New here, seeking advice

[Cassav]

Hi all,I have been suffering from neuropathy since 2014. The only way that I can describe it is reduced feeling which spread all over my body. It started with the genital area. My emotions also felt blunted and I felt less of a positive buzz from alcohol. At the time I had an MRI, which ruled out MS, tested negative for celiac and a neurologist checked my reflexes, which were normal. I'm sure that I also had b12 tested but I don't remember if it was active b12. The reduced feeling has remained, although I do feel little sparks of increased feeling sometimes but it doesn't last. I recently sought a fresh referral to a neurologist but this was refused as they said it isn't a neurological problem. I am now on thyroxine for autoimmune hypothyroidism, and have just recently introduced liothyronine. My hypothyroidism was diagnosed in May 2023 but I've had symptoms for longer and I was Subclinical in 2014. I know that it could be the case that my neurological symptoms are due to under treated thyroid but I would like to rule out PA/B12 deficiency. I have been supplementing B12/folate for months and my levels are quite high in range. I have started reading one of the pinned posts with links to trying to get my head around the PA/B12 issue.

[Nackapan]

Have you been given the IFAB test.Often one autoimmune condition comes with another .

If this test is negative it does not rule out PA .

Bug if you do have it around 50% will test positive.

Symptoms fo overlap .

The thyroid forum can help you.

Has your b12blood test shown low levels on the past ?

Hence supplementing oral b12/ folate?

Get s copy of your blood test results .

If you are in the UK it's highly unlikely an NHS test was an active B12 test .

It us possible to have in range B12 level and if not reaching cell level.

Perhsos when your hypothyroidism is treated appropriately you will see if your current symptoms resolve.

I'm glad you are in thr process of elimination and have had tests in the past.

I hope you get answers

[Cassav in reply to Nackapan]

Hi, no I haven't had the IFAB test.

I'm a member of thyroid uk and I started supplementing B12 and Folate based on their advice as optimal levels are needed for thyroid medication/conversion to work properly. My B12 and Folate weren't under range as you can see from my result in May 23 before supplementing.

Results:

May 23 (before supplementing with methylated B12/Folate)

B12 494 (180-999)

Folate 7 (3.86-26.8)

Think around August 23

B12 620

Folate 14

Nov 23

Active B12, via medichecks

140 (37.5-188)

Dec 23

B12 800 (180-999)

So, as you say it is still possible for B12 levels in the blood to look fine but for it not to reach cellular level.

Thank you very much, I hope that I get some anwers too. Like many on this forum I have suffered in silence for a long time. But I'm advocating for myself now😊. I'm hoping that being on an adequate dose of thyroid medication will resolve my symptoms too.

[Kennyatw in reply to Cassav]

I've had neuropathy in my feet and ankles due to a side effect of harvoni. I got it in 2015 and it's been getting a little bit worse every year. The last time I had my bloodwork done my iron was 81 and the rest of them were pretty much normal. If you want to you can email me at [e-mail] and we can talk about it moreKen Atwood

[Fluffyfloo]

In 2022, I had my thyroid out due to Graves' disease. When my numbness became bad last year, I, too, assumed it was from being hypothyroid, and that there was nothing I could do about it, because my heart could not tolerate the dose of levothyroxine the rest of my body needs, and so, having numbness, although quite bad, was preferable to having chest pain (and then, maybe a heart attack) from a higher dose of levothyroxine. I had stopped B12 self injections sometime after the pandemic began because it was hard to get, and I couldn't get it, and I was OK. I was fine until last year. I began my self injections again recently and discovered that my symptoms responded to the B12. Now, I don't know if I'll have some permanent damage. Don't make the same assumption I did that this is from your thyroid being low. It's easy to go into denial that B12 is the culprit, especially when so many doctors are doubting about B12 being the problem for many of us.

My endocrinologist that I have now is pretty good. When I told her that when my symptoms came back last year, it was so far removed in time from when I stopped the monthly injections, that it was hard for me to not look for other causes for them besides B12 (like my hypothyroid levels). She explained that B12 stores in your fat, and so it can take a really long time before it causes symptoms again.

8 years ago I asked for the intrinsic factor antibody test, and it came back at the very top of the range (2.1). So 2.2 would have been a diagnosis of PA. So I had asked for the intrinsic factor antibody test again from my general doctor last year in August. He refused, and said he couldn't justify it to the insurance company, who would call him up to question why he ordered it. He did check my B12, which was 500 something. Here, they know nothing about pernicious anemia and believe I would have to be anemic to have it, or be below range for B12. I'm done with them. They are not real doctors here, and with regard to this condition, mostly anywhere else either. They're not educated and seem to be more like representatives of the insurance company. Do whatever you have to do to protect yourself if they don't help you.... But we shouldn't have to do this on our own.

