Thyroid UK

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Hi all. Doc wont test for pa .but gave me b12 tabs

Hi again. Seen go today.i went in to asking for pa testing due to b12 was low normal and folate and vit d..

As having hashi i asked before going in b12 can we test for pa and explained symtoms and gave him facts figures and.levels and proved i was low and reasons etc..

Hes answer after a yeated discussion was there is no evidence anywhere in your bloods to sugest pa...

And hes not testing for it but hapoy to give me vit b12 tabs and see if it helps .. if not then mabe he will check or my endo can wyen i see him in 118days time lol . I said..u said i didnt have hi antibodies for hashi and you was wrong.. he just ouaghed and said your antibodies are not very high anyway.. so i think ive taking him to hes level ..i did thro a lot proof at him..and he didnt like.it.. so now do i take the tabs and see what happens?? Or save up to try and get medicheck testing done which i cant aford just yet??

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Spotydave

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Saya854 years ago

Oh for the love of..... Challenging a doctor's ego is never going to end well. Although I can understand he probably thinks youve become a hypochondriac at this stage and doesn't want to give in to every test

Do you have neurological signs of b12 deficiency?

If you have PA, vit b12 tablets will do very little regardless as you won't absorb it properly through stomach and intestines .....

Injeciton or oral spray /sublingual treatment will be much better.

If your symptoms are mild and you are just wanting to rule out PA then you may want to hang on until the endo sees you. Although there's no guarantee he will test you either

If your appointment is 4 months away- you could try sublingual /oral spray b12 for 2-3 weeks and see if your symptoms do indeed improve. If they do you may want to come off for 3 months before seeing endo and then get tested.

Spotydave in reply to Saya854 years ago

Sorry??? No one challenged him the conversation was good. In the end he said im not having a pa test .. yes i have some symtoms... As well as symtoms from thyroid as we all know some are similar..my dad is on b12 injections i have hi antibodies low vitamins .. i said before we start to get the vitamins back up .due to problems with high thyroid antibodies and pa connection can we rule it out. And i showed him plenty of info to view and recommended levels..

Saya85 in reply to Spotydave4 years ago

Lol sorry you misunderstood me- I just re-read what I wrote. It wasn't a criticism at you (!)

The first sentence was directed @your doctors response. I get so exasperated at the way they brush us off. And if they ever feel like they're being challenged they alwsys dig their heels in.

His response to when you showed him up about the antibodies made me laugh.

Spotydave in reply to Saya854 years ago

Hi saya .ive just gone over my questions and noticed i never replied to you lol.. thats ok lol yes he was a bit surprised at the antibodies... Ive just seen a nurse practitioner and she seems much better . She even asked what my t3 was like .. shes also sending me for a scan . So i might stick with her and see what shes like

Saya85 in reply to Spotydave4 years ago

Ahh glad you're getting better care 👍

Spotydave in reply to Saya854 years ago

Hi there well i hope so 😁😁😁. Fingers crossed

Jazzw4 years ago

What dosage B12 did the doctor give you? Good amount, or not enough to raise the B12 of a B12 deficient mouse?

Spotydave in reply to Jazzw4 years ago

Hi jazz...lol Ive put the percription in the pharmacy and will puck them up tomorrow so i will let you know tomorrow.. they didn't have them in stock..

SeasideSusieAdministrator4 years ago

Dave

I have removed your picture, your NHS number and date of birth were showing. Feel free to resubmit without these details, or type in any relevant results.

Spotydave in reply to SeasideSusie4 years ago

Oh dam.. thanks susie i was in a rush and dint nitice i put that one up.. i appreciate that..

greygoose4 years ago

If you think the endo will test for PA, then don't start the B12 supplements. You need to be off them for 5 months to get a base-line and PA test. Besides, you shouldn't just take B12 because the Bs all work together and need to be kept balanced. You would need to take a B complex with them.

Also, what type of B12 did your doctor prescribe? It should be methylcobalamin, but they often prescribe cyanocobalamin, which can be hard to absorb.

