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[Maryjane]

I went to a lecture on B12 and thyroid a couple of mo the ago at Logjborough university, and this lady was giving a talk .

My husband has been in contact with Dr Chandry also , as the paper says anything under 500 and you are deficient better to be at a 1,000.

B12 is the elixir of life , from where everything else centres from. Many ladies with B12 deficiency will also be deficient in Vit D , ferritin and have thyroid issues but again the NHS within range are very definitely off range for many, as no ones body is the same and drugs like omeprazole stop the absorption of B12 , and when we have an anaesthetic this can also deplete B12.


http://www.dailymail.co.uk/health/article-3729847/Feeling-tired-forgetful-Vitamin-B-levels-blame.html

[Maryjane]

He is hugely better , he was heading for a wheelchair by Christmas I would say and early retirement.

Problem is if not caught early enough the damage is irreversible, appaz it has got lost in medical teaching as to the dangers of missing it.

[Dyan]

Tempest- just caught up with your thread and just want to say I'm thinking of you and sending you a BiG X

[Janice68]

Sorry to hear you've been through so much can I say very scary too!!
It all brought tears to my eyes!!
Also your are very lucky to have your husband by your side what a rock he is!
Im sorry to hear it's now effecting him too.
 
Sending you both a big hug!!
Take care!!


 

[Annie0710]

I went to a lecture on B12 and thyroid a couple of mo the ago at Logjborough university, and this lady was giving a talk .

My husband has been in contact with Dr Chandry also , as the paper says anything under 500 and you are deficient better to be at a 1,000.

B12 is the elixir of life , from where everything else centres from. Many ladies with B12 deficiency will also be deficient in Vit D , ferritin and have thyroid issues but again the NHS within range are very definitely off range for many, as no ones body is the same and drugs like omeprazole stop the absorption of B12 , and when we have an anaesthetic this can also deplete B12.


http://www.dailymail.co.uk/health/article-3729847/Feeling-tired-forgetful-Vitamin-B-levels-blame.html

Maryjane many of the members on the b12 group I'm on plus the admins went to that

Ditsy me didn't realise how close it was to where I live otherwise I would've gone

[Maryjane]

Lol ANNIE it was very interesting , and makes you realise there are so many problems thyroid included just being swept under the carpet by our Gps. Long term it would work out cheaper for the NHS.

[CLKD]

 .

[andius]

I had blood tests b12 below 200 and my doc got upset and said I needed shots or I might have irreversible nerve damage.  I went to a neurologist and he said take the sublingual pills and get methycobalamin instead of cyanocobolamin as the cyano is not the best active form of b12.  I followed the neurologist advice and take a 5000mg methylcobalamin sublingual tab about once a week and my blood levels stay around 1000. It is a very cheap vitamin.



EDIT.....my pill is 5000 mcg or 5mg  NOT 5000mg

[Annie0710]

Tablets are ok if you don't have absorption problems but sublinguals are definitely better x

[Tempest]

Hello everyone. Annie 0710, i'm so sorry to hear that you're struggling to get help with your B12 deficiency. And you're another 'lucky' one like me who has to carry epi pens, huh? It's not fun, is it? Are you multi medication allergic, like me? My allergy troubles started about 4 years ago, when I entered peri (and before my BSO surgery).   I'd be interested to hear more about your allergy problems, and if they started/got worse since the start of your menopause.

Well, yesterday I went to see the GP. Hubby came with me, as Tuesdays and Wednesdays are his 'weekend' from work. I also phoned the Menopause Consultant's secretary to pass on a message as to what's been happening, and he's on holiday at the moment (it's that time of year)! The secretary said that I clearly need to be seen before my scheduled return appointment in February next year, and that she would email him.

The GP appointment left me feeling a bit low, I'm afraid. I have mixed feelings about what she had to say. She said there was no way she wanted me to start another HRT, and did not even want me to start the vaginal estrogen the Consultant had prescribed, even though I now have very painful symptoms down below even when I go to the loo. I passed on the message that the Consultant's secretary would like her to contact the Consultant to discuss my problems, and she said she would try t o get hold of him next week when he returns from his hols. I understand her wanting to be cautious in case I have problems again, but I didn't think there would have been a problem with the vaginal estrogen?

