Having Other Autoimmune Diseases.

[Narwhal10]

John Hunter, a Scottish surgeon, advised his protege, ‘Don’t think the experiment, try it.’

This particular student attended many lectures which included physics, chemistry and medicine. The ‘Father of Immunology’ also took a keen interest in zoology. Despite France being at war with Great Britain even Napoleon gave Edward Jenner a medal.

People new to Pernicious Anaemia/vitamin B12 deficiency who have no choice to self inject are often confused as to the frequency that they should. You may want to consider Hunter’s words, ‘Don’t think, try.’

Your body tells you by symptoms, so listen to it. A symptoms diary is a record. For many of us, we may not have autoimmune B12 deficiency but we have comorbid autoimmune diseases such as Hashimoto's thyroiditis, Graves’ disease, Ord's thyroiditis, Crohn’s disease, ulcerative and/or colitis, celiac/coeliac disease, Evans syndrome, Sjögren syndrome, Addison’s disease, Endometriosis, Vitiligo, AntiPhospholipid Syndrome, asthma, Type 1 diabetes, Guillain–Barré syndrome, CREST syndrome, Ménière's disease or Behçet's disease. I could go on and on but I’d bore myself.

However, I have a family history of one those diseases and have NEVER been tested for it. Weird that ? Yet for security questions, in technology, I am often asked for my mother’s maiden name. One of those diseases is informally called the name. Last count, I am up to 5 autoimmune diseases.

Medicine can be described as the science and practice of caring for a patient. I do understand that a hardworking G.P. may see or speak to up to 60 patients a day. Their heads may be frazzled.

However, you know what they say, ‘Science is weirder than fiction.’

As a nature lover, often I see the same patterns being repeated over and over again. This stunning orchid looks like a magnificent bird to me. 🤷‍♀️

[WIZARD6787]

True that!

I find it helpful to understand that physicians are applied scientists and not experimental scientists or researchers. Some physicians are nothing more than technicians following flow charts without much competence.

This does not make them bad people just unhelpful in many cases.

I have been fortunate to come across some very effective professionals. They all seeem to have and practice humility.

[Narwhal10 in reply to WIZARD6787]

Correct WIZARD6787

They apply the science with flowcharts and algorithms. The creators of those are whom ? 🤷‍♀️

[WIZARD6787 in reply to Narwhal10]

I believe that in the UK that would be NICE. In the USA it depends on what software is used. In the USA we are not allowed to view the software.

Most experts that have flow charts to follow tend to not follow them and it seems that makes them feel like they are experts.

With B12 the physicians tend to have a self centered view of symptoms. They see fatigue as being as tired as they have ever been and the patient/victim as just not being as wonderful as them.

I also find it helpful to understand their management style in that it is similar to middle managers in that they only deal with a problem that they are forced to and ignore all the rest and 80% of the problems will go away. The problem being the patients expressed symptoms. As long as the patients tests are in range or a procedure is not called for then they just wait until the problem gets bad enough that the tests show a problem exists. Then they undertreat.

The medicial staff I have had to deal with are emotionally immature or mentally ill.

It is an adversarial relationship and I have little power.

I bring notes and questions with me. At first they became part of my record and they figured out that was not a good thing for them. In the USA I can write them on my Patient Portal and it is part of my record. This threatens them but it has value to me.

I only started self treatment as the best I could hope for was 1 mg of cyanocobalamin a month injections. 1 mg cyanocobalamin and one mg folic acid daily. The GP in charge decided that the injections were not needed. I was terrified of permanent damage.

I am also very fortunate in that as far as I know I have no other issues. Both I am not ill and I do not need prescriptions.

I will write and ask for tests and the likely response will be that my insurance will not cover them and I will be forced to get documentation the insurance company will cover them. I am enough of a dick that I may bring the documentation with me. I can also expect that the GP will have me see a low level nurse or have me see a hematologist 2 hours away. That hematologist wants no part of me as I show him to be not competent with B12.

I also find it helpful to understand one becomes a physician by passing multiple choice tests. It must suck to go through medical school and then your job consists of knowing what flow chart to use.

It seems to me they have a low sense of self worth and are compensating with self esteem and that does not work over a lifetime. Ask be how I know. 🙂

[Narwhal10 in reply to WIZARD6787]

Interesting points and hurray, you have your own health sorted with B6. *I’m just thinking out loud, in the U.K. people can be told, our Trust/Health Boards has its own policy. So, NICE gets thrown out the window. Otherwise known as the postcode lottery.

Like most things, it’s generally about following the money. Commissioning is assessing needs, setting priorities, planning services, procuring services and monitoring quality. It’s a massive ‘internal market.’

I couldn’t help but think to myself at previous appointments,

‘That’s a lovely fountain pen, how much did that set you back ? £300 + or $366.25. It really would be a shame to loose that !!’ 😈

* edited as MY mistake.

Commissioning process cycle.

[WIZARD6787 in reply to Narwhal10]

I don't have my supplementation figured out including B12 and B9.

B6 is pretty much solved other than I will try and reduce as my body changes/improves. I no longer experience the pain of peripheral neurotherapy to any degree.

I do have a methodology that likely will lead to discovery of how to supplement.

[Narwhal10 in reply to WIZARD6787]

Big apologies WIZARD6787 about getting your illness wrong. 😞 Sorry, I misunderstood, misinterpreted and wrote about your vitamin B12 and 9. My mistake.

