Following a very frustrating gp visit where I told her all about my symptoms, my family history of both Hashimotos thyroiditis and pernicious anaemia and still somehow left with nothing but a pat on the head I decided to have my own blood tests done. I think I've worked out from the results of the active B12 bit that I'm unlikely to have pernicious anaemia. But the thyroid stuff seems much more complicated and I could really do with a bit of help understanding the results before I decide to go charging back into the surgery with all guns blazing
Hopefully some of you lovely folk will have a better idea of what all this means than I do. I'd certainly be very grateful for any assistance you can offer..
Your Vitamin D is very low, are you taking D3? Also, your Active B12 result falls in the ‘grey area’ and an active B12 test would not rule out pernicious anaemia.
Have you had MMA tested?
And have you had intrinsic factor and parietal antibodies checked? They’d be a better indicator for pernicious anaemia.
hi stacyx, no i'm not taking d3 - what is that? a vitamin d supplement?
i did have an mma test and homocysteine but i forgot to add those results! I also had an intrisic factor antibody test but those results aren't back yet. Here are the other results though:
Hi Londinium, thanks for the info. I was shocked at how low the vitamin D was. That test was just incidental really, it was the thyroid and PA stuff I was really wanting to investigate.
Go back to your GP with a copy of your test results and push for treatment for severe vitamin D deficiency as per your local guidelines.
Don't be afraid to point out to the GP that the Chief Medical Officers of the UK countries has told them repeatedly for the last 4 years to be on the look out for vitamin D deficiencies to ensure they don't go severe like yours is.
If you are given a prescription for 800IU per day or are told rubbish like being that deficient in winter is normal, then I'm afraid you are going to have to change your GP practice.
This is because such a GP is too thick to realise the damage a severe vitamin D deficiency can cause and is also a risk to your health in future. Your thyroid has failed but until you are well over the range you won't get treatment on the NHS or even by most private doctors in the UK.
Hi. Your tsh is highish indicating your body is calling out for more thyroid hormone. Your Free t 4 (storage hormone) is at lowest end of scale. Should be at higher end. Your Free t3 is mid/low which shows you are converting t4/t3 but your t4 so low that you hardly have any t4 hormone to convert into t3 so your body is struggling to survive on the small amount of hormone you can convert. You also have antibodies. The very convincing sign you have thyroid issues ie Hashimotos. You have a high ferritin level. You should get this checked out. Hope this helps.
i think the reason the gp wouldn't do a blood test was because she did bloods on me about a year or two back when i was diagnosed with depression - so she tested my t4 and iron then (not sure what else was on the test, definitely not antibodies though!).
i didn't realise t4 gets converted into t3, just assumed they were two completely separate things! shows how much i have to learn.. trust me to only start learning about my amazing thyroid just as it starts packing up shop ;-P
i'm hoping i get the results of the last pernicious anaemia test before i see the gp next week, as that could possibly explain the high iron levels. it's a long shot but there is remote possibility that if i have it then the PA could be producing a 'false positive' for the iron test. somehow given i'm vegetarian, and only take a bog-standard 100% rda multivitamin i don't really see how i would've managed to get over-range through dietary means. I'm wondering now if there's anything else going on with my other vitamin levels, given the only two i've had tested are out of range. it's a bit alarming to say the least.
Hello. I would have very low ferritin if I didn't bolster it with diet and supplements so your results are quite a contrast! However, this doesn't mean there isn't a problem. Sometimes you can have too much of something. There is a condition called haemochromatosis that doesn't usually become a problem for women until after menopause when they no longer have a regular bleed. I'm not saying you have it, but it'll be worth keeping an eye on those levels.
Interestingly, the symptoms of too much iron are similar to those of too little. Also co-existing with haemochromatosis can be - you guessed it - hypothyroidism!
I've also read that there can be some weird thing with pernicious anaemia re iron levels showing as falsely high so I'm really not sure what to read into that one! Although I'm really not sure whether I even have that so who knows.. I doubt I'm too high, I'm a longtime vegetarian and although I take a multivitamin I think it only gives me 100% rda of iron/b vitamins. It does give me 100% of vitamin d as well so I'm really puzzled as to how I can be quite so deficient.
