Results are in...

[scorpiojo]

Hi, can any of you good folk suggest anything... It looks like the red indicates deficiency not sure what to do with that... But I'm not sure about the t s and shape thyroid is in... Any help appreciated Jo 😊

[Jazzw]

Oh boy, your B12 levels are woeful. You either have Pernicious Anaemia or your gut absorption is very poor. No wonder you can't get your thyroid hormones right - your symptoms are as much B12 deficiency as anything else. I think your Vit D level is also one of the lowest I've seen and your ferritin ought to be at least 70. 

How are you still standing up???

[scorpiojo in reply to Jazzw]

I really don't feel well at all.. T3 sparked a slight improvement but I still knackered and weigh twice what I should.... I think I will struggle with gp and don't understand how this has been missed by Endo and gp... They are supposed to make you well 😡

[Jazzw in reply to scorpiojo]

It happens all the time, I'm afraid. I wish I could say it was unusual. 

Make an appointment and show the GP these results. They'll want to test the B12 themselves so don't start supplementing yet. 

And don't worry about jabs or anything like that yet. Your result is low enough for them to start you on a loading dose and you might be fine on the number of injections. If not, there are other things to try. 

[scorpiojo in reply to Jazzw]

being a coward can I get tablets? 😊

[humanbean in reply to scorpiojo]

Your levels of B12 are so low because you aren't absorbing it. You'd have the same problem with tablets. You will have to get some B12 into you in some way that bypasses the gut, and injections are the best way for most people.

People do use other things for B12 supplementation - nasal sprays, oral sprays, patches (I think) - but I don't know anything about them myself.

I think injections would make you feel better a lot more quickly than any other method of taking B12.

You would get lots of advice from the Pernicious Anaemia Society forum here on HealthUnlocked. You'll see plenty of familiar names. There are lots of people who are members of both Thyroid UK and PAS forums.

healthunlocked.com/pasoc

It's well worth joining.

[scorpiojo in reply to humanbean]

thanks I'm going to need to be tested for Pernicious Anaemia I think.. The jabs sound painful but I am guessing I'm going to have to Woman Up and sort it.. Thanks for your help I will look at the other threads.. Jo

[shaws Administrator in reply to scorpiojo]

I have pernicious anaemia and have 3 monthly jabs. They're not too bad and it's only 4 times a year although many feel they need more of them than the NHS provides. You might need to have more frequent ones to bring your B12 up.

[shaws Administrator in reply to scorpiojo]

I am now reading this post and you must be tested for your intrinsic factor to establish whether you have Pernicious Anaemia or a B12 deficiency. Your GP has been very lax.

[Marz]

You need further testing to clarify why your B12 is so LOW.  What has your GP said about these results ?

b12deficiency.info/signs-an...

Please study the above link as much as possible.  B12 that low can become a neurological condition - so read about the additional tests you need.

Ferritin also needs treating .....

[scorpiojo in reply to Marz]

is that not in the BH plus 11 test? Not seen gp and Endo is not until July? Thanks Jo

[Marz in reply to scorpiojo]

....sorry do not understand your reply.  What is in the BH11 test ?

[scorpiojo in reply to Marz]

ferritin was tested at the top I think... Blue Horizon + test I had done... Sorry that it didn't make sense

[Marz in reply to scorpiojo]

Yes I saw the Ferritin result and I said it needs TREATING - as the result is VERY low ...

[scorpiojo in reply to Marz]

I can't now see the nice gp until after annual leave and she comes back on the 31st...bit fed up with that... I'm going to try vit b12 and d tabs and see her asap... I am really quite confused about what I need and that upsets me as I'm not thick I just get overwhelmed..thanks for help I really appreciate it

[humanbean in reply to scorpiojo]

Don't supplement until you have an agreed treatment plan with your surgery. It would really screw things up. Once you start supplementing, testing for pernicious anaemia becomes much harder, if not impossible. You would do better to hold off supplementing and get a diagnosis NOW! You'll regret it later if you don't.

[Marz in reply to humanbean]

hb - am not sure supplementing will affect the anti-bodies for parietal cells and intrinsic factor will it ?  Nor the MMA or homocysteine ?

[humanbean in reply to Marz]

I was always under the impression that homocysteine reduced when B12 supplementation started. I don't know whether the other things would be affected.

en.wikipedia.org/wiki/Hyper...

[humanbean in reply to Marz]

I just found this...

ncbi.nlm.nih.gov/pubmed/115...

I know it is related to pregnancy, but I would have thought it may still be relevant to non-pregnant people? Dunno though, I'm no expert.

