Neurological question re B12 treatment

[Parody103mg]

I live in the UK and am treated by my GP through the NHS.I have just had my blood test results back today. I also have Hashimoto's that is not managed well although TSH is within range (only test available through GP NHS) I have a first Endo appointment at the end of this month

My serum vit B12 is at the lower end of the scale but 'within range', my serum Ferritin is slightly above range and my MCH (indicating probable macrocytic anaemia) is 20% above range and is red flagged by haematology (has been for over 2 years) I understand that the main treatment for this is B12.

I had recent abdominal surgery but unsure which anaesthetic was used - I have now requested to know. After this I developed neurological symptoms in my feet, fingers and tongue - along with other classic B12 deficiency signs/symptoms.

My doctor is fully aware of all this but says everything is fine and doesn't seem to see any reason to discuss further. I thought that neurological symptoms should be treated immediately to stop progression and the chance of irreversible damage despite my B12 falling 'in range'.

So, my question is, where do I go from here? Should I request a second GP opinion or do I just start to self medicate somehow or do I just leave it? I would appreciate your thoughts as I realise this doesn't fall within the usual low B12/PA that are treated according to blood results but still falls into a similar category as far as I can work out.

[Parody103mg]

I have had private 'active' B12 test too with similar results. Going to try a different GP at same practice initially and put in complaint against other. Looking into SI with B12. Checking out UK guidelines for this. Thanks for your help.

[Parody103mg]

The recent serum B12 test showed up as 259 (Range 180 -900) so I would consider that low and certainly not optimal. Considering mma test and IF private tests. Homocysteine would require a trip to London apparently but others would do for now. I know, not to supplement in mean time but concerned that condition is worsening so probably needs addressing asap really.

[Litatamon]

What is your doctor's explanation for your symptoms?

If your GP doesn't have an explanation then either he/she needs to be pushed more and/or you absolutely need a second opinion. I am so sorry that you are being dismissed.

---------

I selfishly need some help with something a bit off topic.

Hashimoto's - is it elevated antibodies that show the possibility of people having the disorder? I ask because I had no clue you could have it with a normal TSH. Could you tell me which thyroid indicators best reveal this issue? Thanks in advance.

[Parody103mg in reply to Litatamon]

Litatamon Only just got results back but have no faith in current GP as have had problems before with her re this with underactive hypo/hashimoto's thyroid issues. She gives me no hope - hence probably trying a different GP within practice but tbh I think I will have to go the self-medicating B12 route from the responses I have had on various sites.

No problem with your question re hashimoto's. Yes, it is to do with high thyroid antibody results - it shows that your immune system is attacking rather than protecting your body. And yes, you can have it with a normal TSH result. It concerns Free T3 and Free T4 (amongst others) to be in optimal range and therefore suitable medication to address to get to 'optimal' levels. Most often only TSH results are addressed and are only medicated with Levothyroxine (T4) - certainly many people need T3 in addition to achieve good health as they are unable to convert from T4 to T3 properly. It's where I'm at now too re Endo appt at end of July although not holding my breath on that one either. Look it up -it's a complex syndrome and one size does not fit all. Good to do your own research about it and ask lots of questions or look up their given knowledge on many these type of sites.Most possibly need to address diet too re inflammation levels - re gluten, dairy etc. Other people on here are much more knowledgeable than I am but it I do know that all these autoimmune diseases are a very frustrating journey. Consider joining the HealthUnlocked thyroid site where you can ask further questions about your concerns. Keep positive, keep researching and good luck with your health.

[Litatamon in reply to Parody103mg]

Thanks so much. I have elevated thyroid antibodies (and know this could be one's normal), but normal TSH. I would like further investigation since my b12 injections did not change some issues.

However, my GP sees a normal TSH and she is done.

-------

I started self-injecting almost from the beginning. It has been so freeing, best decision. So I get it when it all becomes too draining to continually challenge a GP. Banging one's head is not productive.

All the best to you Parody and thanks again.

[Parody103mg in reply to Litatamon]

You're welcome! It is very frustrating with these GP's as they really don't get it.

Hope you manage to get things sorted so your health improves as soon as possible.

[Sleepybunny]

Hi,

"I had recent abdominal surgery but unsure which anaesthetic was used - I have now requested to know."

Nitrous oxide which is sometime used as part of anaesthesia/pain relief inactivates B12 in the body.

Nitrous Oxide

gov.uk/drug-safety-update/n...

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

I wrote a very detailed reply on another forum thread with links to B12 deficiency symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

[Parody103mg in reply to Sleepybunny]

Sleepybunny - thank you. I will take a look at it all.

Unfortunately, I didn't know I had this condition before I had the surgery or I would have mentioned it. It's only because these symptoms developed afterwards that I started putting two and two together and began joining the dots.

I have written to the surgeon asking which anaesthetic was used but I haven't heard back yet. From the reading material, I want to ensure I never have it again if it was nitrous oxide.

Many thanks for your help.

[fbirder]

Ask (or demand) to see a neurologist.

[SaywhatIsee]

I agree with fbirder. I was ignored by my doctor and owner of the practice, for nearly a year, when I lost 10 kgs in 2 months after an operation, my 14th. Both my feet were swollen, with numb toes, but she wast bothered. So I waited for a Locum, who done more in 6 mins than she done in 6 years. But my main point is, that on very good advice, I was told that a Hospital blood test is far superior to a doctors, and I think proven to me. I had 2 tests done by a major hospital, with 4 deficiencies each, her test, 1 completely different mineral. So my pains in my feet are now up around my knees.

Not a lover of Neurologist, as I saw the local hospital one, very quick turn around, then referred to a Specialist at a famous hospital, who did not enlighten me, and forgot to do a DB2 in the blood test, and when told, " Oh, your doctor can do that ", really.

[Parody103mg]

Thank you for the information - all of which I will keep in mind.

[rosegrower]

As I understand it your red cells are enlarged (macrocytosis) and you have neurological symptoms in your hands and feet.. This raises the strong suspicion that you have vitamin B12 deficiency. There is no blood test which will confirm this. Medical scientists have known for years that a person may be seriously deficient of vitamin B12 whilst his serum B12 may appear to be normal and he may have no anaemia, why this is so is not understood. This diagnosis of B 12 deficiency has to be considered before anything else. The only way to check is to have a prolonged trial of treatment with vitamin B12. This can be by frequent injection or by daily tablets pf vitamin B12 at say a doses of 1–2 mg of vitamin B12 tablets per day. You cannot take an overdose of B12 and anything excess to requirements is excreted and does no harm to you whatsoever.

Many doctors still think that they can rely on the serum B12 level to give them the diagnosis. I suspect that your level was checked and found to be in the normal range. However the latest advice from NICE and many other publications is that the serum 12 level is not a guide to vitamin B12 deficiency. The diagnosis is made on clinical grounds only. If your doctor will not check with NICE or other authorities then you will have to find another. You can buy the tablets at any chemist but of course it would be better to be supervised by an informed doctor. If you have the condition and leave it untreated then it will steadily worsen and at some point become irreversible.

[Parody103mg in reply to rosegrower]

Thank you for your reply and information rosegrower. I am 'on the case' and doing further in depth research. So, totally agree that B12 tests are all rubbish basically and that the way forward is to trial vit B12 - either by injections or the vit B12 oils are looking very favourable through another site. Oral forms for this are no good either or certainly not regarding neurological symptoms and the many other deficiencies that may be involved as well regarding absorption and/or conversion concerns.

[Parody103mg]

Thank you CuriousNess. I have had my thyroid antibodies checked and both are very high - also looking into this.