[Cassav in reply to Fluffyfloo]

Thank you for your response. I thought that B12 or MS were the culprits in 2014 but the total B12 came back normal. And I was just sent on my way when they couldn't find the cause. More than likely they thought it was all in my head🙄. I am worried about permanent damage too❤. I am actually under the care of an endocrinologist and she seemed decent so I will ask for the IFAB test. I really hear you about the lack of knowledge of these so called professionals. It's incredibly unfair and frustrating but I guess I've accepted now that the most I can get from them are tests and prescriptions😅!

[Technoid in reply to Fluffyfloo]

"She explained that B12 stores in your fat"

B12 is stored primarily in the liver and muscles - not so much in fat. There are multi year reserves but mobilisation from the liver may be compromised in the case of PA. A regular intake is better and will keep MMA and Homocysteine low - just because it might be possible to survive without regular B12 intake doesnt mean its necessarily healthy or safe so I agree with you on being proactive.

[Technoid in reply to Technoid]

She was probably confusing fat-soluble and water-soluble. Many fat-soluble nutrients have reserve storage in fat, while water soluble ones usually do not. But there are exceptions such as B12, which has several years and folate which has a few months but are both water-soluble vitamins.

[Narwhal10]

Hi Cassav,

Welcome here. Good to know you are reading pinned posts. Sleepybunny does put very informative posts.

As Nackapan said autoimmune hypothyroidism and P.A/B12 deficiency do go hand in hand.

Please apply for hard copies of your Medical Records so you definitely know if and when you were tested for B12 deficiency. The NHS does not test for active B12 as Nackapan said. Plus, the cut off levels and ranges for B12 vary from Integrated Care Boards/Trusts.

You can have high B12 levels because you are supplementing but also they are only measuring what is happening in the blood. Not what is happening at cell level. Plus, an arbitrary figure on a screen does NOT tell anybody your symptoms of pins and needles, numbness, feeling unsteady on your feet.

Do any family members have P.A./B12D or autoimmune diseases ? When you put all your Medical information in order, you can say this happened at this time and date and when you keep a diary, you can give a doctor a far better Medical History and Clinical Picture. Then they respond more effectively because you have taken Control of your information.

Their Decision Making is more effective. People often forget that General Practitioners oversee thousands of illnesses/diseases/conditions to deal with. Help them out by knowing what happened when and if this is a new set of symptoms or continues.

Best wishes.

[Cassav in reply to Narwhal10]

Thank you for taking the time to respond. I just checked my medical summary and my total B12 was tested in 2016:

470 (160-295)

I tested my active B12 privately.

My mum claims that she had a thyroid issue that 'went away'🤦🏾‍♀️ - yes, I know how that sounds! I've asked for for copies of her results but she was a bit resistant but I'll keep trying. Thank you for your advice about putting the medical information in order. I will do that and ask for the IFAB test as a first step.

[Narwhal10 in reply to Cassav]

Hi Cassav,

As stated in my previous reply,

Please apply for hard copies of your Medical Records using standard documentation from the Information Commissioner’s Office .

ico.org.uk

They are 50 times more important than your bank/building account.

Let me just say, the NHS Databases are not very good. Results, diagnoses, repeat prescriptions, X-rays are growing legs and walking off.

Every Integrated Care Board/Trust has a Data Protection Officer, Information Governance Team, an IT team and a Caldicott Guardian. There are massive laws around obtaining, transferring, storing accurate data. Plus, they feed into lots of other ‘internal and external’ systems.

🤓

[Cassav in reply to Narwhal10]

Thank you, yes you're right I should get my full medical records and not just the medical summary😊

[Cassav in reply to Narwhal10]

Narwhal10 I requested my medical records from the ICO but I received an email response saying that they don't hold this information and that I need to contact the data controller?

[Narwhal10 in reply to Cassav]

Sorry Cassav,

No, you apply to your own Clinical Commissioning Group, Integrated Care Board, NHS Foundation Trust, GP Surgery. They have your Medical Records.

So, if you live in Birmingham, then from their website of Sandwell and West Birmingham Foundation Trust - search for Data Protection and I have found information, an email address and an address which starts with Governance Support Unit which is for clinic/hospital notes. Your GP has a Practice Manager.

