Still unwell..now saying low B12 ?

[soozie1964]

Hi everyone..quick synopsis : Diagnosed with Hashimoto's 7 years ago. GP said that having reviewed past notes/tests, that I had probably been underactive for 25 + years ! and that I should have had treatment before then !? I had a very late miscarriage in 1991, which he said was no doubt down to the untreated Hashi's . Took Levo for 4 years..worsening symptoms, high TSH etc...so endo decided that I should go onto T3 only. Took T3 for 2 years..felt no better..new endo put me back on Levo ( 125mcg daily ) Tiredness , brain fog and many other symptoms staying the same . When I saw endo on Tuesday, he said that my Vit B12 has been VERY low for a long long time, and that I need to start taking B12 daily., and he now said that I must have Chronic Fatigue Syndrome, as the Levo should have sorted out my thyroid symptoms. ( last TSH was 9.8 ) ...

I am so upset that nobody picked this very low B12 level. It is obviously linked to Thyroid probs, and had I been told to take a B12 supplement a long time ago, I may have felt better all these years ?

Yet again, seems like the medical profession do not take Thyroid problems seriously, therefore why so many of us are suffering.

I suggested that I may also be undermedicated ? as 125mcg is not a very high doseage ? So He has put my Levo up to 150mcg now, and am taking the B12..will wait and see...

Just one question, if anybody knows..I got Boots B12, which is 10ug daily. But have seen others that are 1000ug daily ? The endo said take 100mcg daily, but am not sure which one would be better ? Guy in Boots said that their one ( 10ug ) is " about 100mcg per tablet " confused ( as usual ) :o(

Thanks x

[SeasideSusie Remembering]

Soozie

What is your B12 level. If you don't know get a print out so you can post exactly what it says, including the range. Depending on your level you may need further testing and B12 injections or you may need 5000mcg B12 or 1000mcg B12.

Do you have signs of B12 deficiency - check here

b12deficiency.info/signs-an...

Guy in Boots needs a brain. 10ug is 10mcg - ug is the symbol for mcg - so obviously can't be "about 100mcg". Instead of talking twaddle they should say they don't know!

[soozie1964 in reply to SeasideSusie]

Hi Susie ( nice name !! ) :o)

Thanks SO MUCH for your reply...

B12 level is currently 200..he said 'normal range is 190 - 900 '

Said mine has been at that low level, and sometimes under 190 for "a long time" ?

He said take 100mcg daily..so I actually need to take 10 of the Boots tabs daily ? !! ( thanks Boots Guy - NUMPTY ) will buy higher dose ones from internet later !

Symptoms are extreme fatigue, muggy brain, buzzing in hands and feet ( like pins and needles but without the 'sharpness' ) , washed out skin , pale, headaches...

I also have Systemic Lupus which I am not medicated for at moment as consultant does not want to put me on immuno suppressants unless I get lots of 'episodes'.

I assumed that all of these symptoms were Hashi's related, and thats why I asked him if its a simple fact of being undermedicated with the Levo..( have been on 125 daily ) He said "no" ..that I should have felt much better by now.?

Then said that I must have CFS, but theres nothing that I can take for that. Then 'mentioned' the long time B12 deficiency !!

Am just fuming about this. Why did nobody pick this up earlier ?

Thanks x

[SeasideSusie Remembering in reply to soozie1964]

Soozie

Seems like your GP is as dumb as the Boots guy - I'm taking no prisoners today - current level 200, has been as low as 190, he should be testing you for B12 deficiency/pernicious anaemia.

List any signs/symptoms you are experiencing from the list I linked to, take them to your GP, remind him that he has already mentioned your "long time B12 deficiency" and ask for further testing. In the meantime don't take any B12 supplements, nor a B Complex or folate/folic acid supplement, testing must be carried out first. My guess is that you will need B12 injections.

You could post on the Pernicious Anaemia Society forum for further advice

healthunlocked.com/pasoc

[SlowDragon Administrator]

Welcome to the forum, very sorry to hear your poor level of care. Sadly it's far from unusual

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

In addition to testing B12 it's essential to test vitamin D, folate and ferritin

Folate especially works with B12 and is often too low

Make another appointment with GP for full testing for Pernicious Anaemia before starting B12 injections.

Or if GP refuses to offer B12 injections then a GOOD QUALITY sublingual B12 eg Jarrow B12 or B12 mouth spray.

