I am really stressed and don't know what to do next..

[Bellini34]

I posted on here last month regarding my low b12 blood test result and was eventually given the loading dose for two weeks (every other day) of Hydroxocobalamin.

Within days the palpitations I had been suffering madly from, eased and went away and I got my energy back. I even climbed Arthur's seat in Edinburgh, which I could never have done a few weeks before the injections!

A few weeks after my last injection I broke out in severe spots/acne on my chest and back and some in my scalp and a few on my face. They are starting to calm down now.

But now my eyebrows are falling out and my hair is so thin, I am actually noticing my scalp from the front of my head.

I have had enough, my thyroid was tested on the blood count and came back normal. There are no plans for further b12 injections either so I am supplementing with b12 oral spray as my fatigue is back and I am very depressed.

Can anyone offer any advice, I am a 34 year old woman, I need my eyebrows and I don't wan to be bald, yet...

[Gambit62 Administrator]

Few things

a) have you been told to go back for maintenance shots at any point? - if not then go back to the doctor and ask them what they think caused your deficiency - if it isn't dietary then it is presumably an absorption problem which means that eventually your levels will drop again to the point at which you are deficient again.

b) make sure that you keep a diary of symptoms and what has improved and when it started to slip backwards. Although UK regime for maintenance is 3 months where there isn't any neurological involvement (2 months if there is) there doesn't appear to be any scientific evidence to really support this interval - and many countries use monthly as the normal maintenance interval. Unfortunately because hydroxo is only licensed for use every 2 months it can get very difficult to get GPs to agree to anything shorter than 2 months though there is no actual evidence that this is harmful.

c) if not a member already then consider joining the PAS - they can provide you with more professional help and support.

pernicious-anaemia-society....

martynhooper.com/2016/09/23...

my symptoms start to come back within 24 hours of a shot - which is very much at the short end of the spectrum. It may be that you are someone who needs B12 a lot more frequently than it says on the tin.

[Bellini34 in reply to Gambit62]

Morning!

No I haven't been told to go back for any more shots, I think my doctor just suggested the loading dose and hasn't asked for any further tests or maintenance.

I have been vegetarian for over 14 years so I am guessing its diet related but again my doctor hasn't clarified this, in fact she was most bemused that I was pushing to have the loading dose (rather than waiting a few weeks) and also denied that my palpitations, brain fogs and clumsiness had anything to do with my b12 deficiency.

My doctor is lovely but quite young and always vey flustered and busy when I do manage to get an appointment with her, she sort of acts like I am a bit hysterical when I pushed to have the shots..

Its the hair loss and eyebrow loss which is really bothering me now, I am used to feeling like crap all the time and having to nap everyday after work. I am going to look now at the links you have suggested, thank you for your advice.

[Pixielula]

I would defiantly get your blood test results and post them with references on the thyroid website. You can get them from your Gp surgery just ask for a printout, the good people on the thyroid site will have a look and maybe shed some light on them. But thinning hair and eyebrows is a common sign of hypothyroidism. Many of the symptoms of b12 def and hypo can cross over. If your thyroid is failing you will still feel terrible regardless of your b12 being replaced........

[Bellini34 in reply to Pixielula]

Thank you, i have one print out that I posted last month but I will pop it on there too, thank you.

[Marz in reply to Bellini34]

Have looked at your print out on your last post and there are no thyroid results - however Folate looks fine from memory

[Marz]

Often they only test thr TSH - which is only part of the thyroid story. The word normal means you are in range - however it is where you are in the range that is important. TSH needs to be around 2.5 - and the FT4 and FT3 in the upper part of the range. Did they test the anti-bodies - TPO & Anti-Tg ?

Hope you soon receive the treatment you need.

[Bellini34 in reply to Marz]

Thank you for your helpful information, I am going to go back to the doctor this week and ask for a full thyroid blood check. The hair loss is really distressing and I am hoping to get correctly diagnosed soon and hopefully reverse the hair loss.

[Marz in reply to Bellini34]

It is often the labs that do not test the FULL profile - even when requested by the GP. This happens when the TSH is in range. You could have tests done through Thyroid UK - with Blue Horizon. Diagnosing Thyroid issues can take a long time as receiving the correct testing can be difficult. It is a finger prick test done in the home ....

thyroiduk.org.uk/tuk/testin...

How are your Folate levels ? Good levels are needed to work with B12 in the body.

[Bellini34 in reply to Marz]

Thank you I did have a look on that website and thought about getting the full thyroid check on there but I still need to get someone to do the actual blood test and that may be a problem but will look at the finger prick test now.

