Hello, would appreciate some advice from people with experience of these things...
Been feeling bad for ages now - fatigue (even after lots of sleep), no energy or enthusiasm for exercise, cramps, cold a lot, dry skin, irritable, mood swings...
Had blood tests and everything in range but I'm aware some things a bit low or high...
Ferritin was 14 (range 9-90)
B12 was 450 (range 150-900)
folate was 19 (high end of range is 18)
Asked doctor about the ferritin and she said this was normal not low and 14 is average for an adult menstruating female so that couldn't be causing me problems.
Think thyroid was ok:
TSH: 2.6
Free T4: 12.4
Dr won't test for T3.
Any advice would be appreciated loads. Sorry for any repetition, new to this site so finding my feet - already found so much useful info!
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littlepotofjelly
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people vary a lor in how they respond to b12 and protocols on when treatment should start do vary from country to country so couldn't rule that out from the results above
This alert on the dangers of using B12 serum numbers without looking at clinical picture may help - recommends follow up with MMA and homocystine tests - which can help with clarifying whether the B12 in your blood is actually getting to the cell level.
If you haven't been supplementing folate then the high levels can be indicative of a methylation problem - which would affect your ability to process folate. As you need folate to process and use B12 then it could be another factor - its a genetic problem that goes by the name MTHFR. To know what is the most appropriate method of treatment - if this is a factor - you would need to know which genetic variants are involved. This is a reasonable introduction to MTHFR. Generally the solution is using methylated forms of folate and B12 but there is one combination where this can cause problems
Thank you for this reply and the links - on a train just now but will have a proper look at them later. It's so helpful having new information - feels like a big jigsaw puzzle that is being slowly pieced together!
If you start the injection for b12 will the reading on a MMA test and honocystine be sewed after to check things? Is it important to have this done before you start the jabs?
MMA and homocysteine are waste products that build up and aren't recycled back into useful building blocks in some key processes in the body. Both of these processes need B12 to be available at the cell level. It is possible to have high serum B12 levels and still be deficient at the cell level so these tests can help clarify if there is a deficiency at the cell level. However, B12 isn't the only thing used in these processes so these aren't specific tests for B12.
So, the answer to your question the supplementation may or may not affect the results of these tests - it depends on whether the supplementation has resolved the deficiency at the cell level. Sometimes it doesn't - so it's not a good guide to what happened before the supplementation started - but it can clarify if something is still going on.
Your symptoms "fatigue (even after lots of sleep), no energy or enthusiasm for exercise, cramps, cold a lot, dry skin, irritable, mood swings..." do sound similar to those of B12 deficiency and your test result at 450 is not that high.
I am not a medically qualified person but am interested to know a little about your lifestyle in case your symptoms are B12 related and not for some other condition,
Are you vegan or vegetarian?
Have you had gastric surgery?
Have you had dental treatment or any surgery with nitrous oxide used?
Are you diabetic and on Metformin?
Are you on antacids or Proton Pump Inhibitors?
Do you take strenuous exercise or take part in extreme sports?
The only natural way to obtain B12 via food is to eat red meats, fish, poultry, eggs and dairy products etc added to which you need to get folate (B9) via leafy green vegetables as the two vitamins work hand in hand.
With a little more information about yourself I'm sure there are others on here who will be able to give you good advice.
Hello, my answer is no to all of those above questions. I actually eat a reasonable amount of animal products - meat, fish, eggs, dairy, and I also eat green leafy veg (spinach) most days...
Does that information help?
Thank you for your advice and sharing your knowledge!
Well my "knowledge" is (like me) pretty well exhausted - just one thing I forgot to mention was the contraceptive pill - also known to affect B12 and folate levels
Lots of good advice already. I would just like to add that it would appear as if your thyroid is beginning to struggle. The production of T4 from the thyroid is very LOW in the range. ( Based on many ranges I have seen on Thyroid UK ) This would then translate into a very LOW FT3. T3 is the most active thyroid hormone and is needed in every cell of your body. Good B12 and Ferritin levels are required for this conversion to take place.
Thyroid anti-bodies were not tested either - and auto-immune thyroid - Hashimotos - is the most common thyroid condition throughout the world. Anti-TPO and Anti-|Tg also need to be tested. If you do not have an enlightened or supportive GP then you have the tests done privately through Thyroid UK with Blue Horizon.
Thank you. The range for free T4 on my test was 10-24, and GP said 12.4 was totally normal...? What should the free T4 be ideally?
Thanks for the link to the thyroid UK site - so much useful info. My GP has said they won't test any further with thyroid stuff as the TSH and free T4 were in range (I did ask about T3) so I guess I'd need to go privately. Good can order via post though, might be worth getting my active B12 done at same time.
If the results from these private tests come back to reveal something then have people found their GP pays attention to them? I'm worried they'll shrug them off.