If you lived in Scotland, say, Perth then your GP Surgery is totally different. It is likely to be NHS Tayside for Hospital and Clinic notes.

However, there is a standard template/letter to apply to ANY organisation whether that be your [Electric/Gas company, a past Employer] which hold Data/Information about you on the Information Commissioner’s Office website. It saves you having to compose a letter/email from scratch.

The I.C.O. is a non-departmental Public body. The Commissioner's mission is to "uphold information rights in the public interest, promoting openness by public bodies and data privacy for individuals”. It is sponsored by the Department for Science, Innovation and Technology.

We do lots of things on-line nowadays, our Medical Records are on computers but doctors are not brilliant at Record Keeping and the NHS databases are not the best. 😉

Joining the PA Society is definitely worth considering.

🤓

[Cassav in reply to Narwhal10]

Thank you for the explanation ☺

[Narwhal10 in reply to Cassav]

Pleasure. Get the IF test and result.

But you will know exactly the date, place and neurologist you had MRI, when reflexes were tested.

Then other stuff from endocrinologist. Then stuff from GP. It all adds up.

Now, this bit,

My mum claims that she had a thyroid issue that 'went away’ is that what your Mum believes ? Or has she been told that by someone ?

Someone with Crohn’s Disease (which is an Autoimmune Disease) where people can be house-bound because they are simply in the bathroom, was trying to educate an acquaintance. The person piped up and said, My uncle had that, it lasted 3 days. They clearly did not have Crohn’s disease. Similarly, there is no cure for asthma (inhalers and nebulisers) - I have caught out a GP Surgery stating that.

Best of luck with it.

[Cassav in reply to Narwhal10]

Sorry Narwhal10 I missed this response. My mum believes that she had a thyroid problem that went away but it wasn't clear as she didn't really want to discuss it at the time but I will try her again. She had cancer during covid and is in remission so that explains her not wanting to question her doctors.

Do I still need a IFAB test as i've been supplementing for months and my serum and active B12 are high in range now so then I don't have an absorption problem? Or could the supplements be masking an absorption problem due to intrinsic factor antibodies. I hope that it's starting to make a bit of sense to me now?! 😀.

[Narwhal10 in reply to Cassav]

I’m extremely sorry to learn of your mum. I do hope she is managing ok. You know your mother best, she may never want to discuss the thyroid issue. I honestly do not know. Some people can be private and not want to talk about things. They can handle and process things quite competently on their own. If this is the case then others need to respect this and not pressing nor demanding the person to respond.

With regards to supplementing and high levels. Your blood results say nothing of your symptoms. It is a number. A blood result does not say what is happening at cellular level.

The IF test is only 50 % accurate. The timing of the IF test whilst supplementing, my answer is I do not know. Read Sleepybunny’s post, contact PA Society and ask advice or read their literature.

Many of us have brain fog. I learn new stuff but then spend 3 weeks trying to remember a really important medical word. Often saying, Can I get back to you on that ? People often forget I have the disease myself.

😘

[Cassav in reply to Narwhal10]

Thank you. She is doing well. I certainly can't fault the NHS for their treatment of her cancer. Yes, she is quite private about her health so I'll have to accept that.

I feel like I've always had a poor memory but I have no idea if it's a result of not being fully engaged and present in life or physiological😄🤷🏿‍♀️!

Thank you😊, your advice is much appreciated. I'll check re the timing of stopping supplements before IFAB testing.

[Sleepybunny]

Hi Cassav,

Welcome to the forum.

What to do next if B12 deficiency suspected

b12info.com/what-to-do-next/

If you think PA is a possibility then worth joining and talking to PAS (Pernicious Anaemia Society).

PAS

pernicious-anaemia-society....

Membership of PAS is separate to membership of this forum.

pernicious-anaemia-society....

You do not need a PA diagnosis to join.

PAS have lots of useful leaflets eg Helpsheet for Patient-GP Discussion

pernicious-anaemia-society....

I suggest you search online for this UK document "NICE CKS Anaemia - B12 and Folate deficiency" and read it thoroughly including the section on Background Information.

Try to find the local B12 deficiency guidelines used by your ICB (Integrated Care Board) or Health Board and compare them to NICE CKS document.

I left a more detailed reply in this thread "AUTOIMMUNE LIVER BLOODS", four threads above yours.

healthunlocked.com/pasoc/po...

More B12 info in pinned post "Various PA/B12D resources.

I'm not medically trained, just someone who suffered for years from unrecognised and untreated B12 deficiency.