I may have got a bit muddled, but if a deficiency of B12 increases both homocysteine and MMA, then supplementing will presumably reduce them. And given the difficulties of getting diagnosed and treated for B12 deficiency and pernicious anaemia I wouldn't want to do anything to reduce my chances. I may just be being paranoid though. I often am.

[Marz in reply to humanbean]

Not at all - I am sure you are right.  Seem to remember something on the PAS forum about supplements not affecting anti-body testing - think it was fbirder.

[scorpiojo in reply to humanbean]

so I need to get tested for the P A and then use vits... That makes sense.. Blue Horizon say they can do other tests on the blood I sent, so I may see if the blood is still ok... If not I'm going to ask another gp.. I can't stay like this until May 31st and my preferred gp... So thyroid issues and P A can happen together? Pernicious Anaemia + P A

[humanbean in reply to scorpiojo]

Thyroid issues are usually, but not always, autoimmune in origin. Pernicious anaemia is autoimmune in origin. Having one autoimmune condition increases your risk of getting more.

So, having an autoimmune thyroid condition and pernicious anaemia together is not unusual.

[Marz in reply to scorpiojo]

pernicious-anaemia-society....

Sorry have not been able to get back to you scorpiojo - we are two hours ahead here in Crete - so off to sleep now.  Am hoping the above link may be of help to you ....

[scorpiojo in reply to Marz]

thanks and night night

[Marz in reply to scorpiojo]

labtestsonline.org/understa...

Reading the above link may help ....

[scorpiojo in reply to Marz]

Thanks 😊

[Clutter]

Scorpiojo,

CRP is an inflammation marker.  Yours is high indicating inflammation somewhere in your body.

TSH >2 indicates your thyroid is struggling to produce hormone.  FT4 and FT3 are low in their respective ranges.  NHS is unlikely to diagnose and treat hypothyroidism until TSH is over range or FT4 below range.  It's quite possible your thyroid levels will improve when your vitamin deficiencies are corrected.

Thyroid antibodies are negative for autoimmune thyroid disease (Hashimoto's).

GP should prescribe cholecalciferol vitamin D3 to correct your vitD deficiency.  You'll need quite high dose for a few weeks/months.  I was prescribed 40,000iu daily x 14 days followed by 2,000iu daily x 8 weeks to raise vitD from <10 to 107.

You are B12 and folate deficient.  GP should start you on B12 loading injections to restore B12 levels and prescribe folic acid to raise folate.  Intrinsic Factor blood test should also be done to rule out pernicious anaemia causing B12 deficiency.  If B12 deficiency is caused by vegetarian or vegan diet you will need to supplement methylcobalamin daily after the injections.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[scorpiojo in reply to Clutter]

I'm dreading going to the GP tbh... I hear on here about not being given enough vit injections? Is there a tablet form? I am on t4 100 & t3 20 so am I getting what I need please? Thanks Jo

[Clutter in reply to scorpiojo]

Scorpiojo,

It's pernicious anaemia patients who may struggle to cope on 3 monthly injections.  You need at least one injection to boost levels, maybe more, and if PA is ruled out you can supplement methylcobalamin sublingual lozenges, spray or patches.

I think you are under medicated to have TSH 3.89.  Increasing Levothyroxine dose will raise FT4 and FT3 and reduce TSH.  Most people on replacement will feel well when TSH is 1.0 or lower.  Read Treatment Options in thyroiduk.org.uk/tuk/about_...

______________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[scorpiojo in reply to Clutter]

So is t3 still ok to take or should that be increased... T4 has made me feel awful on its own or higher..thanks for help

[Clutter in reply to scorpiojo]

Scorpiojo,

If you can't tolerate Levothyroxine increase raise the T3 dose.

[scorpiojo in reply to Clutter]

to 40 mcg? Although I buy the tabs and they come in 25 mcg so could do 45 or 50..

[Clutter in reply to scorpiojo]

Scorpiojo,

1/2 tablet (12.5mcg) equivalent to 37.5mcg Levothyroxine is likely to be enough.

[scorpiojo in reply to Clutter]

is there a link with terrible reflux and my results? Would this hamper any meds I actually take like t3 t4...

[Jazzw in reply to scorpiojo]

Do you take anything for the reflux? Antacids and drugs like Zantac, omeprazole etc, interfere with nutrient absorportion, so cause B12 deficiency (and other nutrients).

[scorpiojo in reply to Jazzw]

I used to have Lanzaprazole but not for a long time... Sometimes take Gaviscon but not for weeks before this test... I struggle on with burning

[Jazzw in reply to scorpiojo]

You possibly have low levels of acid, not high - yes, I know. Sounds mad. But it's common in folk with hypothyroidism. 