Yes your T4 is very close to the bottom of the range - suggesting your thyroid is not producing well. This could be the cause of some of your symptoms. It needs to be nearer the top of the range - and around 20 would be optimal. This gives you a better chance of having a decent T3 level too. T4 is a storage hormone and does diddly squat in the body - it has to convert into T3 when levels of Ferritin are good - along with B12 - Folate - Iron - VitD. T3 is the ACTIVE hormone and every cell in the body has a receptor for T3 - so when low it is like trying to spread a teaspoon of butter on a loaf of bread
Docs are trained to look at computer screens and the ranges - and declare you normal when they mean in range. However it is where you are in range that is important as you can now see from the link I posted above. Normal is an opinion and not a result. Before blood testing became the norm - Docs were trained to look at the patient - examine them and most importantly listen to them. I once read that if you listen to a patient long enough they will tell you what is wrong with them .... I think it was Chris Steels talking about his mentors at Medical School !
If your Private results reveal a problem and your GP ignores it then you can take things into your own hands and self treat. At least you will know what is happening. Many of the labs are used by the NHS too. Many people here do that and also on the Thyroid UK Forum. I live in Crete and I too self treat my thyroid and B12.
I am not a medic - just a Hashimotos sufferer with a B12 issue. You can click onto my name and read my journey to wellness
Hope you soon find answers and receive the treatment you deserve ....
Thank you for all this info and explaining about the difference between T4 and T3. Interesting that the GP is so reluctant to test for T3!
So the additional tests I'd need to get are the Free T3 and the thyroid antibody ones? And then active B12?
Thanks again. Had a read of your story - interestingly a fibro/chronic fatigue diagnosis is on the table for me too and I just feel like they don't quite get to the root of what is going on! Glad you've found a path to wellness.
Blue Horizon seem to do packages of tests. Maybe contact them for specific individual testing.
Yes the Active B12 test is more accurate than the routine serum test done on the NHS. That is because they test only the B12 in the blood that can be transported to the cells where it is needed. The Active B12 seems more reliable than the other one - but both have a degree of unpredictability - according to pieces I have read. At least it will be a guide. At the moment your B12 does not seem as low as some I have read about. Anything under 500 can present with neurological symptoms ...
On the thyroid forum they do discuss Ferritin as needing a result of halfway in the range for things to work well. So you have a little way to go ... it could explain the fatigue.
Hope you can soon piece things together and feel stronger.
I see Blue Horizon do tests for just Free T3. Could I get this and then compare it with the TSH and T4 tests from Dr. or would I need to pay them to run a full set of thyroid tests for the results to be comparable? Quite a big difference in price.
Also, if my free T3 is low - is medication the only solution to sort this or can I do things naturally to help get my thryoid evened out? I'm assuming the Dr won't prescribe just based on it looking like the thyroid is struggling, they'll want to wait until it's well out of range.
I think it is advisable to have all the tests for the thyroid in one draw of blood. If the FT3 is low in range - which I am thinking it will be as the FT4 is at the bottom of the range - then it just means the thyroid is not working well. I would also have the anti-bodies checked too to rule out Hashimotos. If you are negative for anti-bodies - Anti-TPO and Anti-Tg then it would be advisable to read up on Central hypothyroidism rather than Primary. It is more common than Docs think and often overlooked. This is because the TSH - FT4 and the FT3 are low in the range. The Pituitary should respond to low levels of T3 circulating and pump out some more TSH to give the thyroid a nudge
You could pop over to the Thyrod UK forum and pose your question - where others will have good advice.
Raising the Ferritin may help initially as good levels are required to convert T4 into the active hormone T3.
I am not a medic - just a Hashimotos Girl with a B12 issues.
Yes it does. Our TSH drops throughout the day, and after we've eaten. So the best advice for blood testing is as early in the morning as possible, and nothing but water from the night before. I usually take some water and a banana with me to the blood test centre, so I'm not too wobbly for the journey home.
They will be more inclined to treat a high reading of TSH.
I'm not certain there would be a huge difference in two hours. I've always been told to go as early as possible. The main thing would be to go for repeat tests at the same time, so you can see if things are improving or not. I usually go at 9.00am. What isn't good is to have one test in the morning and the next one in the afternoon.
Have you ever had a test for Coeliac disease. I have read that Coeliac disease can lead to deficiencies in some nutrients including b12 because it can affect the gut. It is possible to have Coeliac disease eevn if Coeliac blood test is negative. See Links.
Wow, thanks for all this info - I will have a read through it all. Did you find your GPs receptive to being handed information? Did you find out if it was a b12 deficiency for you? And have you supplemented this or been given injections?
I got blood tests done for coeliac in 2012 when I started feeling poorly. They came back negative but at the time I was barely eating anything as I felt so unwell so Dr said that could have skewed result. I cut out gluten at that point as the doctor said it was worth a shot and I felt so much better almost instantly - I've now had no gluten for 3 years other than by accident which always makes me really unwell, so I definitely have an intolerance to gluten but never confirmed it to be coeliac.
Doctor said after these recent blood tests that my ferritin being 14 and B12 being 450 meant that I was absorbing fine...?