She also insisted I raise my antihistamine dose again to 20mg cetirizine daily as it might 'keep me calm'. I explained that it actually gives me a very dry mouth at this dosage and that I feel it's making things down below worse too, but she insisted. And she gave me Zopiclone. And wanted me to take more Diazepam. I don't know if it's just me and how I'm feeling at the moment, but this all seems a bit of a 'victorian  mad woman' approach to me, if you see what I mean.  I'm trying to think positively a bit though, and thinking that maybe she's just doing what she thinks is safest for me at the moment until she can get some specialist input. I sincerely hope this is her thinking!

[Tempest]

Oh, and I also wanted to tell you what happened when I did consult Professor Studd by email before all of this recent mess began. I sent him detailed info. as requested, including of course that I'd had TAH/BSO and he replied that he would mail out an RX that I could either get filled privately or take to my GP. I was very the moon!

When it arrived in the mail, he had written me up for Estrogel 3 pumps, Testosterone gel and.......Utrogestan. I phoned his secretary and she said 'oh, he must have made a mistake! Just cross that bit out'. Subsequently, I didn't use this RX as I didn't feel my GP would be impressed....

[CLKD]

He obviously wasn't listening 

As for your GP not prescribing anything for vaginal atrophy, I would go back and sit there until she discussed again!  The whole body dries out as oestrogen levels drop: eyes, deep in the ears, nostrils, skin in general …….. stands to reason that the vagina suffers but it came as a shock  to me, fortunately my GP recognised that the regular urine 'infections' were VA!

If the Consultant has prescribed it then who is she to not agree?  There is very little up-take of the preparation and a LOT of relief achieved!!!!

[dangermouse]

Perhaps you could call or email the consultant's assistant again to ask if they would prefer you to see an endocrinologist so they can check all of your hormones. if they are struggling with what is best for you, they may be keen to pass you on to another specialist so it could be a fast-track way to skip over to someone more thorough, rather than asking the GP who may see this as confusing the situation.

I know how those GP visits can make you feel, especially when you're already feeling anxious. It feels like the most important thing to you and the GP just doesn't want to commit to anything they see as a risk. I remember literally wanting to throw myself at their feet to beg for something to be done, and you feel so demoralised when you leave without what you believe you need.

At worst, perhaps a private consultation with an endo will be worth it, who can then request the tests and prescriptions on the NHS so may just involve an initial consultation fee. I know gynos like Studd are experts in women's health and fertility but a hormone specialist may know so much more about hormone interactions that may not be being being factored in for someone in your circumstances. Just remember, you have choices, the NHS isn't the be-all and end-all.

[Annie0710]

Hi Tempest

I had my first anaphylaxis at 21years old (I'm 50 October)

No one told me it was anaphylaxis just that I had an allergic reaction, I'd been at my nieces bday party and had tuna sandwiches then washed up using gloves (I always used gloves to wash up but hardly ever ate tuna), they told me I was probably allergic to fish (I'm not a fish eater),  they gowned me up ready for tracheotomy as my breathing wasn't good but I did recover and thought no more of it

Weeks later i was back again in A&E with swollen lips after blowing up balloons for my little girl, then again after eating a banana, no one was giving me answers and I became quite scared.  My lovely GP back then called me in, she'd been researching the events and said I'm allergic to latex and cross allergens (exotic fruits), the gum used in some wrappers etc, she gave me antihistamines to keep on me

Then whilst away at Yarmouth I had a tatoo, and told the guy not to use latex gloves, so he padded the area but used the gloves, I was back in A&E with anaphylaxis, having breathed in the air borne proteins from the gloves , I ended up with a really bad chest infection within days so now have to have steroids immediately after the adrenaline jabs

