New to PA forum

Hi I have come from the Thyroid UK forum, I am looking to be tested for PA. Doctors have put me on Fluoxetine (depression) and Diazepam (muscle spasms), just wondering if they are necessary?

Folate - 1.6 (2.5 - 19.5)

Ferritin - 58 (15 - 150 premenopausal females, 30 - 400 postmenopausal females)

Vitamin B12 - 192 (180 - 900)

Symptoms:

Joint stiffness and pain (unchanged with painkillers)

Muscle twitches

Dry eyes (since 2011)

Eczema (since 1993)

Heavy periods (ever since I started them 15 years ago)

Cold feet and hands

Pins and needles

Muscle cramps

Breathlessness

Sore tongue

Hair loss

Constipation

Deafness (since 2015)

Ears getting random ringing noises in them

Dizziness

Unsteadiness on feet - can't even stand still when standing up straight

Cold intolerance

Tiredness

Low heart rate

Difficulty swallowing

Thank you

19 Replies

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  • Hi JLC

    Your levels are very low and, with the serious neurological symptoms you've described, I hope GP is treating you with B12 injections urgently as per BNF/BCSH guidelines in the pinned posts on the right hand side of this site:

    "The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement."

    However, few GPs understand PA/ B12 deficiency, so it would be a good idea to go armed with your list of symptoms and information, in case needed. It might also be as well to take someone close to you for support, to ensure these results and symptoms are taken seriously. Without wishing to alarm, the longer you are left untreated, the longer it will take to recover and greater the risk of permanent damage.

    To start with, here are some helpful sites you may not have seen:

    b12deficiency.info/what-to-...

    b12deficiency.info/b12-writ...

    cmim.org/pdf2014/funcion.ph... :

    The above latest UK research document has a useful summary and important information re. blood tests - bottom of page 4 under 'how is response to treatment assessed'.

    Hashimoto's and PA are both autoimmune diseases, with symptoms overlapping, and many researchers believe the source is 'leaky gut', so following a gluten free diet usually helps.

    I notice folate is also low but it is better to wait until B12 has reached a higher level before supplementing this as, without sufficient B12, folic acid gets trapped, builds up in the blood and can make neurological symptoms worse.

    I hope you aren't unnecessarily alarmed by all of the above because you will also see from the pinned posts that, if early and adequately treated, many people do recover.

    I hope all goes well for you.

  • Hi Polaris,

    Have read your reply to JCL and found this most helpful. In fact the most helpful information I have seen on this forum so far. Thank you.

  • Hi JLC89

    I have many similar symptoms to yours and my GP never thought of investing PA although I pass out. Good luck with your investigation and do hope you'll be feeling better soon.

  • I really hope your GP will listen and adequately treat you too JGBH - I never cease to be horrified at the lack of understanding and unwillingness of GPs to try such a simple, cheap treatment.

    There seems to be a frightening lack of awareness of how many people are showing the varied symptoms. A neighbour's daughter was continually passing out - it was only when she mentioned being coeliac, hypothyroid and diabetic that I began to wonder whether this was happening to her too! It is so sad when the consequences of being fobbed off without looking at a person's history and symptoms as a whole can be so devastating.

    Best wishes for the right treatment for both of you.

  • Thank you

  • Many thanks Polaris. Indeed I had my thyroid removed in 1980 and that thyroxine replacement. Have autoimmune problems: Rheumatoid arthritis, fibromyalgia sjogren syndrome... One would think any slightly decent GP would e more aware and keen to help! Had to do all my research and asked to be referred privately to an endocrinologist, a cardiologist and recently a neurologist AND demanded to be referred to the local hospital ENT department which was at first refused by stupid GP! Thanks again.

  • I'm so sorry it's been such a stressful battle for you - just what you need, I don't think!

    Re. doing our own research, the best books I've come across on the autoimmune connection are Dr Datis Kharrizian's, "Why do I still have Thyroid Symptoms, when my Lab Tests are normal" and, "Why isn't my Brain Working". He teaches post graduates but the books are highly readable to the layman.

  • Thank you so very much Polaris. Will find these books and see if the advice can make any difference. Incidentally, do you know where Dr K Kharrizian teach?

  • He is based in the US. His books and website will help you so much.

  • There is an on-line Summit starting on Wednesday presented by Dr Tom O'Bryan who did the Gluten Summit around 2 years ago. There will be around 80 people presenting - the Summit is called Betrayal and is all about Auto-immune conditions. I already follow quite a few of them with their Newsletters/blogs.

    Dr Datis Kharrazian is speaking along with other experts.

  • Where can I follow the Summit? Thanks again.

  • Am on my phone so am not able to do the link. Google Dr Tom O'Bryan and the Summit - Betrayal. That should find it. Let me know if you cannot find it and I will send a link later.

  • Thanks again. Will check and if unsuccessful will let you know. Your tips are much appreciate. X

  • dd340.infusionsoft.com/app/...

    Here's the link JGBH 🙂

  • I have signed up for this Marz - looks as though it will be really interesting - I think it starts today 🤗

  • Thanks for that. Yes I have too and yes it starts today 😊

  • Not sure whether anyone has posted it already? I've just tried to but , for some reason, it won't accept my post 🤔 Maybe, you'll have more success Marz?

  • The link you posted is working Polaris

    😊

  • Thanks for info Marz.

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