Spotydave in reply to greygoose4 years ago

Hi greygoose..i need to look when i get the tabs tomorrow and update u... they wasn't in-stock..so should have them tomorrow... I have no idea if they endo will test for pa..i have looked at my bloods but u dont reslly know to much only from what i have read..it doesnt look obvious that theres a prob. .gp says no evidence at all.. aprt from low normal vit d.vit b12serum ..folate ...and.hi antibodies .. but now im not sure what to so...gp says if b12dont go up on tabs then we will look into it.. i can understand that as if wqs a pa problem surly the tabs wouldn't work. But im not knowledgeable on this ..

greygoose in reply to Spotydave4 years ago

I don't think your doctor can possibly know if you have PA without testing for it. Certainly looking at the vit D won't tell him! What was your B12 result?

I'm not sure about this, but I think that if you are taking B12 - enough of it, anyway - and get a retest, it will show that B12 has risen, because it will show what you've been taking. The test for PA is to come off the B12 and see if the levels drop. PA is when you cannot hang on to the B12, not when you can't raise your levels. So, I think you're on to a loser, there, if that's what he thinks! Or, he's lying through his teeth and setting you up to fail to save money. That's always a possibility!

Spotydave in reply to greygoose4 years ago

Ive put up some b12 results ...Im a bit lost ... At the end of the day i dont want to be positive for pa like all of us i asume. So taking the tabs would be ok ? And then if i stopped taking them asuming my b12 went up ...if it fell away again that could indicate a possible pa problem?? I will put up an nhs test i had for b12.folate .. i do have fbc bloods etc aswell from the same set of tests

greygoose in reply to Spotydave4 years ago

Of course you don't want it, but you do need to test it fairly and squarely to rule it out. If you do have PA, then you are entitled to B12 injections for the rest of your life - I take it you are in the UK? And that costs money, which is probably why your doctor doesn't want to test for it! But, it's a blood antibody test, you can't really go by testing the B12 to see if it's going up or down.

Best to post your results, yes. And tell us what symptoms you have!

Spotydave in reply to greygoose4 years ago

I can only seemto be able to put one pic which is frustrating... I have medicheck b12 and nhs and b12 and nhs fbc ebc etc.. i would say symtoms are better sinse ,going on levo but i do seem to have some symtoms.. tinitus. Eyes no as good as use to be going grey early feeling of shaky hands symptoms often always seem to be all on the right side.. low normal vit d b12 folate lots of symptoms have improved sinse on levo.

greygoose in reply to Spotydave4 years ago

That's the way this site works: one photo per post. But, you could type the results out. Just saying 'low normale' is meaningless.

But, I meant symptoms of low B12. I don't think tinnitus has anything to do with B12. It would be things like pins and needles in the extremities, numbness in feet and hands, peripheral neuropathy, etc.

Spotydave in reply to greygoose4 years ago

Yes im in kent uk

greygoose in reply to Spotydave4 years ago

Oh, I come from Kent! Well, it was Kent when I lived there. Now it's Greater London.

Spotydave in reply to greygoose4 years ago

Where abouts?? Im from se.london originally then just out side blackfen now on the kent coast..... I have found on medicheck just an Intrinsic factor test avalable.. but only antibodies nothing else on that test...

I have put up on here at stary the b12 n folate .. i think medicheck results was a bit worse..

Active b12. 49.700 pmol range 37.50-188.00

Folate ...7.88ug/l range 3.89-26.80

Ferritin 202 ug/l range 30.00-400.00

greygoose in reply to Spotydave4 years ago

Beckenham, just on the edge. Penge was the other side of the road! lol If I remember correctly, that's SE20 - or it was.

Yes, your B12 is low, and it's the Intrinsic Factor test you want.

Your ferritin looks fine, but did you have your CRP tested at the same time?

Spotydave in reply to greygoose4 years ago

Yep good old penge lol i was se9....

Crp 0.33 mg/l range 0.00-5.00

So i could.just get the intrinsic factor test done. Which isnt to expensive with medicheck...

greygoose in reply to Spotydave4 years ago

I'm sure it was SE 20 when I lived there! lol Don't know an SE 9. They must have changed it!

Your CRP is fine, so your ferritin is fine.

Spotydave in reply to greygoose4 years ago

Se9 is eltham se london. Through mottingham ..