Haven't heard about the haemochromatosis, thanks for the links, I'll have to read up on it. I'm in my early forties and judging by previous generations of women in my family I'm probably five or ten years off the menopause but it may well be something to watch out for given the family history of anaemia.
Multivitamins never usually raise iron levels much in my experience .. and given you're veggie that makes it even less likely that you'd have a high ferritin result - long term this can cause problems, so I'd definitely find a more knowledgeable GP who knows about haemochromatosis (it's not that rare - and is often diagnosed in the States).
I'd eventually go for new vitamin formulas with less iron and more b12 - ideally methylcobalamin. Your folate level's good so don't try to increase your intake of folic acid as that can also lead to issues, especially with low b12. Excess folic acid must be 'mopped up' by b12 to be useful... (ref: Folate cycle and Methylation).
This may be counter-intuitive advising a veggie to have less iron, but considering your very high iron levels I've long suspected that some of us are better off being veggie / vegan while others (like me) are much better off having some haem iron (animal source) due to a failure to absorb non-haem iron. It's a shame we don't get told our genetic variation and get given a manual to deal with it!
Clutter's right - you're definitely hypo, but this could be all be part of a cluster of autoimmune problems. Gluten free really helps lower antibodies.
yep, definitely going gluten-free. looks like i should cut back on kale though
i'll have to talk to the dr about vitamins, it sounds as though it's a bit of a house of cards with one thing affecting another. I'm aware of the links between vit d/calcium and vitamin c/iron absorption, but it seems there are a lot of other interactions going on.
Interesting that you need haem iron, my wife is exactly the same. Was veggie for years but had to go back to eating meat as she just couldn't get enough iron. She ended up anaemic but iron tablets and meat got her back to normal and she's doing much better now thankfully.
If iron levels don't fall back please get a second opinion as it could damage your liver. Probably worth keeping your alcohol intake moderate. It may be worth getting a liver blood test done..
When you increase your desperately required vitamin D (large doses) also consider taking vitamin k2 with it as it directs calcium into the right places. However, in your case, please check this doesn't put too much a strain on the liver while you have high iron levels. (Vitamin k is stored in the liver). You may need to seek out the advice of a proper liver doctor (hepatology) and/or haematologist re: high iron levels.
To be honest I hardly ever drink anyway - whenever we open a bottle of wine it usually takes the two of us about a week to work our way through it as we're such lightweights! I'll add liver function to the list to mention to the doctor. Particularly as one of the tickboxes I've checked off on the symptom list is 'yellow pallor'! Thanks for pointing that out, sounds pretty important..
Jaundice is a red flag to a good doctor - definitely mention how you were not always that hue to the GP - and if you have yellowing to the whites of your eyes, dark wee and pale pool it's really urgent.
Iron, calcium and magnesium block the absorption of each other and also any other supplements. If your multivit contains any of these you will not have been absorbing the other components properly, eg folate, b12 or vit D.
SeasideSusie is a good source of nutrient supplement advice, including dosage, type and timings, she sorted my deficiencies a treat, give her a search if she hasnt poped up on your thread in the meantime.
When our thyroid is struggling it affects gut function and absorption so we all tend to struggle with nutrient deficiencies and end up taking a host of supplements to counteract. We also need minimum nutrient levels for our bodys to use thyroid hormone effectively, whether our own or synthetic. There is also a huge symptom crossover, especially for symptoms like fatigue, aches and pains in limbs, memory etc. You need to sort the nutrients so you can see exactly what is thyroid related and what isnt, otherwise you can keep upping thyroid meds or think they are not working when there is an outside cause.
Print out the thyroid symptom list on HUL main page and take it to your appt. Point out that your TSH is above range, you have raised antibodies and are symptomatic so you should be treated. If they try and tell you you are only slightly above range stand your ground. They have a nasty habit of trying to wait til your TSH is over 10 - the true advice was to wait til10 if the patient had raised TSH but NO SYMPTOMS. That seems to have got lost in translation for most GPs!
If this was a one off thyroid test GP may refuse to treat until a second out of range result occurs so may request a 3 month retest - this is to rule out an anomalous test result caused by illness, eg getting over a cold or just going down with one as these do affect thyroid function. Nothing to stop him treating your deficiencies though (he will have no idea they may be the cause if some of your symptoms as most know nothing about nutrition, its not taught!)
