B12 or Hypothyroidism, or something else?

[patez]

A lot of you will already know me on here.

About a year ago, I sought advice, after the local doctor in Oman diagnosed me with severe B12 deficiency, but then only gave me some B Complex tablets to take, which did no good at all!

I then found some B12 injections available, and started SI.

I felt great, on top of the world, with all my symptoms clearing up pretty quickly, for about 1 year.

BUT!

For the past 6 months, I have been struggling badly! I have been SI daily with B12, and once weekly with a B complex injection, but I feel terrible!

My symptoms are, tiredness, fatigue, bad memory and difficulty in concentrating, mood swings, chest pains, short of breath (I was actually admitted into hospital 2 weeks ago with severe chest pains and feeling very unwell, but the doc did an ECG only and said "panic attack", and packed me off home with some anti acid!).

Very recently, I have been suffering with my fingertips going "soft" (indented when pressed) and what seemed to be a type of fungus on the fingertips, base of the fingers, and palms? That may be totally unrelated though? I have just started taking L-Arginine and Pycnogenol to treat ED, and have just discovered that L-Argenine can cause that to happen, due to water retention (and that is exactly what I have, "pitting Oedema"?). I have just today stopped taking the L-Argenine

Anyway! I digress!

My B12 treatment has stopped working, so I have been looking into the possibility of Hypothyroidism?

I eat like a mouse, I think?, but I cannot control my weight! I seem to gain weight very easily! My diet? A small bowl of Fitness fruits cereal in the morning, a cheese sandwich for lunch, and a small evening meal of either roast chicken (no veg), or fish and peas, with an apple or 2 later. I "maintain" weight, but on the odd occasion when I "splurge" on a few bags of crisps, I gain 1 kg!

I get very down and depressed!

I read a lot of posts from people who have access to excellent medical facilities, but who also seem to struggle?

I do not have that sort of access to medical facilities! The local doctor even refused to test me for B12, telling me that it was too expensive! He then followed that up with "B12 injections are not available here anyway!" He then went on to say that I could not have a B12 deficiency, because I am British! Umm! LOL!

Anyway! I am searching for HELP!

I feel dreadful, and going to work is a real struggle! I have to find a seat to sit on, or a table to lean against, pretending that I am fine, when I have to talk to people, but I just want to keel over!

Oh! And the tinnitus! That is very annoying!

Can anyone "pick the bones" out of this post and give me some advice?

I am at the end of my tether, and just want it all to "go away"!

Am I suicidal? Yes! But I do not have the courage to do that, so I have to suffer!

And I am suffering!

Just as an aside? Can taking too much B12 cause problems? In desperation, I have been taking a daily B12 only injection, and a B complex injection, but I am getting worse!

HELP!

[Gambit62 Administrator]

too much B12 can cause problems but would have done so well before this.

If symptoms came on suddenly it may be folate deficiency so would suggest upping the amount of green leafy vegetables in your diet ... or supplementing with some folic acid. Of course that is unlikely if the B complex contains folate.

Assuming vit D isn't an issue though if you are spending all your time inside because of heat it could be.

One thing that can cause underactive thyroid is lack of iodine in diet or losing large amounts of iodine that you aren't managing to replace so could be worth exploring that - though get medical advice, as ever, before trying to supplement iodine as too much can cause problems.

Unfortunately there are a lot of things that can cause the same or similar symptoms to B12 deficiency - including thyroid and diabetes.

[patez in reply to Gambit62]

Hi.

Thanks for the info, and your support.

I was under the impression, from previous posts, that it is not possible to have too much B12? Some people have claimed that they have to take 5 mg daily, and I have only just gone from 1 mg daily to 2 mg daily.

I take 2 x 400 mcg folic acid daily.

I doubt if it is Vit D? I get more than enough sun!

I will stop taking any B12 for now, and monitor myself, although the last time I tried to stop, I only lasted a few days before the tingling fingers and chest pains came back!.

I do go on holiday in 5 weeks time, to Thailand, where I can see a real doctor, and get some tests done! Costs me though!

For now I just have to suffer!

Thanks again for your moral support.

[Gambit62 Administrator in reply to patez]

the problem is that high levels of B12 in serum can kick of a reaction in some people that stops the B12 getting from blood to cells - but this would have been kicked off by the first injection .... and the most effective treatment seems to be keeping levels really high.

Don't stop the B12

[Benattan]

It appears that you have anxiety and panic attack disorders caused by vitamin B complex. Try discontinue B complex and see whether your problems stop.

[patez]

Keeping you all updated.

I had a "funny turn" at work this morning (suddenly felt completely drained and nearly keeled over with a very dizzy spell). I went to the doc. Luckily, it was the good doctor. He did a very thorough physical, had an ECG and blood/sugar levels and blood pressure checked. Only thing was high blood pressure (161/115). He has ordered a full blood test, and tests for thyroidism (TSH), and IF tests for PA. He has given me some medication for the blood pressure.

That is great news! I may finally get to the bottom of my health problems! At least this doctor di not throw me out of the door with a bottle of antacid like the other one did a few weeks ago!

I will update you when I get the blood test results next week.

[Ryaan]

What form of B12 are you injecting ?

Methyl/Cyanno or Hydroxo ?

Is your Iron levels ok ?

[patez in reply to Ryaan]

Hi.

I have been using Cyano, both B12 only daily, and a B Complex weekly.

I have no idea what my iron levels are!

