More troubles, thyroid or b12? - Pernicious Anaemi...

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More troubles, thyroid or b12?

MuffinSx profile image
20 Replies

Just when I start getting over the shock about the hairloss I have noticed a big bald patch on my eyebrow?? AND my eyelashes are basically stuck to my mascara wand. Is this something else to do with thyroid or b12d? It's like a nightmare that never ends. I thought with levels being ok things would get better but no they seem to get worse still with the hair side of things. I'm still working on b12 and aware this could be a prob too but I'm getting so frustrated.

Thyroid sufferers - any pointers? Did yours stop falling out and regrow?

B12d sufferers - advice? Last time my b12 was low at 347 and the doc said she would let me try injections of I got ok from my midwife (17w pregnant at the mo). If my levels get boosted do you think it would get better? Have any of you got any pointers?

Arghhhhhh!!

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MuffinSx
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Sleepybunny profile image
Sleepybunny

"my b12 was low at 347"

Assuming you are in the UK, this result is probably in range but what some GPs don't realise is that it is possible for people to have severe B12 deficiency with normal B12 levels in the blood. Some GPs don't realise that you can have b12 deficiency without signs of anaemia or enlarged red blood cells.

Recent documents make it clear that patients who are symptomatic for B12 deficiency should be treated even if their blood levels are normal range.

b12deficiency.info/signs-an...

pernicious-anaemia-society.... Symptoms list here

There is also an article on B12 defic in pregnancy and newborns but it is only available to PAS members.

b12deficiency.info/b12-and-...

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate Guidelines" This document came out in 2014 and I believe the NHS is supposed to be following it. I found page 29, a diagnosis flowchart useful. I think there are references to B12 deficiency in pregnancy in the document.

Hopefully your GP and midwife will monitor you carefully. Your midwife may not be aware that nitrous oxide which is in "gas and air" used for pain relief in labour can cause toxic effects in those with B12 deficiency. Have you had your ferritin, folate , full blood count checked as well as your B12? There are other blood tests that can help to establish whether or not you have B12 deficiency eg MMA, Homocysteine and Active B12. These are available privately as well as through NHS. I do not know how pregnancy affects those tests.

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

I had hair loss, thinning rather than bald patches, which improved once I started taking B12.

Useful websites/books

pernicious-anaemia-society.... 01656 769467

The PAS are sympathetic and helpful to talk to.

b12d.org

b12deficiency.info/

"Could It Be b12" by Sally Pacholok. This book has several references to B12 deficiency in pregnancy.

Pernicious anaemia; The Forgotten Disease by Martyn Hooper

Living with pernicious Anaemia by Martyn Hooper

One thing I have learnt from experience is to always get paper copies of my blood test results. In the past I was told that all my results were normal and found some were not when I got copies. Your surgery may charge to print out copies.

nhs.uk/Conditions/Anaemia-v...

MuffinSx profile image
MuffinSx in reply toSleepybunny

I am in the uk. Almost 5 months preg. I'm convinced I may have alopecia!

I'm going to the docs on Tuesday to get my 4 weekly thyroid test done so I am going to ask about b12,vitD, ferritin folate and iron can be added on because I need something done about this before I go completely bald. I'm 26 and it's scaring me to death. This is my first pregnancy and I tried so hard for it and can't enjoy it with all this happening. I just need it fixed or hope that I will get there ..

Hidihi profile image
Hidihi in reply toMuffinSx

Hi. i suffered the 'thin' hair and had near bald patches, possibly due to b12d & low thyroid. with b12 supplementation the hair loss ceased. the near bald patches seem to be improving a little. i disguise with 'Viviscal Concealer'.

best wishes with the pregnancy.

H

MuffinSx profile image
MuffinSx in reply toHidihi

Are you being treated for thyroid? Is it underactive? Do you think the b12 helped the most. Sorry for all the questions just trying to understand it

Hidihi profile image
Hidihi in reply toMuffinSx

no worries on the questions. ask away. yes, i'm being treated with Thyroxine for low thyroid. and yes again , i think the b12 helped the most. it helped all round - with almost everything. do make sure that you have your Folate levels checked too. b12 needs Folate to work. do take it easy now that you are pregnant.

all good wishes

H

MuffinSx profile image
MuffinSx in reply toHidihi

Thank you. I have an appt at the docs so I'm going to ask as well as my thyroid to get tested for ferritin folate b12 vitD and iron. I think those are all to do with hair right?

