I've been taking a break from the boards because I found that I was obsessing over every little thing and since I knew I wasn't having blood tests till January I took the time to concentrate on work and family.
I've been feeling tired but less than before since having my B12 injections . I still have pins and needles in my hands and feet, I feel frozen most of the time, my tinnitus isn't as bad as it used to be, joints ache on and off. I haven't felt as depressed which is great and even more confirms that the doctor was wrong!
Here are the blood test results from the summer for comparison with the new ones. Any opinions, help or advice would be greatly appreciated.I'm planning on making a doctors appointment but wanted to look at the results first.
Last thing to add is that I had 5 loading doses of B12 in September/October. I took floradix for iron since mid September till early December when I run out. I have bought some more and plan to restart it as I obviously need it! Also been taking vitamin d tablets and multivitamins tablets.
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chihiro
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It looks like you're going hypo chihiro - increased TSH, reduced T4, increased TPOAbs. I don't know why it says borderline, it's over twice the range! Suggestive of Hashimoto's. Can you ask for a referral to an Endo?
That aside your B12, folate, ferritin and vit D are way too low still.
B12 should be much higher than that on injections, mine is over 2000. The B12 injections you have had so far would have been completely wasted because your folate and ferritin are so deficient. Please tell me that the GP has now given you 5mg folic acid and an iron supplement on prescription, based on these latest results? Here is an explanation of the importance of folate and ferritin when on B12 injections:
What strength vit D have you been taking? You need to get that level above 75 at the very least, the Vitamin D Council optimum level is 125. Did you ever have your calcium tested?
I have made an appointment to see the new doctor for Thursday and I am terrified. You know the trouble I had with the previous doctor and I'm just expecting to be told that my tsh and ft4 are in range so there is problem and that we should retest antibodies in 3 months time.
As for the rest I am hoping I will be given folate and iron on prescription this time as they are now below range. Vitamin d I take 25ug. Should I take more? It's the only that seems to be at least reacting to the fact that I am supplementing. I know it's still far too low but it at least shows improvement.
Thanks for the link for b12. Can I ask you about the level you talk about when on injections? How long after the last injection did you get that type of result?
Oh and calcium levels I had those done back in the autumn but it was in range if I remember correctly. Why do you ask about calcium levels, what problems would that cause?
Low vit D / high calcium can be a sign of a parathyroid issue, so it's always worth getting calcium tested before taking vit D.
Malabsorption is way more likely in your case given that all the other things are so low as well, so I agree with Moggie in terms of testing for Coeliac Disease, gastritis, H Pylori etc. from a Gastro. To be honest your vit D supplement is quite a low strength for correcting a deficiency - I think 25ug is equivalent to 1000iu?
Regarding B12, my result was after a loading dose of 6 injections plus 1 to 2 weekly maintenance jabs for about 6 months. I just did the test privately because I was curious. It's actually not relevant, I go by my symptoms (I'm very well on weekly at the moment). I would make the observation that your level didn't actually increase that much after the loading dose, did it? And I can tell you for certain that your low folate and low iron would have prevented you from getting the full benefit. If you see the gastro make sure he includes the gastric antibody tests, anti-intrinsic factor and anti-parietal cells. This may tell you if you have underlying pernicious anaemia.
I can't really advise further on thyroid as I'm not hypo, so I don't know what people do when they have high antibodies but "normal" TSH and T4. All I've picked up on is that you won't be converting very well without good iron and vit D levels etc.
Is there someone you can take to the doctor's with you? Right down a list of the things you want to cover and try and go over all the points. If the new doctor turns out to be as unhelpful as the last, keep calm and insist on a referral.
H x
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I've just seen your edit, your calcium levels are fine. x
Too low vitamin D? The bottle says that I mustn't take more than one a day! See what happens when doctors don't give a toss and just send you away with no information? Grrr ok. So what amount should I be taking in your opinion to make a difference to my levels?
Would more b12 injections be useless for me then if I do have an absorption problem?
Taking hubby with me to doctor and might even ask him to talk for me at the start. I'm incredibly emotional at the moment and keep bursting into tears so if he starts the conversation it might help me keep a clear head. Also planning on going in with notes and questions so if I get stuck I can look at what I have written down. It's just so awful this feeling of having to fight to get answers. I might just be expecting the worst because of my previous doctor being so dismissive.
Sorry went a bit off course there...having a bit of a moan and vent.
If you look at the flow chart you would be: "25-50 +Symptoms - Consider 300,000IU over 6-15 days. Then 800-2000IU/d maintenance."
