Hi lovely people! You've been so helpful to me over the last 6 months, can I ask some more advice please. I am hypothyroid and take 100 levothyroxine daily. However, I am sooo tired still, my legs ache when I climb stairs and when I get up from a seat it takes a while until I can walk properly. I have terrible heel pain. I am also getting a cramping feeling in one of my legs. I get pains in my fingers and in my toes. I went to bed sobbing last night as I am so fed up with everything.
Anyway, after reading all the helpful advice on this site, I booked myself in for a private blood test to check iron levels, vitamin levels, etc. The results are back and these have been highlighted:
Transferrin Saturation 11.8 (20 - 50)
Ferritin 8.6 (13 - 150)
iron 8.0 (10 - 25)
Vitamin D 31.3 <25 severe deficiency
25 - 75 borderline ranging to insufficiency
Everything else (TSH, T4, Vit B12 etc) was within range
As I say, I went privately for this test and the private doctor has emailed me highlighting the above areas.
My question is, do these results explain my fatigue and aches and pains? What steps do I take next? Do I go back to my doc and show her these results and ask her to help me or do I take over the counter vit D & iron?
Your advice would be greatly appreciated x
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Tweetypie28
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Yes they do, especially the iron result. My transferrin sat was 12 and I felt really awful - like I had to drag myself around (endo thought that was a good description) but since I have managed to up my ferritin level to 63 (transferrin sat still only 17 though) I am a different person.
You need to go back to your GP with these results and ask him to prescribe supplements. I have had to have a couple of high powered courses of VitD but my level was a lot lower than yours plus my parathyroid level was high.
You SHOULD be put on ferrous sulphate 200mcg iron tablets by GP (but you must take these with a good vitc powder, or you wont be able to absorb them, and on a full stomach so they don't damage the lining of the gut). If he refuses (which I don't see how he can because your levels are worse than mine) then you will need to buy a good supplement yourself.
Not to sure if your are "within NHS limits" for supplementing regarding the VitD - but you are deficient so if your GP does say no then you will need to ask on here for the name of a good supplement.
p.s. forgot to say that whilst your iron is so low your body will be struggling to use your thyroid medication so having both iron and vitD low is a double negative.
Hi Moggie, thank you so much for this, Ill make an appt now. My doctor was aware I had low iron from a test a while back but didnt prescribe anything, just told me to take an over the counter vitamin plus iron which I have been doing but clear this isnt doing the job!! Im like you were, literally dragging myself around wondering why on earth I feel so rubbish when my thyroid levels were normal! Thanks again x
I have been on ferrous sulphate - given to me by my GP (although like yours she decided to ignore my low iron until my endo stepped in) for 7 months now so it is a very slow process. You can take the iron with pure orange juice, which is fine if you buy it already but will work out expensive if you don't, but I prefer the Lamberts VitC powder (sounds expensive at £15'ish but has lasted me 7months and still going as you only need a tiny amount)
You must take the iron (and vitD) at least 4 hours away from your thyroid meds or the absorption of your levo will suffer. I take my VitD just before lunch, my iron just after lunch, on a full stomach and then my levo last thing at night and this seems to be working fine for me.
I hope your GP will see sense and prescribe you what you need but if not ask another question on here regarding iron and vitD supplements others use.
I aim to get my ferritin level above 90 (above 80 and it is supposed to stop hair loss) but at 63 I already have loads more energy, brain fog is almost gone, no longer get out of breath going up stairs and have had to REDUCE my levo twice, which I think is because my body is now able to covert my T4 into T3 better and transport T3 into my cells better (if you want a link to this to have a read let me know)
Sorry for the long answer but wanted to stress to you how important iron has been to me.
