GP`is if u der range. Endo`s like it higher, but about 60 usually. However, the absorption % is the most important, should be near the top, mine is 7% which means I need a lot more than normal. ( Endo)This test can be done at GP`s or privately. Ofen Spatone liqjuid is easier to digest. In any case vit C should be taken with the iron.
Thanks, unfortunately, can't tolerate lactulose either! Makes me bloated and doesn't UNbung me! It's a challenge.... I do take Vit C but maybe could take more once iron is introduced, worth a thought, thanks.
Hi, I was severely constipated a few weeks ago so was worried about iron too. But I have been taking 2 x Spatone sachets in orange juice & also 2 x 1000mg Vit C disolvable tablets each day - not constipated now!
You might consider liver - I don't like it as food but I found you can buy desiccated liver in either tablet or capsule form. It's arguably the best source, bar none, of natural iron (heme iron) - it's easily absorbed, doesn't require vitamin C, doesn't constipate (AFAIK), and it's hard to overdose on as the body absorbs it as needed using a different mechanism to the one it uses to absorb non-heme iron (basically all supplements).
I buy mine from iHerb because the brand I get "Nature's Life Beef Liver" is better and cheaper than the locally available options even after shipping costs. 6 of their tablets, which admittedly are quite large, provide 28mg of iron (156% RDA). I felt better within a few days which astonished me.
On the vitamin D, the next time you get a test try to avoid supplementing for a few days before. Nothing to lose doing that.
If you get bunged up all the time there are probably loads more laxatives (and types of laxative, enema or suppository) available from your pharmacist than you have previously been aware of - perhaps you could research a few of them, you never know what might do the trick for you. A lot of them are available without a prescription, and it will be up to you how many of them you want to try. The British National Formulary (the doctor's guide to what they can readily prescribe) is available free online now, and is well worth investigating :
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