Why everyone on Thyroid UK should also join the PA group and vice versa (part two)

[Ana_conda]

For those of you who can't handle the suspense (sometimes just getting out of BED is suspenseful enough) here is the end of part one - and the beginning of part two:

Hubby was so wasted by the end of last summer he couldn't stay awake for more than an hour a day. While thyroid therapy helped tremendously for a month or so, by then it didn't seem to matter how he played with the ratios of T4 and T3 - the pain was back with a vengeance, his digestive tract shut down, the appetite was gone.

At the end of September his sinusitis turned into a low-grade fever with extreme air hunger, followed by pneumonia. Afterwards I learned that pneumonia was a sign of total system failure.

I'm glad I wasn't aware how dire the situation was at the time. I might have given up too soon.

At that same time I stumbled across results of a study from India showing how they reversed cases of spinal cord degeneration with B12 shots. Thank God my Russian-born GP agreed to give it a go. After the third cyano injection, we saw modest improvement.

By the end of week one, my husband was back on his feet.

The moral of this story is, like many of people here with serious thyroid problems, we were sure that once the thyroid was under control everything else would follow. It ain't necessarily so. Being overly - focused on thyroid or B12 levels makes you oblivious to the fact that our bodies are incredibly complex machines. By the time we were aware there was a serious health problem, it was already a chain of problems which started years before. What we saw was just the tip of a very deep, deadly iceberg.

Of course all doctors know this stuff, right? It's shocking to realize how many don't.

To illustrate how easy it is to lose sight of an entire forest by focusing on a few trees, I'd like to show you a fascinating update by an American hematologist Dr. Ralph Carmel . It's a longish paper, but well-worth the read.

PA people will be interested in seeing the standards American doctors use to diagnose B12 deficiency. Many thyroid people might be surprised to discover that some of their most difficult health problems may not be a result of thyroid malfunction at all. asheducationbook.hematology...

The second link is a case report of a man with a "mobile sign" of B12 deficiency.

qjmed.oxfordjournals.org/co...

[beaton]

Hi Najii,Thanks for your interesting post. I agree with your statement about people not knowing that pneumonia is the body's way of shutting down. I look forward to reading the links.x

[Marz]

...wrong end of the day to read an in depth paper - but thank you anyway Have you posted the same on the PAS forum ?

Look forward to read the first link - have managed the second !

[Jazzw]

Wow. What an amazing story. Makes you wonder though - why are we so in hoc to Big Pharma? It seems to me that there could never be any harm in administering B12 shots to someone so run down. People like your hubby - people like most of us, too! Why don't doctors try this sort of thing more often?

Haven't read the links yet either, but I will - thank you x

[shaws in reply to Jazzw]

Thank you for these two links and your story.

Even in people who have pernicious anaemia who get symptoms returning before their next 3 monthly injection is due. They very rarely get an injection till the third month. One nurse sent away a patient because he came three days 'too early'. At one time people with P.A. got a monthly injection, then it was increased to two month and now it is three monthly, regardless of how patient feels.

[Ana_conda in reply to Jazzw]

Cyanocobalamin isn't prescribed much in the UK, is it? I suspect that could be a big part of the problem. There are no major side effects from a cyano jab every day, I'm not sure that's the case with the hydrocobalamin. Also, when you administer shots every day, you can really SEE the progress very clearly . Not so with monthly shots.

I think doctors should allow an initial trial of cyano for SOS cases - as much as the patient feels they need. When the condition has stabilized, hydro can be used for maintenance.

[helvella Administrator in reply to Ana_conda]

Basically, cyanocobalamin injections cannot be prescribed in the UK!

The British National Formulary states this:

The BP directs that when vitamin B12 injection is prescribed or demanded hydroxocobalamin injection shall be dispensed or supplied

Rod

[Ana_conda in reply to helvella]

That's what I thought. Hmmmm....the way I see it you have a couple of choices :

1. Organize a massive hunger strike outside the BNF's headquarters until they change the guidelines (the type of B12 used for injection differs from place to place : Israel for example, ONLY dispenses cyano. Hydro isn't even on the health fund's list of permitted pharmaceuticals!)

2. Be a stalker- first blast your GP with loads of "friendly" emails, faxes and voice mails about what you want and why. Then hang out in front of his office door for two weeks without being too conspicuous. Make like you're waiting for someone else. If he doesn't have you arrested for harassment - he'll write you a prescription for anything you want just to get rid of you.

3. Order your own cyano online but get that hydro prescription from your GP for afterward.

[Ana_conda in reply to Ana_conda]

The following excerpt explains why hydroxycobalamin isn't working that well for some of you.

The link to the full article is here :prohealth.com/library/showa...