The doctors here in Oman usually never do any tests and only treat the symptoms!

I have just received some Hyroxo B12, in the post, but the doc here wants me to stop taking B12!

He wanted to test my B12, but forgot to place the request when they sent my blood sample away! I mentioned that the B12 result would have been useless anyway, because I have been SI daily for months! It will no doubt be sky high! He then told me to stop taking any B12, and to come back and have the B12 tested when I "crash" next time? As if? I am not willing to go through that again, just so he can tell me that I need to take B12? What is the point? I asked him to do an IF antibody test, which would not matter if I was taking B12 or not, but he told me that they cannot do that test in Oman!

At this moment in time, the doctor is treating me for Ménière's disease (I thought he had ordered blood pressure medication, but just found out that he had ordered Betahistine), while they wait for the blood test results. If I was in the UK, I would be banned from driving until the doctor cleared me! Why give me Betahistine? I was feeling very dizzy, because my blood pressure was high!

Anyway, I will maybe know more on Sunday, when my full blood test results come back.

[Ryaan in reply to patez]

Ur you want to carry on SI, I think you should switch to Hydroxocobalamin which is what you said you received.

I think you should try and cut down from everyday to every other day (3 times a week).

Record what symptoms you have on Hydroxo at 3 times a week. If you can bear the symptoms at 3 times a week on Hydroxo, I think that's a good start.

I think you should be able to do it

Where are you buying the injections from ?

The B complex can be taken orally.

I think you're body is getting too dependant on B12 injections, changing and cutting down should help.

It's good to find out what your folate, Vit D and Iron levels are in your blood just to make sure.

[patez in reply to Ryaan]

Thanks for the advice.

Yes, that is my plan! As I understand it, Hyroxo is slow release?

The B Complex, taken orally, will not have any effect at, if I actually have PA! Or maybe I am getting confused about IF and absorption? Does PA actually stop the absorption of B12 only? The B1 and B6 would still be absorbed if taken orally?

Hopefully the blood test results will show up what my other levels are!

I do not know if you know my background, but I was diagnosed with severe B12 deficiency, with peripheral neuropathy, 12 months ago. B12 injections were not available through the local doc, and he gave me B complex tablets, which did absolutely nothing!

I got advice on here to SI, and I ordered the 1st thing I could find online, but then found that B complex injections were available from the local pharmacy. I started SI and was on top of the world within a few months! The chest and back pains completely disappeared. I could breath a lot more easily. I had so much more strength. The dizziness and "brain fog" went away. I had been Si daily with B complex for about 2 months, but I was concerned about the possible overdose of B6 (daily B complex injections are "safe" for a period of 6 months). I then found some B12 only available locally, so I started using that. I was still fine. I did try to cut down on the B12 injections and supplement in between with Methyl sublingual, but I found that I was getting a sore mouth, chapped lips and very dry mouth. I stopped taking those and went back to daily SI with B12 only. I was fine for 6 months. Then my Mother passed away in January this year. Since then, my symptoms nearly all came back. The B12 seemed to have suddenly "stopped" working? I have never seen any posts, nor heard of anything to suggest that you can take too much B12, or become "dependant"? As Gambit62 has stated, "too much B12 can cause problems but would have done so well before this". So? Why has the B12 stopped working, 6 months after starting to take it?

Getting the Hyroxo is a desperation measure! It is not as if the B Complex, or B12, had never worked. It fixed me up completely 6 months ago! But I am willing to give anything a go, to get back to where I was 6 months ago!

That is why I suspect that something else is now going on, something that B12 is not addressing?

As I have seen in many posts, there is a very fine line between the symptoms of Hypothyroidism and B12 deficiency!

The difference that I can see is the high blood pressure and "pitting Oedema" associated with Hypothyroidism? Those are the "new" symptoms, which I never had with B12 only deficiency. My blood pressure had always been fine, until 6 months ago. Now it seems to suddenly "peak", and then I have a big "crash", very similar to severe B12 deficiency!

I do not trust the doctors out here in Oman in the slightest! I had thought that the doctor I saw yesterday, after my latest "crash", was a good doctor, but I have just found out today that he had diagnosed me only with Ménière's disease! If I was living in the UK, that would have resulted in an immediate suspension of my driving licence, with the DVLA being informed, and would then only be able to drive when the doc has cleared me!

C'mon! I had a dizzy spell because I had high blood pressure!

Sorry for the long post!

It is not easy to be alone, and with doctors that are totally useless!

[patez]

Hi all.

Saw the doc today, and my blood test results were in (but they did not do B12 tests). It only showed high cholesterol, and I have been put on statins for that. Thyroid tests were all fine.

BUT! What was the severe chest pains, sudden extreme fatigue and tiredness, dizziness, high blood pressure, etc? I very much suspect that it was angina? The doctors said no, because nothing showed on the ECG, but it is a well known fact that an ECG quite often does not show an angina attack, the reason being that an ECG only detects damage to the heart. Angina, in itself, is not actually a heart attack, but a precursor to one, a warning sign? 50% of people who have an angina attack, will have a clear ECG because the heart has not been damaged!

Anyway! The statin treatment is the same for both high cholesterol, and angina.

I will start taking a low dose aspirin daily also, just to be on the safe side.

In conclusion, it was definitely not Hypothyroidism because both the T3 and T4 were fine.

I did not get to see the actual results, and the doc did not give me a copy, so I have to take his word for it!

Hopefully the statins will put me on the road to a full recovery?