Self injecting alternate days but suddenly tired again

[AutoimmuneAnnie]

Hi everyone,

I have been self injecting with Hydroxycobalamin since May this year on alternate days and for a few months I felt really good with the increased energy. However, in the last month or so I have started to feel very tired again, lethargic, muscle aches, headaches, lack of appetite to name a few symptoms. I have been doing some reading and I am wondering if my new symptoms have anything to do with my folate levels not being at an optimal level. In May folate was, 5.1, Normal levels are >4 at my lab. I have been doing some research and have read that for proper absorption of B12, folate needs to be at an optimal level. I believe optimal levels are about 14 or 15?. My ferritin level was just above the normal level too at 23.7, range is 22 - 322. My FBC was in range at 13.3

These blood tests were done in May of this year before I started regular alternate day injections. Could it be that both my ferritin and folate levels have decreased? Again, I have read that B12 calls uses folate and iron to be fully utilised. My question is, should I concentrate of increasing my folate and ferritin levels before digging any deeper into my symptoms and panicking that the hydroxcobalamin doesn't seem to be working any more?

Any commends, advice or guidance appreciated.

[Marz]

Ferritin needs to be higher - around 80/90 is often quoted on the Thyroid Forum where so many of us suffer with Low B12. Low iron could be making you tired - as oxygen adheres to the iron in the red blood cell for transportation around the body. Low iron = low oxygen - simplistically put ! Are you taking a good B complex with the B12 to keep all the B's in balance ? Folate needs to be halfway in the range - although lab ranges do differ....

Low VitD can also contribute to aches - again the result is better nearer the top of the range....

Hope you soon feel better. Someone will be along soon with more knowledge about B12 than me I am still learning....

[AutoimmuneAnnie in reply to Marz]

Thanks Marz,

I am supplementing with iron but don't know if my levels have increased yet.

I was taking a B complex vitamin but my nutritionist warned me off it. I will discuss this with her. Which one do you use?

I supplement with Vit D daily and on my last test it had raised from 25 to 46.1 so definite progress there.

It looks like I need to work on increasing my ferritin and folate to see if that makes a difference. Thank you for your reply and well wishes

[Marz in reply to AutoimmuneAnnie]

I have read that taking iron with VitC can help the absorption. B Complex is good to keep all the B's in balance - just one of B's can be a problem if you take much - think it's B6 - not sure. I take Thorne Research B Complex which contains Methylfolate which is natural and not Folic Acid - which is synthetic.

If your VitD was measure in nmol/L then it is still LOW and you need at least 4000IU's daily - information about dosing according to results below... The measurement is different - ng/L so you have to divide your result by 2.5 - which approximately 18,

grassrootshealth.net

Good Ferritin levels and the others will also help with the thyroid treatment - you will convert better from T4 into T3. Maybe having your thyroid treatment tweaked could also help with the fatigue. do you have any results with ranges ? Maybe I could spot something

[AutoimmuneAnnie in reply to Marz]

Hi Marz,

Thanks for your message.

Yes I do take Vitamin C when I take iron supplements to assist with absorption.

I will speak to my nutritionist about a B Complex supplement. I think she was encouraging me to get most of my daily vitamins and minerals through my diet but this is not always easy to do when leading a busy life.

Yes my Vit D was measured in nmol/L and I know it needs to be higher, I am currently taking Bio D Mulsion Forte for vitamin D daily. One drop equals 2,000 iu's. Perhaps I should take two drops daily.

My thyroid levels were measured in May along with my other results.

They are as follows : -

TSH - 0.03 Range - 0.35 - 5.10

T4 - 12.4 Range - 7.86 14.41

The lab refused to test T3.

I have been experiencing cold feet as well as tiredness, so maybe you are right and my thyroid meds need a slight tweak. I currently take 3 grains of Armour thyroid daily. If anything stands out to you, please do let me know. I find it all very confusing.

Regards,

Annie

[Marz in reply to AutoimmuneAnnie]

I agree it is all very confusing ! I think we all go through moments when we think - what is happening ? Sorry to disagree with your Nutritionist about obtaining nutrients from diet - yes in a perfect world we should. Sadly the soil is mostly depleted and if we are Hypo then we do have problems with low stomach acid which in turn affects good absorption - especially as you also have PA. Not sure how old you are - but stomach acid lowers as we age !

Of course Armour will go some way to suppressing the TSH due to the T3 content and the FT4 will be lowish ! I would certainly push for the FT3 test to be done - as it is the most ACTIVE thyroid hormone and needed in every cell of the body. So if low then there is not enough to go around all the cells and issues appear. You could have the tests done Privately through TUK - should your GP continue to be unhelpful. Albeit I think it is mostly the labs that resist due to costs ! What price health ? I live in Crete so it is simpler when it comes to choosing what is tested !

I am not a medical person just a fellow sufferer I think when your minerals and vitamins are OPTIMAL things will be brighter and you will have less symptoms. Certainly double your D. I introduced T3 only - higher B12 - VitD around 4 years ago and have noticed a huge improvement. I also have been having weekly B12 injections for the past 18 months - something that should have been started some 42 years ago when the Terminal Ileum was removed I take 10,000IU's of D as I have Crohns along with the Hashimotos.