No, dont apologise for the long answer, it all makes so much sense and really helps. I am going to docs tomorrow, going to take my husband too as I am going to fight for an iron supplement and may need back up! I cant continue like this, quality of life is pretty poor right now and as I run my own business, its tough! I dont care how much the vit c powder costs, if it works, Ill pay it!!! (wrong attitude maybe but desperate measures are needed!). Thanks Moggie, just wish docs would understand the importance to have all these levels at the right place, arghh! x
Did you manage to lose any weight (if in fact you suffer from weight gain with your thyroid problem) once your iron & vit D was sorted? Sounds very vain asking this but tried to diet once levo was at the right dose and thyroid readings were in range but no luck, just wondered whether this could be because the iron and vit D levels were the cause?? x
I had the same. Worth checking your digestive health as you may not be absorbing iron from your diet properly.
I have 1g iron infusions when my ferritin <100. Had to fight to get a referral from my GP here having had one prescribed in Australia. I'd been living with ferritin at 10-15 in the UK - unremarkable according to my GP. Doctors bizarrely seem split on this. I go by symptoms. I had similar achiness and felt rubbish. My UK hematologist infuses me when it drops below 100 now.
Reason I mention digestion is - have you been checked for Celiac/Crohn's? Damage to the digestive tract can affect absorption of a raft of vitamins (D and B12 are common) as well as iron. You might also have another autoimmune condition like anti-gastric parietal cell antibodies that affects the stomach. In Australia they refer to the thyro-gastric cluster (Hashimoto's/hypothyroidism, Crohn's and anti-gastric pareital cell Abs).
You could check out your autoimmune symptoms and digestive status at wilsonhealth360.com - takes you through the process from autoimmune through digestion. Free advice.
Hi Many thanks for this. Currently at work but will have a look at this site this evening when I get home. Funnily enough, the private docs comments mentioned something re absorption/gut etc. I may need to look again at his results, perhaps I missed something. Thanks for replying x
Just did the Wilson questionnaire (isn't it looooong) and although I only scored 9 out of 15 for hash's (which I have got) I was surprised to find that I scored 10 out of 11 for Pernicious Anaemia.
Just clicked into the link that skyfall kindly provided and at the top of the page is a box headed "manage your condition", clicked on that and the first drop down box is "WH360 symprom checker", answered a very long list of boxed questions and then got a list of results.
Hello Moggie...yep the checker is long and we've only used the main symptoms advised by the NHS and the doctors who've vetted the site or it'd be longer! The issue - of course - is that so many autoimmune condition symptoms overlap but some (a very few) are really specialised...eg. discoloured creases on hands and gums for Addison's.
On your results...
9/15 for Hashi's if you're well-managed on treatment looks high to me. Have you checked your antibodies for pernicious anemia (would show up as anti-gastric parietal cell Abs)? I have that and Hashi's - my Australian GP describes these two as part of the thyro-gastric cluster - which also includes Crohn's. Here's a reference that you can paste in to see what's in the cluster...needless to say this is from medical researchers so it's written in sci-english (I can translate if you need me to...)
Thanks so much for your answer - is this a standard test and will I be able to ask my gastro next month for it.
May take your kind offer as a translator up if I cant understand the link.
My hashi's has not been managed very well due to low iron, low vitD and low'ish B12 but am slowly correcting one after the other and feel so much better than I did 6 months ago. Not quite there yet (gut issues????) but hope the gastro will provide the missing links.
If I do need to ask further questions would you mind if I PM you.
PM me any time...the iron, B12 and vit D issues look like they're digestion-related to me...just a hunch based on what I went through
1. diagnosed Hashi's in U.S post-partum
2. felt rubbish - Aussie GP check Abs and found anti-gastric parietal cell Abs - this affects B12 and iron metabolism plus damages stomach lining and can affect gastric absorption
3. sent me to gastro who check for Crohn's. Early stage. Well managed with lots of fish oil capsules (high strength from practitioner) vs sulphur based drugs that made me sick...
UK gastro agrees on this course treatment of Crohn's management.
Am on the specific carbohydrate diet (plus kefir) - am slowly coming off thyroxine all together and all my symptoms have pretty much gone. The best part is the bone-crushing tiredness is gone and I've started to shift the excess weight...so I'm quietly confident that the underlying cause that led to my Hashi's (damaged gut) has been dealt with. Good to know your body has the ability to regenerate any type of cell so you can heal...just takes time!
