Does anyone suffer with B12 Deficiency symptoms with HT?

[animalfanatic85]

I got diagnosed in March of this year with under active thyroid and i am 50mg of Levothyroxine. I have been suffering soo much with symptoms still and feel like i have been going insane with memory loss and cognitive impairments and no energy. I asked for a full blood count in September and noticed my B12 was at the very lower end of 264ng (range is 211-911ng) i have since searched this up and this is classed as borderline deficiency! Why hasn't my doctor picked this up? I took myself too Holland and Barrett's and i have been taking b12 spray. I requested another thyroid and b12 bloods to be done last week (8.12.20) and read results on patient access app and my b12 has slowly climbed from 264 ng to 403ng. I have noticed a difference with myself. I have realised without this b12 my symptoms and cognitive function is quite severe! I calling my Doctor tomorrow to ask for the injections. I have since ran out of the spray and i know my range will go down without it! does anyone else have b12 deficiency as i would like to know how common they both go alongside each other? I have been doing my research and i am ready to speak to my Doctor tomorrow!

[shaws Administrator]

Your dose of levo should have been increased every six weeks after a blood test. 50mcg of levo is a 'starting' dose.

Before taking B12 supplements you must ensure you do not have Pernicious Anaemia another serious autoimmune condition if not treated or under-treated.

Once we have one autoimmune disease we can develop others. At present I have about five.

[animalfanatic85 in reply to shaws]

Hi Thank you!

I asked for my dosage to be upped and he said I was on the right dosage 😔.

I will ask about this too! My friend has mentioned this as she has vitamin b12 deficiency! 😔😔

I have been on that the drs for months ! I have left to feel like I have been going insane!

I have had to loads of research tonight!

[shaws Administrator in reply to animalfanatic85]

There is also a Pernicious Anaemia Society in Healthunlocked who may be able to advise.

healthunlocked.com/search/p...

[animalfanatic85 in reply to shaws]

Thank you! How would the Dr find out if I have pernicious anaemia. I have always been anaemic even I. My pregnancies. And everyone I see my doctor she always says that I look pale 😬.

[helvella Administrator Thyroid UK in reply to animalfanatic85]

Pernicious Anaemia (PA) is not what I think you are referring to - which is iron deficiency anaemia.

PA is an inability to absorb vitamin B12. Despite having the word "anaemia" in its name, actual anaemia is a late stage symptom.

Do follow the link shaws posted and post there about B12.

[animalfanatic85 in reply to helvella]

Thank you. Yeah I have read a little about pernicious anaemia . Thanks

[lisabax in reply to animalfanatic85]

You say you have access to your test results online? What are your latest levels of TSH, T4 and if tested T3, along with the reference ranges (in brackets after your result)? If you post these on here, members will comment about thyroxine dosage. My husband has been kept on 25mcg of thyroxine for about 3 years now and doctor refused to increase dose because many GPs simply don’t understand thyroid disease!

[animalfanatic85 in reply to lisabax]

Hi

I only have my Serum TSH Level which as of the 8th December was (2.50miu/L) it was( 2.95miu/L) in September and (1.99 Miu/L ) in June of this year. I haven't had a Serum T4 since my diagnosis is march which was (14.0 pmol/L ) never had my T3 done as don't see the results for these on my patient access account.

[annnsandell]

If you are absorbing B12 from tablets or spray you shouldn't need the injections that are generally given to people who cannot absorb it normally. GPs tend to keep B12 to injections to a minimum and you will feel awful relying on them when nearly due for the next so don't go down that road unless you have to. Has your iron been checked?

[animalfanatic85 in reply to annnsandell]

But since March I don't think I have been absorbing B12. It's only gone up slightly since taking the 1000mg spray from Holland and Barretts. If I stopped taking it my levels will stay the same or go down again and this is what I want to get across to the Dr . It's affecting me sooo much now and my impaired cognitive function is affecting my every day life .

[hjh88]

It’s possible that you’ve got hashimotos which will prevent you from absorbing and using vitamins effectively, particularly if you’re under medicated for your thyroid. It’s also worth noting that problems with cognition can be caused by poor thyroid function as well as B12 deficiency. In any case, improving your thyroid health will improve things - either by improving your cognition itself or by improving your vitamin absorption or both.

Do you have full thyroid test results including FT3, FT4 and antibodies tests? If not a good place to start might be to get these tested privately and to pressure the GP to do these too/see another GP at the surgery etc.

[animalfanatic85 in reply to hjh88]

I've just been on the phone to the GP now. She wouldn't accept that it could be B12 so I told her my levels and she said they won't give injections they don't give for levels will of 264ng even thought that's borderline!She said she is going to test for intringency and antibodies and she said if that tests negative then I can have the b12 injections .

[hjh88 in reply to animalfanatic85]

Like I say, it might very well not be exclusively a B12 issue. Poor absorption of B12 can be caused by hashimotos (more commonly known as autoimmune hypothyroidism in the UK). You should ask your GP to do a full thyroid panel (including FT4, FT3 and antibodies) as if these levels are out of whack you can look at improving your thyroid treatment which could then improve your B12 absorption and cognition 🙌

Pernicious anaemia tests are worth a go too though just to rule this out.

[So_over_it in reply to animalfanatic85]

I am not a doctor I do have hosimotos and had low b12 . Just a little tip I buy my b12 injections off of a sight called ushcg.com they sell b12 injections and troches it’s a reputable company ! I couldn’t live with out this . I give myself two shots a week at 1ml . Try it out good luck !

[animalfanatic85]

Thank you for the information! They are doing an antibodies test on me and testing for itringincy too. Xx She said if it comes back negative then they will go ahead with the B12. I also asked about upping my dose from 50mg but they said it can cause heart palpitations. 😬

[Polaris]

40% of those with HT also have Pernicious Anaemia.

With low B12 and neurological symptoms, you should be treated with B12 injections every other day until no further improvement to avoid permanent damage, so don't be fobbed off.

Lots of excellent information and advice on writing to your GP on this link

b12deficiency.info

Recommended books:

"Vitamin B12 Deficiency in Clinical Practice " Dr J Chandy

"Could it be B12?" - Sally Pachlok

"Pernicious Anaemia" - The Forgotten Disease" - Martyn Hooper

Best wishes af85

[Polaris]

PS Be aware that IF test is only 50% accurate - Martyn Hooper, Chairman of PAS had three tests, by which time he was permanently damaged....... This is why many of us self inject.

BMJ REsearch Document - Summary points:

"Vitamin B12 deficiency is a common but serious condition

Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment

There is no ideal test to define deficiency and therefore the clinical condition of patients is of the utmost importance

There is evidence that new techniques such as the measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency

If the clinical features suggest deficiency then it is important to treat patients to avoid neurological impairment even if there may be discordance between the results and clinical features "