So really get the intrinsic done then if that's ok. Then take b12 tabs or spray etc

greygoose in reply to Spotydave4 years ago

That's correct!

Don't know Eltham and Mottingham. I'm not very widely travelled! lol

Spotydave in reply to greygoose4 years ago

Bloody hell grey you dont know eltham.. everyone knows eltham lolol

greygoose in reply to Spotydave4 years ago

lol Not me!

Spotydave in reply to greygoose4 years ago

Hello greygoose i got. The b12 from gp ... They are CYANOVIT B12 1MG TABS

greygoose in reply to Spotydave4 years ago

Useless! Typical doctor prescription. But, before lashing out on something more useful, you do need to do that PA test.

Spotydave in reply to greygoose4 years ago

Hello greygoose Yer i thought so ... Gave me them to shut me up..lol

I will do the the antibodies test ... medicheck so just an antibody check... I dont think i need the full check.. just antibodies...

I think its about £60

Spotydave4 years ago

I cant believe it lol where did u say u are now?

greygoose in reply to Spotydave4 years ago

Whoever that reply was for, they won't see it, because you didn't click on the blue 'Reply' button at the bottom of the person's comment that you were replying to. But, if it's was for me, I'm in France, now. Have been for the past 44 years.

Spotydave in reply to greygoose4 years ago

Lol it was for you... So you. A Frenchy now... How did you end.up over there??? If i can be so nosey 😁

greygoose in reply to Spotydave4 years ago

I ended up here as my reward for being a dutiful, loving wife to a psychopath! That's the short version. The long version is very boring. lol

We came here for my ex's job - originally for a 3 month trial, but I'm still here! He isn't. My kids grew up here, found French partners and had kids of their own, so that's what's kept me here. I couldn't go back, now, because I'm now more French than English - and I hope I never have to! Last time I went back to Penge and Beckenham, was about ten years ago. They had changed so much it broke my heart. It was like visiting a foreign country. Last time I went back to London was even longer ago, and it had changed so much I got hopelessly lost! And I had spent all my formative years wandering around London. My kids said to me 'mum, are you sure you've been here before?' lol

Apart from Penge and Beckenham, I didn't spent much time around that area. For shopping, I always went to Croyden (that's changed, too!). For recreation, I went to London - Soho, Chelsea, etc. So, I never had any reason to go to Mottingham or Eltham. Hence my ignorance.

Spotydave in reply to greygoose4 years ago

Good luck to you. Sounds like you was very sensible...i worked in central london for years and its changed beyond belief and not for the best either in my eyes.. i ended up on the coast for my daugher.she was very young and i become full time mum and dad.. my parents was already here so it fitted to come here for extra help and support.. then i met my current partner and i wouldn't go back to london.. im proud to be a Londoner but i definitely wouldn't go back....ohhh no.. ..

greygoose in reply to Spotydave4 years ago

Totally agree with you! Besides, living on the coast must be wonderful. I miss the sea, I'm very far inland, now.

Spotydave in reply to greygoose4 years ago

I love to be by the sea. Or rivers ... I dont think i could be away from there sea now.we walk to school long the sea front.. its gorgus

greygoose in reply to Spotydave4 years ago

Sounds wonderful!

Spotydave in reply to greygoose4 years ago

Its better than london lol

Spotydave in reply to greygoose4 years ago

Any advise ??? Im struggling today with a real feeling of neck sqeezing ... I can swallow ok.. its just feeling really tight.. got what feels like.presure in my ear had it for a few days..seems to be getting worse sinse meds... and i do get pain sometimes from the thyroid area.. i back off gluten this morning on the start of curting gluten.. also got a niggling cough

greygoose in reply to Spotydave4 years ago

A niggling cough is a hypo symptom. I've had one most of my life! No point going to the doctors with it. They just listen to my chest and tell me there's 'nothing wrong there!' And I said, I know, the cough is coming from my throat. And they just look at me as I'm barmy, and change the subject! Anything that deviates from their idea of the norm completely floors them!

But, I digress. Sounds as if you've got a bit of inflammation, there. It should ease up as your dose increases. In the meantime, have you ever tried CBD oil? That's good for inflammation.