Re digestive stuff - strongly suggest you consult Jayne Wilson at wilsonhealth...she's VERY good at dealing with the gut and will provide free initial review of your checker results and next steps. The site also offers meal-plans, shopping lists and links for sourcing food online to help deal with any gut issues.
Just wanted to add, you say the other results were in the normal range. This doesn't really mean they're OK. It might be worth posting all the test results in case something else looks out of whack as well. Although I have to say with those iron and vit D levels I'm not surprised you feel awful. Did they test calcium? Need to make sure that's OK before taking vit D.
I will do. Thank you again Moggie, Ill let you (and others) know how I get on tomorrow. Probably wont see the usual doc as I will go as an emergency appt rather than a pre made one with the normal doc I see - could be a good thing?? (Lets hope its not a bad thing, lol xx
Did you see my reply to you above asking if you managed to lose any weight once everything was at the level it should be?
Same here - maybe the sites none to well but I am pretty pee'd off that it lost my answer to you regarding weight as I'm going home now (been at work would you believe but only thing I have got done is question answering.lol)
Will try and answer again but the short answer was NO which, I think, is down to gut issues.
You are real quite low....I was about 12 and felt yuk. If the pills the doc gives you for iron upset your tummy.....get some pills from solgar.co.uk/SolgarProducts... .....they raised my ferritin level without sore tummy and they have b12 in it. If you shop around you can get the price a bit lower....good luck
Thank you for thinking of me. Just got back. I have been given Ferrous Gluconate 300mg and Fultium - D3 800IU tablets plus she has asked me to research an endo (we are with BUPA) and she will refer me. She also told me to take a holiday in the sun. Hubbie was with me and when we came out he said hethinks it might be a good idea if we do this!!! So great results all round I think!
This site is amazing. I honestly thought at first she was just going to fob me off with "buy an iron tablet over the counter and some vit D, take a holiday, let the Levo kick in some more and youll be fine" but because I went armed with knowledge she did what she did. Never really got that saying "knowledge is power" I do now!!!
Thanks again for your concern and your help.
I run my own business and always get charities coming in to ask if they can leave a tin or some sweets or whatever and I do my bit but have never had anyone asking me to support Thyroid UK - is there any way I can make a donation to the charity do you know? This site has been my life saver and I want to give something back x
What a great result - and a holiday to boot - 800iu vitD wont do too much I'm afraid. 1,000iu is a maintenance dose and will keep your levels as they are so 800iu wont increase your levels very much, if at all. Give it a go though and ask for a re-test in three months to see what your levels are doing. If it were me I would be taking 2,000iu for a couple of months to try and get things moving, but then that's me. At the moment I am taking 3,000iu's daily and my vitD is still only 70 (which is classed as sufficient and not optimal) so have upped it a bit to see if I can get to 75, although I think there is something else going on with my vitD so don't take to much notice of what I am taking will you.
Great news about the iron supplements as well - these should make a huge difference. Just found this on the net as I am on ferrous sulphate and wanted to know the difference.
If ferrous sulphate is not suitable because of side effects, you may be prescribed a different iron supplement called ferrous gluconate. This supplement should cause fewer side effects because it contains a less concentrated dose of iron. However, it may take longer for iron levels in your body to be restored.
It has taken me 7 months to get my iron levels moving with ferrous sulphate (which appear to be stronger) so don't be surprised if you are on these tablets for well over a year. Don't forget that you need to take your iron, at least, four hours away from thyroid meds and with food. If you want a link to a really good vitC powder let me know. You really only need the tip of a teaspoon full in orange squash so the VitC powder lasts ages.
Sorry that I didn't pick up your great news sooner, to stop this happening again if you use the "reply to this" button on the persons reply they get an email alert to say you have answered them.
Yes knowledge is power and the more knowledge the more you will notice that your GP will listen and help (its a shame it has to be this way but there it is)
As for donating to thyroiduk here is a link to their main site and you will see on the left hand side a "dontate" button.
I see this message was from a few years ago but your message is exactly how I feel. I have hypothyroidism, low iron, vitamin d & b 12. I am in pain and so tired. Wondered what ended up working for you?
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