Looks like it's got iron and magnesium in it. I've stopped taking the vitamins for now as I didn't want them affecting my b12 vitamin levels when i had the blood taken (seemed to be conflicting info on whether it affects test or not). As they've got so much iron in them I won't be starting on them again. Think I might ask for the gp to do tests to see if I have any other vitamin or mineral deficiencies. Just to make sure there isn't anything else lurking in the shadows waiting to cause problems! And thanks for pointing me in the direction of SeasideSusie, I'll definitely have a look for her once I've got the full picture.
Normally I have the digestion of an ox but the last few months I've had nothing but trouble with my guts. I've gone from having a bowel movement once a day to 3 or 4 times a day, and I'm pretty sure I could power a hot air balloon with my flatulence
Really frustrating reading through the symptom list - I've counted 35 yes and three maybe's! I told the doctor about all my obvious symptoms when I saw her (tiredness, short of breath, pins and needles, aches and pains, swollen red tongue, etc). Had no idea the tinnitus that's come on in the last couple of months could be down to it, or the deafness in that ear.
One bit of good news - I've finally had the test results of the pernicious anaemia antibodies test and they're negative so at least I haven't got that
Some test machines use a biotin assay, if they do then a b-complex with biotin can skew the results, this also goes for the hair and nail supplements as they usually have high dose biotin. I leave off the bs for a week before the test to be safe, if you look at my history i posted a link which goes into more detail, for a basic b complex you may only need to leave off for a couple of days if you are concerned. I do as I certainly dont want a false low TSH confusing them. An enquiry could be made with the lab but good luck getting that past your GP!
GPs are completely unaware of a lot , they have no idea that fasting, time of day and supplements can all have an effect on the test but it can be enough to make the difference between diagnosis/ dose raise or not.
Dont let GP say loose stool or frequent movements cant be a hypo symptom, constipation may be more common, like hypo weight gain but many are interchangeable and some do get the opposite. Also be aware that magnesium is well known for speeding things along in that direction, most of is find that a good sideaffect but you may not.
Oh heck, certainly don't want to get more regular - I'd never get anything done! I'll give magnesium a go though, can't hurt to try it for a bit to see if it helps. I'll have a look at your link, thought I was probably being a bit too cautious but given how much iron was in the tablets it probably turned out to be a blessing in disguise. It looks as though individual/narrower range of vitamins/minerals supplements (rather than one-a-day multivitamins) are definitely the way to go.
But given I'm seeing the doc on friday I'll hold off on supplementing until then. Although.. having said that I do also take a pre/probiotic and an omega oil supplement. Am I ok to carry on with these?
Unaware and apathetic pretty much describes my gp. If I can't get anywhere with her this week and I'm going to ask to see the new doctor that's just joined the practice. And if I still don't get anywhere I'm off to a new practice.
But is it just me or does there not seem to be any easy way of searching by postcode for which gps you're in the catchment area for? You'd think they'd have created something like that by now for NHS choices, but I've had no joy finding it.
Im not aware of omega three or probiotic affecting anything. I just stop the b complex and then b12, d and iron just for the day before testing, it probably isnt necessary for those but i like to make sure they are only testing what has been fully absorbed. If the magnesium tablets cause issues, try one of the topical magnesium spray oils, I dont know if it will make a difference but as it bypasses the gut it may cause less of an upset. Hopefully once your hormone levels are better your guts will be less sensitive.
I dont know how you go about changing surgeries but if its any consolation i saw 4 at my surgery before i found a keeper. She didnt know any more than the rest but she encourages you to learn about your condition and is willing to listen and learn. I leave a week between blood draw and GP appt get my blood results on line and initially always posted here for advice and to find out how GP was likely to react. I would then do some research or copy links responders suggested and take my Ipad to the appt ready to practice the gentle art of GP education/manipulation, I have become extremely good at it😇😇. I also knsusted on face too face appts until I was stable, its always harder for them to he dismissive face to face.
Another handy tip is I listed all the symptoms and gave them a coloured square under each test result - red= bad green=ok yellow=improved, worse, or still not right depending on the previous colour. It worked well as she could easily see improvements or slips as my levels went up and down. It also means I have a good dosage/ result/symptom record if I had to start with a new GP in the future.