Spotydave in reply to greygoose4 years ago

Hi... Yer hope its just inflammation... The gp has not once felt my throat ir offered a scan. I yave to wait 118 days to see an endo .and this ear pressure feeling doesn't seem to want to go.. it does mske you think worser thoughts.. ice n t tries cbd or anything. Im only on vit d at the min. And going to do infrinsic factor test before i sort low vit b12

greygoose in reply to Spotydave4 years ago

OK, well, it's something to bear in mind, eventually. It does help.

Spotydave in reply to greygoose4 years ago

Definitely . Have you ised.it?? theres so much info to try and take.in.. its like.iodine .. what happens there? Should.u try and.check if you are low are not.. so many people are doing so many different things.

greygoose in reply to Spotydave4 years ago

Well, we're all different, so different things work for different people. But, you really have to be careful with iodine, because it can make things so much worse. And, if you do turn out to have low iodine, it's not as simple as just taking a supplement. You need an experienced doctor to help you with it, and those are few and far between!

I do use CBD every day, yes. I would hate to be without it. I've written several posts on the subject:

healthunlocked.com/thyroidu...

Spotydave in reply to greygoose4 years ago

Hi greygoose yes i thought it was a area not to be messed with . But id guess its rare in the uk due to our hi salt diets..

Cbd sounds interesting... Im definitely struggling at present with the next and an ear ache... I will have a read of what you have written about it...im yhinking of asking the gp if i can up my levo to 100mcg

greygoose in reply to Spotydave4 years ago

It is rare, but not just because of high salt diets - although it does depend on what sort of salt you use. If you use refined table salt (which you shouldn't, it's very bad) then iodine is added to it. But if you use sea salt or pink Himalayan salt, then there's very little iodine. Where most people get their iodine is from dairy products. But, if you are taking thyroid hormone replacement - levo, etc - you will be getting plenty of iodine there, anyway. 100 mcg T4 contains 65 mcg iodine.

How long have you been on 75 mcg levo? If it's more than six weeks, then you should have a retest and an increase of 25 mcg.

Spotydave in reply to greygoose4 years ago

Thats really interesting about the salt and i didnt know there was iodine in the levo.. just shows you what i know lol

Ive only been on 75mcg for about 2weeks.. the gp offered me 100 but i declined i thought it would be better to see if i could get away with 75mcg

greygoose in reply to Spotydave4 years ago

Thyroid hormone is made up of Tyrosine and iodine - four atoms of iodine in T4, and three atoms in T3 - hence the names. As T4 is converted into T3, one atom of iodine is removed and recycled. Which is why you don't need great quantities of iodine.

Get away with 75 mcg? Why would you want to get away with anything? Thyroid hormone is not a drug. Higher doses are not worse for you than lower ones, like drugs. You need to take as much as you need, and it's somewhat unlikely that you would just need 75 mcg. However, I don't think your doctor should have proposed starting you on 100 mcg. A normal starter dose is 50 mcg. 100 might have been too much for you, stressed your system. And, one doesn't stay on a starter dose. You should be retested after six to eight weeks and your dose increased by 25 mcg. And you continue that protocol until all your symptoms have gone. So, even if you'd started on 100, it would be doubtful that you would stay on 100 for long. If I were you, I'd stay on the 75 for four more weeks, then go back for a retest.

Spotydave4 years ago

Thats really interesting about the salt and i didnt know there was iodine in the levo.. just shows you what i know lol

Ive only been on 75mcg for about 2weeks.. the gp offered me 100 but i declined i thought it would be better to see if i could get away with 75mcg

helvellaAdministrator in reply to Spotydave4 years ago

Another name for levothyroxine is tetra-iodo-thyronine - meaning four iodine atoms attached to thyronine. Also why it is so often called T4.

Similarly, liothyronine (T3) is also called tri-iodo-thyronine.

It is the fact that iodine is necessary for our thyroids to make thyroid hormone that confuses so often. If your thyroid is not making any (say, you have had a thyroidectomy), then there is not the same need for iodine. You are taking ready-made thyroid hormone with its intrinsic iodine content.

Spotydave in reply to helvella4 years ago

Wow i admit its a bit deep for me.i think sometime i should not ask myself questions but im an ex london black cabbie and we are bloody nosey..its very interesting though

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