So if you did it over 15 days that would be 20,000IU per day, or sometimes this is given as a large dose a couple of times a week I think, rather than every day. The dose you're taking at the moment is a maintenance dose once levels have been raised.
Obviously they may have different guidance where you live, but perhaps you can print this and bring along as a starting point. It is definitely true that such high doses need oversight and monitoring from your doctor.
I wouldn't say the B12 would be useless, it's just not going to be as effective without folate and iron. In fact, it might even make you feel worse. You need to address all these things together, rather than one at a time.
Low B12, Low Ferritin, low folates and low VitD - you need to get your GP to refer you to a gastro for tests as with a set of results like that you might be looking at gut issues.
Have you got thyroid troubles and are you taking levo as you didn't say? You say you are taking VitD and iron, are these on a script or are you buying them because if you are buying them then I would say that this is not the way to go. You need your GP to give you a script for both iron and VitD and for him/her to keep a close eye on you and to re-test your levels on a rgular basis.
I would certainly push for a gastro referral as you have too many vitamin that are low which means you have an absorptin issues, which equals a gut issue. Have you ever been tested for coeliac?
Hi Moggie, thanks for your input. Gut issues you say? Oh dear I don't like the sound of that.
I'm not on meds for thyroid, still trying to get a diagnosis of some sort. Have had a lot of hypo symptoms with occasional swinging to hyper symptoms which might now be explained by the climbing antibodies?
Doctor wouldn't prescribe iron etc because it was in range, I was right at the bottom but she essentially told me that the NHS wouldn't be paying for that and sent me off with no information on amounts to take to just go and buy supplements. After having my second child six years agoI was very anemic and as the iron they had given me made me even more constipated ( I suffer with it anyway) I decided to try floradix which brought my levels back up. I went for it again this time, took for a while,run out a few weeks ago and when I bought it thought it was best to wait till after getting tested to take it again as I had read that taking iron before testing could affect results.
If your antibodies are climbing then its more than possible that you have an auto immune illness and gut issues are very common, if fact a lot of people say that the gut causes the auto immune illness. I am talking coeliac here (gluten intolerance) hence why I said to get a referral to a gastro who can then test you for this.
Your right about waiting to start your new batch of iron supplements until after your test.
Ask your GP outright why your body seems unable to absorb ANY of the vitamins it needs and see what he/she says.
Here is a small exert from a very good link regarding gut issues.
First, there can be a loss of nutrient absorption. Your small intestine is lined with tiny, fingerlike projections called “villi”, which stick out from the wall of the intestine and increase the surface area for absorption by up to 1000 times (which means the absorptive area of your small intestine can be roughly the size of an entire basketball court!). The presence of these villi allows you to efficiently absorb significant quantities of nutrients from your food.
However, any substance like gliadin that irritates the lining of the small intestine can destroy the villi and significantly reduce the total area available for absorption. This not only affects your ability to absorb vital nutrients from the food that you’re eating to support your training and racing, but also results in indigestion as less food is absorbed in your intestine. Typically, this manifests in gut bloating, feelings of tiredness, a hyperactive bowel, and very sizeable or uncomfortable bathroom stops – especially during exercise.
And here is the link in case you want to read more.
Just because you are not coeliac does not mean that are not gluten intolerant and unfortunately the only way to find out if gluten is causing you a problem is to remove it from your diet to see if you feel any better.
I have just had a gut biopsy to see if it can pin point the cause of why all my vitamins were low and they have also done a more thorough test for coeliac.
How long have you had problems with your vitamins?When do you get the results for that? I presume this was a last resort...did you have other tests before this? What kind of things should I expect if I do get referred?
My endo referred me after he did a very thorough set of blood tests and realised that they were nearly all low (he couldn't believe his luck when I said that I did not supplement. Not supplementing gives the medics an accurate picture and they can then treat accordingly) so he ask my GP to send me to a gastro.
She then put a camera down my throat and found a hiatus hernia and gut inflammation (could be down to gluten) so am now gearing up to go gluten free.
Don't know how long I have had low vitamins but what I do know is that I was asking my GP for over two years to test them but she always refused. I went in and asked her if she would take notice of a private VitD test so she relented and did one only for the levels to come back at 12.5. I was immediately put on high powered (50,000iu) supplements for two weeks to correct this. They has since dropped again and another course was given and I think this, along with other low vitamins, prompted my endo to investigate further via the gastro. Having low iron was enough for the gastro to order the camera which is not a nice experience but worth it.
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