Even when she asks the lab wont test FT3, i get a blood draw kit from medichecks for any extras I want and get the nurse to fill the extra vial when she does the NHS TSH test, they have never been awkward about it. My squares genuinely dont stay green til my FT3 is 5.7 or above and she now accepts that without too much fuss but still queries a dose drop as my TSH is usually suppressed at that point, so I just trot out my research showing that If FT3 is in range I am not going to spontaneously have a heart attack or develop brittle bones and my symptom chart for that suggested dose and say no thanks til you can prove the research wrong.
Hope some of that helps, if you manage to get diagnosed and start treatment it is a slow process as unfortunately hormones can only be added by a small amount at a time and you may even feel worse after the first few weeks rather than better (GP often says that just proves you dont need it, numpties, there is a completely different reason!) but we can go through that type of thing with you when you get that far if you want. We are always happy to share experiences, just ask or Im hapoy to answer a PM. Dont forget to post after your appt and let us know how you get on!
magnesium spray sounds like a good back up plan if i can't manage tablets - thanks for the heads up on that i often have strong side effects/reactions to medications and the like, so it's always good to have a topical alternative if I need one. I'm wondering if my sensitive gut might be an increasing sensitivity to wheat. Bit academic since I'll go gluten-free regardless.
There are three other gps at our surgery. But of the others two are much worse than my current regular and the other doctor is very new. One of the 'worse' docs was even criticised at a coroner's inquest about two years ago (when she was at a previous practice) for multiple failures to spot a child's leukaemia. Not sure how she's even still got a license frankly but I'm certainly not going near her.
That stuff about plan of attack with the gp definitely helps. It sounds like a great idea to create spreadsheets and charts - a bit like I used to do for work! Funny how the patients end up project-managing the doctors!
Reminds me of when my late cat got diabetes I ended up knowing much more about feline diabetes than the local vet did - in the end I was telling her what dosage he needed and when I needed to do 24 hour blood curves (which I did at home to reduce stress and get more accurate results). And she just gave me the phone number of the consultant she'd been phoning to get answers to my questions, so she could stop saying "I don't know, but I'll find out and get back to you..".
In a lot of ways a non-obstructive uninformed medic can work out pretty well so long as the patient is willing/able to do the the leg work. But I do worry about what happens when they aren't/can't. It can be a pretty lethal outcome for a lot of conditions I suspect.
Thyroid Stimulating Hormone (TSH) 4.28 is over range and FT4 and FT3 are low in range. In the presence of positive thyroid peroxidase antibodies it would be pragmatic for your GP to prescribe Levothyroxine.
Thyroid peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.
Vitamin D is severely deficient. Your GP should refer to local guidelines or the cks.nice.org.uk/vitamin-d-d... Do NOT accept a prescription for 800iu which is a mainte-nance dose prescribed after vitD is replete >75. My GP prescribed 40,000iu daily x 14 followed by 2,000iu daily x 8 weeks which raised vitD from <10 to 107. Vitamin D should be taken 4 hours away from Levothyroxine.
Thanks Clutter, given all the advice I've been given here I feel a lot more confident about making another appointment with the gp. I still can't work out how on earth my vit d is so low but i guess so long as it gets corrected and isn't a sign of something more sinister i'm happy to let it remain a mystery.
i just really hope i can get some traction on the thyroid side of things - sounds as though that will be more tricky as i don't quite meet the nice guidelines and we all know what sticklers gps' are for the rules! but if not, i guess i will have to think seriously about switching surgeries as this isn't the first time i've had them miss something serious. it'd be a wrench though as it's the surgery my families used for three generations.
That's interesting about the gluten-free diet - i was seriously thinking of trying gluten-free a while back as I've been having digestive issues and wondered if I might have developed an intolerance. Maybe my body was trying to tell me something!
Email dionne.fulcher@thyroiduk.org for a copy of the Pulse article with Dr. Toft's comments if you would like to show it to your GP.
Be prepared though that not all GPs will diagnosed hypothyroidism after the first abnormal TSH result. TSH can be elevated due to a virus or infection so some GPs insist on retesting 2-3 months later when any non-thyroidal illness will be expected to have resolved.
thanks Clutter, i'll email Dionne for a copy. i haven't had any viruses/infections recently (well, not that i've noticed) but would that affect the antibodies as well as the TSH result if I had?
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