My folate levels as of learly September are- serum folate: 13.7 ug/l

My serum ferritin is 36 ug/l and (after doing hours of reading,) apparently hair loss can be caused if the serum ferritin is under 80! If I am reading that right, its all so confusing and I am already stressed, so I am not reading it as I should be. I really appreciate all your advice as I am trying to make head or tail of all of this.

[Marz in reply to Bellini34]

Yes it is often mentioned that Ferritin needs to be halfway through the range and needs to be good to prevent hairloss.

It is all very confusing so do keep asking questions - people are more than happy to help.

healthunlocked.com/search/h...

The above link will take you to previous posts concerning hairloss. Am sure you will find some helpful posts ....

[Bellini34 in reply to Marz]

Thank you, off to take a look at those posts now

[humanbean in reply to Marz]

Marz, I think the TSH you have suggested is a bit high. In a healthy person without a thyroid problem TSH would be about 1 - 1.5.

In my untrained opinion, thyroid treatment should start when TSH is 2.5 or over.

[Marz in reply to humanbean]

I am going by the chart on the Thyroid UK website - Understanding Results. Not able to do a link as I am on my phone and it's bedtime here in Crete.

I think if anyone can begin treatment with a TSH of 2.5 it would be a miracle - let alone 1 or 1.5. Of course we can live in hope 😊

[humanbean in reply to Marz]

I think I've misunderstood what your original mention of 2.5 was referring to. You wrote :

TSH needs to be around 2.5 - and the FT4 and FT3 in the upper part of the range.

TSH in a healthy person is lower than 2.5, but I'm not sure if that is what you were referring to. Since I've got confused I'll bow out of the conversation.

[Marz in reply to humanbean]

Yes you are right things can be confusing. I was indicating the level whereby treatment should be considered as the OP has not been diagnosed with a thyroid issue. Once on treatment then I would be suggesting 1 or below for the TSH - and of course the 1 - 1.5 is the level for healthy people - although we don't see many of those levels !

[Sleepybunny]

I had hair loss not just on my head but it improved after I got enough b12. I do not have a confirmed diagnosis of PA but am very symptomatic for B12 deficiency and in my case its not diet related. My TSH levels improved once I got B12 as well.

"I have been vegetarian for over 14 years so I am guessing it's diet related"

It's possible to have more than one cause of B12 deficiency at the same time. Have you had an IFA test (Intrinsic Factor Antibody) which can help to diagnose PA (Pernicious Anaemia) but the results are not always reliable. People can still have PA even if IFA test is negative. Do you have any relatives with PA?

b12deficiency.info/what-are...

Have you ever had a Coeliac test?

coeliac.org.uk/coeliac-dise...

I found it helpful to read "BCSH Cobalamin and Folate Guidelines", Page 29 is a diagnosis flowchart that outlines the process UK doctors should follow with someone who is symptomatic for B12 deficiency. I gave a copy to my GPs.

Lots more useful info about b12 in pinned posts on this forum.

"denied that my palpitations, brain fogs and clumsiness had anything to do with my b12 deficiency"

Think the symptoms you mention are on these lists of b12 deficiency symptoms....

pernicious-anaemia-society.... see Symptoms checklist. I ticked my symptoms and gave a copy to my GPs.

b12deficiency.info/signs-an...

Found these books useful

1)"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Up to date with UK guidelines. I gave a copy to my GPs.

2)"Could it Be B12" by Sally Pacholok and JJ. Stuart, very comprehensive book about B12 deficiency.

I am not a medic just a person who has struggled to get a diagnosis.

[Bellini34 in reply to Sleepybunny]

So much information, thank you. My head is fit to burst with all the amazing advice given on here, I can't thank you all enough.

[Hidden]

If you decide on the Blue Horizon blood test, try calling your nearest hospital and ask for phlebotomy. Explain you will have the kit with all the form ( they cannot draw blood unless they have a form) and ask if they will draw the blood for you. My local hospital phlebotomists were really helpful, told me the quietest day to go. I was in and out in minutes, pack the phial in a bit of padding, back in the envelope it comes with and overnight delivery via Royal Mail. It was easier than I thought it'd be.

[Bellini34 in reply to Hidden]

Brilliant, thank you.

[Marz in reply to Bellini34]

They also do finger prick testing as you know

[Bellini34 in reply to Marz]

Is that as reliable as the full blood count in your opinion?

[Marz in reply to Bellini34]

It is quoted on a daily basis on Thyroid UK where I have been a member for over 4 years. The Full Blood Count is about the red and white blood cells - not the Thyroid tests. Thyroid 11 is the most popular one - but there are other packages - take a look at the link I posted earlier ....

I live in Crete so pop down to the next village for my testing and tick the boxes of the tests I need.