New here and would appreciate some advice

[flibertygibert]

I would be very grateful for some advice from any of you knowledgeable people on this forum.

I have been experiencing extreme fatigue, weakness, palpitations etc. since 2014. Having read a lot of posts on this site I know theses are some of the symptoms of b12 deficiency. I did go to the doctor and they did blood tests but the only thing that showed up was raised ferritin. To make a long boring story short, I then got breast cancer but was very lucky to have found it early so only needed radiotherapy and not chemo. Doctors then thought the fatigue could be as a result of the radiotherapy.

Because the ferritin levels did not go down, I eventually got an appointment with a haematologist and I now have blood letting every 3 months to keep my iron levels under 50% saturation. I was sent for an ultrasound scan to check that I did not have damage to my liver from the iron overload and was found to have endometrial cancer. Apparently this was at an early stage and after a hysterectomy last summer I did not have to have any further treatment.

I was hopeful that my symptoms would then disappear as they may have been caused by the cancer but sadly all the symptoms have persisted. My haematologist said that it is not due to iron overload as I do not have it severely enough. (Apparently I only have one faulty gene that would predispose me to hemochromatosis).

In desperation I paid to see a private endocrinologist as I thought it could be something to do with thyroid as I had half my thyroid gland removed 20 years ago but have not been on thyroxine as my levels were ok. He could not find anything untoward.

I watched a programme recently where a young man was given huge doses of b12 and his fatigue disappeared, so I asked my doctor to test my b12 levels, he agreed and also suggested testing folate levels. The b12 came back as normal - 325 ng/L (197 - 771) but the folate was 3.1 (3.90 - 20.00) so he has given me 5mg folic acid to take daily for 4 months.

I have looked up the symptoms of folate deficiency and they seem to be similar to those of b12 deficiency. I have only been taking the folic acid for 2 weeks but wondered if anyone knew how long it took for symptoms to improve and also do you think I would benefit from taking an over the counter b12 supplement or could that interfere with the folic acid.

I would be really grateful for any opinions. I've felt so awful for 3 years now and like so many other people on this forum was even offered anti-depressants by the doctor, although I assured her I was not depressed just fed up to the back teeth of feeling dreadful.

Thank you so much if you are still reading this very long post and I look forward to hearing from you.

[Polina44]

Hi,

No advice as just posted a similar post myself and we have similar blood results for B12 and folate . Let's hope we get some great replies. I have in the past but like you have been side tracked by other health issues.

Good luck and best wishes x

[flibertygibert in reply to Polina44]

Thank you. I wish you all the best too. x

[KimberinUS]

Just opinion but... i wouldn't take a b12 supplement yet. Once you have folate to go with the b12 that is available in your body, your b12 could drop to the deficient range, which your dr. Will need to see "in black and white" before he/she will test for infrinsic factor antibidies/homocystein/mma.

I wouldnt wait 4 months either!!! Call to and see if you can be retested to see if the folate treatment is working, along with b12 testing again, after one month of treatment. If they refuse, i would pay to have those tests done privately.

I know this waiting for b12 will leave you with symptoms, which are aweful, but 2 more weeks compared to forever, if you supplement on your own, would make me bite the bullet for 2 more weeks. I would get my appointment scheduled now, either thru dr. Or privately so you know that in 2 weeks you will be tested.

I am not medically trained but i know that from reading posts on here, from folks that self supplimented, doctors do not take your self supplimentation into consideration. They JUST treat black and white results.

Others may have other opinions, and you, of course, know your own body best.

Sorry you are feeling so unwell. Good luck.

[flibertygibert]

Thank you so much for your quick reply.

I will take your advice and not take any b12 supplements. Is it likely then that my b12 will drop as I am taking folic acid? I didn't know that was a possibility.

kind regards x

[Gambit62 Administrator]

its unlikely that B12 is a problem - your B12 result is actually well into the normal range and although some people can experience problems at this level its getting into the very unlikely range where as folate deficiency is much more likely to be the cause.

The symptoms of B12 and folate deficiency are very similar because the two are used together in a lot of processes in the body.