[scorpiojo in reply to Jazzw]

How do you find out high or low and how do you remedy it.. Thanks

[MidnightBlue in reply to scorpiojo]

You could try taking a spoon of cider vinegar with your meals.  If your symptoms improve it indicates they were caused by low acid.

[scorpiojo in reply to MidnightBlue]

Thanks I will try that... I'm sure it is vile to do but I will try lol 😁 Jo

[humanbean in reply to scorpiojo]

Remember to dilute the vinegar in a glass of water. And remember to rinse with plain water (don't brush for a couple of hours) after your meals to get rid of any vinegar. I'm assuming you want to hang on to your teeth...

[scorpiojo in reply to humanbean]

phew that sounds better with water... I like vinegar on chips 🍟 but neat worried me lol.. I don't have a fryer etc as only me now... So will buy some vinegar 😊

[SeasideSusie Remembering in reply to scorpiojo]

scorpiojo  I'm a bit late replying, only just seen this. This is the correct kind of vinegar you need

goodnessdirect.co.uk/cgi-lo...

Organic unfiltered apple cider vinegar WITH MOTHER (the Mother is the important bit)

A nice way to use it is to put a dessertspoonful of honey into a cup full of warm water to dissolve it, then add the cider vinegar (work up to a tablespoonful). Drink it before a meal. I use it before breakfast and again before my evening meal (lunch is just a sandwich for something for  me).

[scorpiojo in reply to SeasideSusie]

Thanks for this... I'm so lucky to have found this forum... I have US friends that have confirmed stuff so I do feel supported here in England... Things are so different over in the US ... And I almost feel ashamed of being a Brit where gps are reluctant to help.. X

[scorpiojo in reply to Clutter]

I'm a veggie I eat cheese and eggs milk tho

[Marz in reply to scorpiojo]

Nothing will work well if your B12 and Ferritin are low.  So before you think of increasing T3 then ensure your other levels are good.  Antacids will deplete your B12 etc.

Google for stomach acid tests - I cannot quite remember what you have to do at the moment......

[Jo5454]

Hi,

I've read that you're wondering if supplementing b12 will affect further tests. I would desperately try to get as far as you can with Dr first and see what they can offer. I'm sure it wouldn't affect parietal cell or intrinsic factor, but it could MMA, as the idea is that MMA builds up when you have a b12 deficiency ( as well as thyroid problems or bacterial overgrowth in intestines, but if low levels if other b12 are present like your test, then it seems to be accepted as b12 deficiency), so MMA could lower with supplementation, not giving a true reading. 

Honestly, don't worry at all about the injections, it's the not getting them is the main worry! I've recently paid for an Active b12 test at St Thomas NHS ( postal test) which was bottom of the range and automatically referred for a free MMA test which was 708 when it should've been 0-280 and my serum b12 at the docs was 261, so it shows how way out the NHS range is, I'd have to be under 130 to get treatment, so glad I had the Active B12 test. So eventually after a long struggle I was given the loading dose, but refused anymore than 6 initially even though I have lots of neurological symptoms and have been battling M.E for 17 years. 

Believe me I was petrified of even going to a simple Drs appointment my anxiety was so bad, so the thought of having injections seemed incredibly scarey and impossible! But after 6 I was begging for more as I just started to feel a little better after the 6 th one, so was devastated when I couldn't! So you can see how it's possible to change in 2 weeks! I barely felt them and they only take a few seconds, so please don't worry!

I'm allowed them once a month, but not sure for how long! Probably until I see the gasterenerologist, but I know from reading on here I'll most likely have a battle ahead, so just grab them where you can! plus there's the financial side, my Dr was keen for me to buy standard dose vit. supplements, but as it is they'd have not been strong enough and costly too, whereas if you're declared b12 deficient the injections will be free from the NHS. Lots of people have to supplement between these too, but at least it's a start.

Like you, also have low vit d, and ferritin now bottom of range again since I've stopped supplementing, there def seems to be links with them all. I've also been advised to get these levels all up to ensure better thyroid function as my TSH has gone from bottom of range to nearer the top like yours my F4 has lowered to the same as yours, so it'll be interesting to see if getting these other levels up will help our thyroids!

You'll surely get offered a loading dose fingers crossed, but if you need more ammunition I found the Active B12 the answer in finally persuading my Dr!

Take care and hope you soon get somewhere...

[scorpiojo in reply to Jo5454]

Thanks for reassurance... I'm not going to take anything until I have the pernicious anaemia test so I have the blood counts involved with that.. I apparently need to attend to have more blood taken.. I think that's what you are saying too? So no injections until after blood test😊