Hidihi profile image
Hidihi in reply toMuffinSx

Hi again MuffinSx. do u know why your b12 is so low? if it's due to an absorption problem, then it's likely that your other vitamins are also low. when checking your Folate etc. @ the GP's, ask for a Coeliac test? this can be a factor in b12d.

whilst one's hair tends to get thicker/shinier during pregnancy. however, the opposite can also happen due to the fluctuating hormones. stress can play a big role in hair loss too.

check with your Midwife what you're allowed to take @ this stage of pregnancy. if u do decide to supplement do get a 'good' brand. lots of rest & relaxation is important.

H

MuffinSx profile image
MuffinSx in reply toHidihi

Hi. I don't know why it's low they never said. Infact they didn't even say it was low they said "fine" but when I researched I knew myself it was low so j went back to the docs and asked for a trial of injections which she agreed to but then I found out j was pregnant and she said I need to get the OK from the midwife before she will consider it. I do have people in my family that are celiac

Hidihi profile image
Hidihi in reply toMuffinSx

Hi M. this is neglectful of the Docs. they should investigate WHY you're b12 deficient & deal with the cause if possible. you may have Pernicious Anemia (loss/lack of Intrinsic Factor (IF) and will need ongoing treatment. or it maybe an absorption problem that can be corrected or it could be diet related, among other reasons such as Coeliac. because of the family history, i'd ask to be tested for the latter.

H

MuffinSx profile image
MuffinSx in reply toHidihi

She did check me for pa because that's also in the family. The if thing u mentioned I have never heard of so I don't think she done anything with that? I may toss celiac in aswell then see what she says lol

Hidihi profile image
Hidihi in reply toMuffinSx

IF = Intrinsic Factor. it's a test for PA, but not terribly reliable. it's got a tendency to give false positives & false negatives.did the Doc say you didn't have PA?

MuffinSx profile image
MuffinSx in reply toHidihi

Yes she said j didn't have it but I didn't ask for a copy so I will this time

Hidihi profile image
Hidihi in reply toMuffinSx

Hi M. she's probably done the IF test which was possibly negative. however, that doesn't mean you haven't got PA, because of the prevalence of false positives and false negatives. it's a good idea to have a copy of the results in your own records as sometimes the receptionists make mistakes in interpreting the results. mistakes can happen.

H

MuffinSx profile image
MuffinSx in reply toHidihi

Yeah I'm defo gonna ask for a print out this time. I usually do but I just forgot last time and then I'll post them on here x

MariLiz profile image
MariLiz

Well I lost the outer third of my eyebrows due to underactive thyroid, they've never really grown back properly, so I have to use an eyebrow pencil. Maybe, as you're pregnant, the baby is depleting you of vitamins? Check everything with your doctor, and see what's going on with the thyroid at your next blood test. We need B12 to be at a good level for thyroid meds to be used properly. Are you on thyroid medication? MariLiz

MuffinSx profile image
MuffinSx in reply toMariLiz

The hairloss started way before I had conceived. I've been hypo for 6 years but the hairloss has just started this year. Yes I'm on 125 levo but I think I may need increased. I'm gonna try my hardest to sort out my b12 too and hopefully reverse this. I don't wanna be a bald FTM

Hidihi profile image
Hidihi in reply toMuffinSx

Hi M. interesting the hair problem started BEFORE you conceived. re: the Thyroid: there's often a problem with converting T4 to T3. have you had your T3/T4 levels done? my sense is the b12 needs to be addressed pronto. btw, the Midwife may not be v. knowledgeable about b12, so the more info you have the better. you may have to signpost her to the PAS etc. etc.

MuffinSx profile image
MuffinSx in reply toHidihi

This is the story. In jan I started to put weight on and I knew that was a sign my thyroid was off I was also getting IVF at the time but he consultant said my tsh was at 8 and they need it under 2.5 to complete my final round. So I got more meds but started to notice a lot of hairloss but a good thing is that my thyroid had came down and I conceived naturally. (Yeeeey) that's when I joined thyroid groups and things and learned about hairloss and b12 and all other things. But the hairloss just seems to get worse and not better. My doc did say she isn't very thyroidy so refered me to an endo who is the worse and doesn't listen so better off without him anyway. I'm hoping my b12 will improve things if I can finally get the go ahead. Probably gonna be a fight but I'll try hard

MuffinSx profile image
MuffinSx in reply toHidihi

Oh and yes I have had t3 done. The range was 0.9-2.5 and mines was 2 last time but I'll have it checked again this time

Hidihi profile image
Hidihi

it sounds that the hair problem may well be a combination of b12 & Thyroid. both these 2 work syngeristically. and of course b12 needs healthy levels of Folate to work. i found with the addition of b12, my symptoms exacerbated short term. apparently this happens frequently. it's the healing process kicking in. when the nerves wake up, they can stir up symptoms, before the healing process begins properly. it's nothing to worry about.

H

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