How long it takes to recover really depends on what is causing the symptoms - if it is anaemia (macrocytic anaemia in which red blood cells are larger and rounder than normal) that is going to take a couple of months at least to reverse - red blood cells are only replaced with healthy new cellls as the old ones die and the average life of a red blood cell is 120 days (roughly 4 months).

One of the chemotherapy drugs used to treat cancers can interfere with folate absorption/metaboloisation so if you had any chemotherapy that may have precipitated the folate deficiency.

If the symptoms came on quite quickly then that would also point to folate rather than B12 deficiency.

[flibertygibert in reply to Gambit62]

I was lucky enough not to have chemo but thank you that is very helpful. Hopefully I'll feel better after the 4 month course of folic acid.

Many thanks for sharing your knowledge.

[Auntyp62]

Oh my goodness......I had been complaining about chronic exhaustion for the past few years and have been on b12 injections 8 weekly for 2 years. They made a difference initially but after 6 months I was back to heavy sleeping.....in January this years I saw an endo who actually listened and believed I had a problem ( gp told me to accept it as all was normal and it was just me) sent me for loads of extra test and to sleep clinic which diagnosed hypersomnia ( excessive sleep of unknown cause)........then I saw the programme you mentioned. The man on program had high homocysteine and used high strength b12, b9, b6, b2 to eliminate it. I had had a gene test done 2 years ago and the main issue on it was I was predispositioned to high homocysteine.....alarm bells rang.......after discussing it with my endocrinologist who admitted he knew nothing about it but having a blood test would not show true results as I have b12 jab but said do it you have nothing to lose and maybe the 8 weekly b12 is not enough on its own to eliminate homocysteine. On day 5 of my new regime I stayed awake all day... now on day 28 and feel a new person.

[flibertygibert in reply to Auntyp62]

Thank you for your reply.

That's great that you are now feeling so much better. Can you tell me exactly what you are taking now and how often that has shown such a marked improvement.

Thank you

[Auntyp62 in reply to flibertygibert]

I looked up what was in the vitamins and what strength they were on the tv programme and bought individually...1000 b12..800 b9...50b6...100b2............on day 21 I was getting concerned that I was taking too much and cut down to taking every other day but after missing 2 doses was back to energy crashing and excessive sleeping......I think if you click on my name you can see my previous posts and see if we are alike

Must add I will not be having the 8 weekly b12 injections. And I notice that although your test at 325 is not below nhs considered levels mine were 254 and doctor gave me them as a trial that in the beginning helped. The new general thoughts in a lot of countries is that it needs to be looked into if it is below 500 as it could be a sign of high homocysteine which new science is finding causes all sorts of illnesses

[flibertygibert]

It's so good that you found out exactly what that young man was taking. I did ask the GP to test my homocysteine level but he said it was not a standard test. (I expect he meant it was too expensive!). I have looked at your previous posts and we definitely have similar symptoms so I think I will do what you are doing.

Thank you for your help and I hope your health continues to improve.

Keep well x

[Marz]

I am wondering if you had sight of the Thyroid test results. Often they only test the TSH - and sometimes the T4 - but not the full range of tests that will tell the full story. Having half a thyroid must have an effect and may mean you have low T3 - the most active thyroid hormone and needed in every cell of your body. So if low then things start to go wrong.

When Docs say fine they mean in range - but it is where you are in the range that is key. I have Hashimotos and a B12 issue and have learnt so much from Thyroid UK here on HU - as well as this forum .....

Low B12 and other vitals are common with low thyroid too 😊

[flibertygibert]

Thank you for your reply.

I didn't actually see the results but the reason I went to the private endocrinologist was to get the T3 tested as I had read an article about a lady with similar symptoms and her problem was solved when she had a test for T3, which turned out to be abnormal. My doctor said that an NHS test would not show T3 levels so I went privately for the test. I was told all my levels were in the normal range.

My last NHS blood test in April for TSH level was at 3.73 mIU/L (0.27 - 4.20 mIU/L). I've no idea if that is good or bad but I can see it is within the accepted NHS level.