What we know as vitamin B-12 is actually a collection of four related but different cobalt-containing molecules. Each of these forms plays a distinct role in the body as follows:

Hydroxycobalamin is a unique form of B-12 that quenches excess nitric oxide (NO?), the precursor to peroxinitrite (ONOO-).(147-149,172-176) Hydroxocobalamin (and methylcobalamin) also play a more important role in addressing neurological disorders than cyanocobalamin.(168)

Hydroxocobalamin participates in detoxification, especially cyanide detoxification. Cyanide levels are typically elevated in smokers, people who eat cyanide-containing food (like cassava) and those with certain metabolic defects. Excess cyanide in the tissues blocks conversion of cyanocobalamin to methylcobalamin or adenosylcobalamin. In such instances, hydroxocobalamin is the vitamin B-12 of choice.(169-171) Hydroxycobalamin is FDA- approved as a treatment for cyanide poisoning.(214)

Methylcobalamin is considered by many researchers to be the most active form of vitamin B-12.(177-179) It is the requisite form of vitamin B-12 in the methylation cycle.(179-186).

Methylcobalamin protects cortical neurons against NMDA receptor-mediated glutamate cytotoxicity.(187-188) and promotes nerve cell regeneration.(189) Methylcobalamin is the only form of vitamin B-12 that participates in regulating circadian rhythms (sleep/wake cycles). It has been shown to support improved sleep quality and refreshment from sleep, as well as increased feeling of well-being, concentration and alertness.(190)

Adenosylcobalamin (dibencozide), another highly active form of vitamin B-12, is essential for energy metabolism(191) and is required for normal myelin sheath formation and nucleoprotein synthesis. Deficiencies are associated with nerve and spinal cord degeneration.(192-193)

Cyanocobalamin, the most common form of B-12 found in nutritional supplements, is a synthetic form of B-12 not found in nature. It has the lowest biological activity and must be converted in the liver to more biologically active forms. This conversion is inefficient and some people who may not benefit from cyanocobalamin due to lack of assimilation or conversion.(194-195) However, the cyano form of B-12 is needed to balance hydroxycobalamin in performing its NO-quenching function and should therefore be included in hydroxocobalamin supplements.

[helvella Administrator in reply to Ana_conda]

I cannot email my GP - I have no email address. Indeed, I don't even remember which of the four doctors is supposed to be my GP.

I cannot leave voicemails for my GP - I have no phone number - only the general surgery number.

Seems likely that many others are in the same position. (For clarity, I am not a PA patient. This response is meant to be very general.)

We have also seen many posts over the years severely criticising cyanocobalamin - usually simply because it is cyano- and questioning the impact of that. I claim ignorance! But I can see that hydroxo- can act as a mechanism for removing at least cyanide compounds which might be a benefit of them?

Rod

[Ana_conda in reply to helvella]

Hi Rod,

Have a look at the end of the excerpt from the link I just posted above. If I understood correctly, cyanocobalamin is a necessary catalyst for hydroxycobalamin.

If this is so, there's no reason not to prescribe it. Sadly, medicine is often more about politics than making people well.

[helvella Administrator in reply to Ana_conda]

I don't understand the link. When you follow the reference from your link to the paper it references, it is going on about dicyanocobinamide. I think!

[Ana_conda in reply to helvella]

Well, I can't say I totally understand what they're talking about either!

Complicated, isn't it?!

One thing I did get from that article: it made me realize what cyano is REALLY good for. It's a good initial loading dose . That's it. Then it kinda falls flat in my opinion.

My own B12 levels weren't anything to write home about , so I started taking sublingual cyano for the last month in liquid and pill form. Can't say I felt any different.

Last night before hitting the hay I tried a sublingual methycobalamin . WOW - I don't remember sleeping that soundly in years!

But here's the strangest part-I was DREAMING. It's been years since I had one of those too....Very cool stuff.

[Margo]

I get monthly B12 injections always have had. I must be unique!

[Ana_conda in reply to Margo]

And how! It's criminal to deny patients their B12 shots. Is it because your health funds supply only hydrocobalamin and not cyanocobalamin???

[Hidden]

Thanks for your posts. The reference to methycobalamin helping regulate sleep wake cycles particularly helps me - I must say, the whole of that post suggests to me that methycobalamin is the one to go for, and the cyn. kind should be avoided.

I had been thinking that B12 is stored in the liver and I needn't keep up my son's doses - but I think it is possible that when I drew back on the B12 the sleep cycle broke down. I will keep a careful watch on that possible correlation now.

There is a BMJ 2014 article on B12 by Hunt et al I think which discusses this whole subject, if you have not found it.

Would you mind saying whether B12 has helped your son, and how he is now?