B12 can not easily be absorbed in gut. Mouth is best, if not having injections

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

[soozie1964 in reply to SlowDragon]

Thanks so much for the info. Have tried Gluten free..did so for 6 months..no difference, also tried vegetarian..no difference. A friend has suggested Kefir Grains, which I have just using in the last few days..will wait and see . x

[Marz in reply to soozie1964]

If you read the link above from Dr Datis Kharrazian and follow him and read his books - you may change your mind about gluten. Gluten molecules can penetrate the blood brain barrier and create inflammation he says .... it was enough for me to give up gluten and heal my gut. I also have Crohns - or had !

Gluten damage is invisible

[SlowDragon Administrator in reply to soozie1964]

Did you test thyroid antibodies before strictly gluten free and after?

Sometimes that's the only noticeable improvement

It does need to be absolutely strictly gluten free, even avoiding shared butter, toaster, chopping boards etc

Obviously you must get all vitamins optimal too

TSH should be around one and FT4 towards top of range and FT3 at least half way in range

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine (Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also request the Thyroid UK list of recommended thyroid specialists

Absolutely essential to test FT3

[SlowDragon Administrator]

You are legally entitled to printed copies of your blood test results and ranges

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can no longer charge for printing out, (EU rules changed after May 25th 2018)

You need to know results for TSH, FT4, FT3, vitamin D, folate, ferritin too

[greygoose]

Has your dumb endo ever tested your FT3? If not, he can have no idea if 125 mcg levo is right for you. Besides, how does he think anyone is going to feel better with a TSH of over 9? It should be 1 or lower.

But, doctors know little about thyroid - not even endos - and nothing at all about nutrients, so not surprising that your low B12 went untreated. To them, it's 'just a vitamin'. They have no idea!

What exactly is the B12 supplement you're getting from Boots? (Don't trust Boots!) Is it sublingual methylcobalamin? If not, it's not the right one, and you'd be better off getting your supplements on Amazon, rather than Boots!

[soozie1964 in reply to greygoose]

Hi, thanks for replying...Endo categorically refused to test my FT3...I did ask, but wasn't done. When I questioned why he thought a reading of over 9 was 'ok'..he said " i have several patients with readings over 300 " .. to which I replied " Frankly, I don't care about your other patients, I am here to discuss ME and how I feel !!! " - he didn't like that ! :o) I have also asked about NDT..you can imagine his reply !!!

Yes, after this weeks visit, I am now at the stage where my hubby is insisting that i have a private consultation, and pay for every test that may be needed ! I really shouldn't have to, and count myself extremely lucky that we can afford to do so , but seems like nobody is doing their best for me ( as many others with thyroid probs ) .. it seems like " oh, dodgy thyroid..have some levothyroxine..it works for everyone..you're all the same " !!! ARGGHHH !!!

Have been checking out the Boots brand..seems like it's pretty rubbish ! it is cyanocobalamin ? .. not the Methylcobalamin. Will go onto Amazon later and order that one..

Am with a new GP surgery now, so am making my first appointment to get new higher prescription for the levo..will ask for the blood tests suggested ( vit D B12 Ferratin & folate )

Thanks so much .will keep you posted.

Soozie x

[humanbean in reply to soozie1964]

he said " i have several patients with readings over 300 "

He keeps corpses?

[Marz in reply to humanbean]

... possibly several

[soozie1964 in reply to humanbean]

Haa, Humanbean... I certainly do..I'm an undertaker x

[greygoose in reply to soozie1964]

Either he's lying or he didn't understand the question, because no-one with a TSH of 300 could possibly be considered to be well. It's just not possible. Not even a dumendo could think that.

As I said, I don't trust Boots!

[soozie1964 in reply to greygoose]

Hi, He said that because I said I thought 9 was high...he was basically saying " that's not high, I have several patients over the 300 level " x

[greygoose in reply to soozie1964]

He's still evading the point, I feel. 9 is not high for a diagnosis test - although decidedly hypo. And I would imagine the people with TSH of 300 were that on diagnosis. But, you are on thyroid hormone replacement, so the comparison is invalid.

However, if he has patients he's treating that still have a TSH of 300, then that is of great concern, and you should leave this endo immediately!

[Angel_of_the_North in reply to soozie1964]

Gosh, if he has patients with TSH over 300 and thinks they are well or that is satisfactory, you need to run away FAST!

[SeasideSusie Remembering in reply to soozie1964]

" .. to which I replied " Frankly, I don't care about your other patients, I am here to discuss ME and how I feel !!! "

Ha ha - back of the net! Well done you!