Then about a year before peri I started having breathing problems, I'd developed allergy induced asthma (I was 44), the asthma nurse referred me straight to an allergy clinic where the tests showed I'm sensitive even to water !
Anyhow they said I must carry 2x epipens with me and have steroid jab after every anaphylaxis, I also use inhalers

Since peri started (I'm now post) everything has got worse, but I think I've only had one anaphylaxis since to movicol, but nearly every day I get random lip swelling/eye swelling ones to things I don't have a clue about

I'm sensitive to antibiotics but not allergic

Annie x

[Tempest]

Thank you CLKD and Dangermouse! CLKD, you do NOT want to know how clueless this GP is about VA! It would make you spit!! She said 'oh, it's only a bit of dryness, isn't it'? She's probably in her 30's herself so I'm sitting there thinking 'ohhhh boy! Are YOU in for a surprise one of these days'!

I have to say that I am probably a thousand times worse these days anxiety wise since all of this. One of my most disturbing issues now is waking up with violent shaking in the mornings, and my flushes are worse these past few weeks than they have ever been. I'm assuming this is because my stress is out of control right now? And what makes me saddest of all is that it's now transferred onto Hubby too. He is so worried and frustrated, he is such a good man but he looks really tired and drawn this past week. I keep telling him how sorry I am that he's having to endure this with me, but he's so kind that he says it's really not a problem. He is usually very mild mannered, but when we came out of the GP'S he said 'if someone doesn't do something soon to help you, I'm going to bounce a chair off someones head'! I've never seen him so frustrated, and he's never usually the angry type and certainly not given to acts of violence. Bless his heart. Really.

We're actually discussing Dangermouse where best to spend our money privately. It seems that the nearest private 'Menopause Expert' is actually the guy I've already just seen via the NHS! He practises privately out of the Nuffield here in Glasgow on menopause issues. As I said,  I don't have a return appointment with him via the NHS until February of next year! That is unless we can get a return appointment sooner when he gets the message from his secretary and/or my GP.

Other than that, I will start researching Endocrinologists privately. I think this would be a better choice for me, as you say. I definitely feel I'd benefit from having my adrenal function checked too.

Annie0710, would you believe that you have pretty much the same allergen profile as my dentist?!? Yep, it's true! I always feel in very safe hands with him as he knows all about anaphylaxis first hand, poor guy. It's actually amazing how clueless a lot of health care professionals are about it, and I'm so sorry that you had to go through so much trauma and anxiety finding out the hard way what had actually happened to you and what your triggers are. I had a biphasic reaction to start to Trimethoprim (now you can see why I'm so anxious about not getting VA related UTI'S)! I was referred to the Anaphylaxis Service at the Western Infirmary in Glasgow, and it was discovered that pretty much any drug that causes histamine release could potentially put me into shock. Estrogen via HRT is also a worry too as sudden high rises in Estrogen can cause histamine release, I was warned. So much anxiety causing stuff going on! Aaaargh!!! My BSO surgery was a worry too, as we couldn't use Morphine at all, so had to rely on bolus injections of Fentanyl inter and post operatively which are very short acting and very tricky to judge. Thank goodness the anaesthetist was simply marvellous! I remember he said 'would you mind if I have a few students in theatre? You'll see them when you come in to prep'. I said, no not at all. When I got there, there was about 8 of them! One young guy admitted that they were there as it may be a chance to see how anaphylaxis is handled during anaesthetic, and I was like 'ok. Now I'm REALLY nervous'! I was ok totally with it though, as although I was very anxious that it didn't happen obviously and the anaesthetist was thorough in planning my drugs, I figured that if it did then this was going to be a valuable experience for them to take away that could save a life. Thankfully it didn't happen though! Phew! And yes, I always pack 2 epi pens too. A lot of folk are not up with the guidelines (mainly GP'S - grrrr), that 2 should be carried in case of product failure or biphasic reaction. I must admit I never order both pens at once so that they're not from the same batch in case of product failure that may include the whole batch. I also register mine with the website so that I get an alert on my phone ahead of when they expire so that I can order in plenty of time. It's always good when a pen expires and you haven't had to use it, isn't it?