[Lilnicki]

If you're self injecting alternate days, you should really be taking folate daily as well. Did your GP not mention this when your folate test came back low ?

[DogInTheDisco in reply to Lilnicki]

Could you recommend any particular brand/strength of folate supplement?

I think I have low levels of stomach acid as I am very uncomfortable and gassy right after eating, and have only just started injecting with b12 - not sure how often I will need to inject yet.

[Lilnicki]

Potassium can also drop with frequent injections. Do you eat potassium rich foods ? Sweet potatoes , tomatoes, avocados, bananas, coconut water/ milk ?

[AutoimmuneAnnie in reply to Lilnicki]

Hi Lilnicki,

Thanks for your reply. No, my GP was not going to treat with anything. I asked for some iron supplementation because I am also hypothyroid and I'm aware that ferritin needs to be higher in the range, she did so reluctantly. She said nothing about folate supplementation, stating it is within the normal range.

Thanks for reminding me about eating potassium rich foods, I will add these to my diet.

[Hypopotamus]

Two things that helped me (in the same situation that you describe). My ferritin level were bottom of the range, and an iron supplement definitely helped. I am also hypothyroid, and for some reason found that reducing the amount of NDT that I am taking also helped a lot.

[AutoimmuneAnnie in reply to Hypopotamus]

Hi Hypopotamus,

Thanks for your reply. I am also hypothyroid and take NDT.

I had not considered reducing my NDT and would be a little nervous to but you say it has helped you? Interesting, I wonder how that could be?

Glad to hear you have found things that help

[Hypopotamus in reply to AutoimmuneAnnie]

I know that it sounds odd, and it may not be the case with all of us. But it is worth a try. I came down from two grains to just half a grain of Thiroid, although now the colder weather is coming in, I feel that I may need to go up slightly. Always make changes slowly, and take careful note of how you feel, and your symptoms. Remember, you can always go back up again if you don't feel well, and being under medicated for a day or so is not going to hurt you.

[ollie7horse]

Hi Autoimmuneannie,

How are we supposed to k ow? It's a guessing game. I feel well for a time then relapse quite often it never lasts too long. Like you I look at last blood test see if anything on low side, usuallt vit d, iron or folic acid and supplement. If still feeling iĺl pop to doctor. I've relapsed quit a lot this yr viruses, tooth Infection, I've been in bed to 2 days now think infe tion back after extraction 😕 It's an up & down disease even after injections. Wish you well

OLLIE

[AutoimmuneAnnie in reply to ollie7horse]

Hi Ollie,

I am so sorry to hear that you have been suffering this year and a tooth infection sounds horrid, I hope you get better soon and stay well.

I think you're right. It is a disease after all, our bodies are compromised because of this condition and even though we attempt to give our bodies what they need there are going to be times when we are getting the balance of medication, supplements and diet wrong. I am guilty of panicking a bit when I get tired because I always think something is wrong with my pernicious anaemia or thyroid condition and I think, oh no here we go again, it's going to take me ages to work it out. But I have to be realistic, it is an illness and sometimes I am going to feel tired. Thank you for keeping it real.

Get well soon

[Sleepybunny]

"My FBC was in range at 13.3"

Which part of your FBC was 13.3?

Do you know your current B12 level?

What were your MCV and MCH levels on the FBC (Full Blood Count)? High MCV and high MCH can indicate the possibility of macrocytosis.

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

Your iron appears to be towards the bottom of the range. Low iron can make your red blood cells smaller. Low B12 and/or low folate makes red blood cells larger. A folate level of 5.1 is not far from the cut off point for deficiency. If you have both conditions then your MCV and MCH can appear "normal"and a GP may miss problems.

Have you discussed supplementing iron and folate with your GP? Iron supplementation can cause problems if too much is taken.

[AutoimmuneAnnie in reply to Sleepybunny]

Hi Sleepbunny,

Thanks for your reply. I think it was the haemoglobin that was 13.3. I had my B12 tested at the same time and that 743 but since then I have been injecting regularly so presumably it will be very high now.

When my GP gave me these results in May she initially said 'no action required'. However, I have Hypothyroidism as well and I know that it is important for Ferritin to be higher in the range as well as other vitamins so I asked her if I could supplement with iron. She agreed reluctantly and gave me one months worth of iron supplementation. I continue to take spatone sachets when I remember.

It would be interesting to know what my folate and iron levels are currently.

My GP is not supportive of me self injecting B12 and doesn't know that I do so, so regularly. It just feels like a big hassle to see her, so I prefer to do things on my own.

I think I am going to get my folate and ferritin tested privately and supplement with folate and iron to see if that makes a difference.

Thanks again for replying.

[Lizreds1]

Buy some methylfolate, try it, if it's that you will feel better straight away, don't go taking lots if different things together, rule out one at a time, sounds to me like you have used up your folate! Holland and Barrett do a methylfolate by solgar, highly reccomend it