Thank goodness about the pain of neuropathy dissipating. It is good that you have a plan, a method to move forward. In the hope that you reduce your symptoms even more.

🐳

[WIZARD6787 in reply to Narwhal10]

I wish the B12 and B9 AKA B12 deficiency and PA was as easy to treat as the peripheral neurotrophy which was easily treated once I knew the cause was B6 deficiency and not caused by anything else.

I did take a wrong turn until I came to understand that in the Netherlands there were 70+ cases of people taking 500g a day and developing peripheral neurotrophy which went away when they stopped. This kicked it into a mega alert and then there was a lot of misinformation about B6. It became "bad" and guessing many people suffer from peripheral neuropathy for lack of adequate treatment. Even more than before.

[deniseinmilden in reply to WIZARD6787]

Well put! Thank you.

[wedgewood]

Great post ! Thank you Narwhal !

[Narwhal10 in reply to wedgewood]

The NHS system. The GPs are just a cog in a big wheel. If a patient told any doctor whether they are a specialist or not,

‘You are not that important.’

They would be deeply offended but it is the truth. The NHS is a hierarchical structure with an executive board. Blah, blah, blah. I do this when I start to bore myself.

😉

[MePo]

"However, I have a family history of one those diseases and have NEVER been tested for it." My maternal grandfather died from PA in his early '40s in the 1940s, two of his sons and a daughter had PA, and I now think, from what I've learned for my own health, my Mum also, from my considering her health over the years. I have diagnosis of low stomach acid and numerous stomach/gut related health problems for decades, various autoimmune conditions; Coeliac, Sjogren's. etc... But Still medics don't listen to the information, I'm not telling them to make myself look clever, merely to switch their lights on so they treat me appropriately-big Fail todate...... But we're supposed to take responsibility for our own health (but they don't Actually like you doing that, go figure..😏) so thanks to You and the wonderful support and info from PA Society and other forum members I am still here. I would love to sit down with a caring, knowledgeable doctor to work out the perfect 'routine' for B12 and all other necessities to make it work for My health, if only there was a list of medics you could rely on. This was going to be short, sorry 😅 Thank you for your energy, giving us all such helpful info. Oh, and the Orchid is indeed like an exotic bird to my eyes 🥰

[Narwhal10 in reply to MePo]

I am so sorry MePo,

A whole family history of 2 generations with P.A. A maternal grandfather who died at a premature age. It makes me sad. Please talk, it doesn’t matter how long your replies are. People read, understand and those on the start of their journey, you are encouraging and educating them.

I really am truly sorry of the doctors approach to you, MePo and your ‘multiple autoimmune syndrome’. Please note the 3 words I have used.

I do get brain fog, so have to text myself ‘words’. I take a keen interest in nature as did the Swiss psychologist Jean Piaget. He studied zoology first. His work on child development and cognition made him infamous.

With regards to coming across as big and clever to medics, you are advocating for yourself. In a recent article by Aronson, a British clinical pharmacologist and was an honorary consultant physician, he has quoted Sir William Osler (Canadian physician),

‘Listen to the patient, (s)he is telling you his (her) diagnosis.’

Cognition comes from the Latin, cognition, ‘to get to know’.

People think I’m totally weird. They don’t bother to ask how I know. For example, in the metamorphosis of tadpoles to frogs, it is initiated by the hormone thyroxine. In medicine, that’s denoted as T4.

How many times have I been told my bloods are normal ? Too many is the answer. 😊😘

Aronson J K (2022) When I use a word….Listening to the patient. British Medical Journal.

[Technoid in reply to Narwhal10]

If you like exploring the origins of words this is a great book:

penguinrandomhouse.com/book...

[Narwhal10 in reply to Technoid]

Thank you Technoid,

That’s very kind of you. The problem is my home is a bomb site. I have a whole library, preferring to read medical or philosophical books. Everyday is a school day for me. Most medical words are either Latin or Greek. I went to a Catholic school, so, yep, Latin and Latin based languages.

I studied Mathematics and the subjects that are similar to it, we use Greek letters. Recently, I met up with an old friend, who tried to sell me the KETO diet. He did admit that he had become a preacher on it. However, he did not take on board that I knew more than him. I stated, I have qualifications in biochemistry, the Gut Brain Axis etc. He does not understand how my body, genetics or biochemistry works. He kept asking how much carbohydrates I ate a day. What I ate for breakfast, lunch and dinner.

Technoid, I had such a long extensive neurological insult that my Migrating Motor Complex is impaired as is my vagus nerve. Several times I stated to him, I can only eat once a day. I do not feel hunger, I eat because I like the taste of food and I need fuel. When we started getting down to the nitty gritty, I became complacent. Yep, my bile duct doesn’t work properly, I have very little stomach acid, my small intestine doesn’t absorb, the valve between my small intestine and large intestine doesn’t work, my gut microbiome is way out of balance. (Any live bacteria in yoghurts or whatever causes a relapse of visible neurological symptoms). I have a 47 page report of my severe and moderate intolerances.

Toileting is a major issue and has been for decades. Even when I lived with you, meaning him, over 20 years ago but I masked it. I did show him this:-

northumbria.ac.uk/about-us/...

Venus Williams has Sjögren syndrome, she finds a vegan diet works for her. So that is game, set and match. 😆

[MePo]

😘