I know what you mean about struggling for a diagnosis - it's hard work navigating GPs sometimes!
My current GPs are reasonably receptive. I had some bad experiences with GPs before and got to the point that I wasn't bothered about risking upsetting GPs.
I have been ill for well over 10 years and am highly symptomatic for B12 deficiency but couldn't get a diagnosis due to most blood results being "normal" range and felt forced into self treating which improved some symptoms. The NHS has just started to consider finally that B12 deficiency might be part of my problems. I feel so wistful about what might have been if I had had treatment sooner.
I usually take a copy of the "BCSH Cobalamin and Folate guidelines" with me although may take a copy of Fbirder's summary of documents in future (search for Fbirder's posts for a link to summary) because I get fed up with the lack of knowledge about B12.
In past I have written letters prior to appts because I sometimes struggle to get the words out.
Hi, your Ferritin levels may be in the 'normal' range, but not very high, how does this result compare to earlier tests ? Ferritin is stored iron, if you have pernicious anaemia, you will have been drawing on your stored iron, and the levels will be going down. The other answers to you post are very good. I suggest if not done already, do what I did, find a note book and record every symptom as it occurs, and with the names of anyone who witnesses any symptom. I gave a letter to each symptom first, (be specific and list every symptom, I had A - H), and two lines for each day and carried it around with me. Take it with you to the doctor. Before going to your doctor, select the 4 or 5 which occur most often, but tell your doctor first a list of all of your symptoms, and then tell him/her about the top 4 or5 in detail. This worked well with my doctor, after diagnosis, but could equally work for you. I am now having B12 injections more regularly. Also, the B12 test result may not be a true picture of your B12 at a cellular level. Also, I had very low ferritin and folate levels, so even when my HB levels were improving, my energy levels would suddenly drop during the day. The specialist arranged for me to have an iron infusion, (or 'Ferinject'). Not bad at all, took about 4 weeks to make a difference, but then a big difference in energy levels. Good luck, hope all works out for you.
I've never had it test before so I don't know how it compares. I don't seem to be anaemic though (in terms of low hemoglobin etc.) I thought the ferritin levels were low too but the doctor seemed to think there was no way that low ferritin could be the cause of anything.
Hi again, I also have a thyroid problem, Hashimoto's, and have taken 200mg thyroxine daily, for many years. My thyroid levels are always high, but I am loath to reduce my dosage especially since I'm not exhibiting any of the symptoms of 'over medication.' Have you always been well in the past on the level of thyroxine you are taking? Have the results for previous thyroid tests been very similar to the result for the latest test? If this result is lower than previous tests, even though it is in the 'normal' range, you might possibly need a higher dose. Also, referring to my previous answer, I have PA, and am finally getting to grips with the correct B12 dosage for that. It's difficult dealing with two illnesses at once, best of luck and hope you'll be better soon.
I'm not on any thyroid meds. I've not yet been diagnosed with any kind of thyroid issue. Thank you though Hope you get there with the right dosages etc. and start to feel well again soon.
Your ferritin looks very low to me. Not doing anything is similar to your car making funny noises and you ignore them until something in the drive shaft breaks and you're faced with a huge bill instead of a small one for fixing the initial funny noise.
I can only speak for myself, but when my ferritin is below approximately 28 I already feel miserable. When I'm just walking, and especially up the one stair case to my flat it feels like I'm on a high mountain with low oxygen saturation, I'm extremely tired and concentration is poor. Well.. try to explain that to a doctor *sigh*
Thanks for the info. What do you take to raise your ferritin levels? I've read lots of the supplements can either be too low a dose to make a difference or cause conatipation. How did you know what amounts to take?
Yea, I found that all iron supplements available in the UK are extremely low in essential iron. I used to live in a different country when it was first discovered and had limited choice on products there, but the one I bought had about 64mg essential iron (300-something iron salt), and with that I at least got my ferritin up to 50 again. But then I slacked, and it dropped down again *sigh* It takes quite a while to get ferritin levels up again, think of at least 6 weeks until you start to feel better, and then longer still to fill up ferritin properly again. Basically with iron I just ignore my GP and buy new pots of iron supplements when I'm in visiting that area on business again. I also stock up on good-quality B12 injectables there. Thus I guess I'm not a big help here.
Iron supplements that you can buy from the supermarket might be low in elemental iron but you can buy iron supplements over the counter (without a prescription) from the pharmacy which are high. Ask for ferrous sulphate, ferrous fumarate or ferrous gluconate. They each have a slightly different amount of elemental iron. For example each 210mg ferrous fumarate tablet contains approximately to 65-70mg of elemental iron.
This page has a table with the amount of elemental iron in each type of iron supplement:
It is just the amount of iron which you can absorb in each tablet - to make it clearer that a '325mg iron tablet' doesn't actually contain 325mg of iron.
It isn't different from what's in multivitamins - just that the amount of iron in multivitamins is much lower. There is usually a maximum of 18mg of elemental iron in a multivitamin as this is the highest RDA.
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