Private test results: Hi, Following on from my... - Thyroid UK

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Private test results

g0courtney
g0courtney

Hi,

Following on from my previous question I have some blood test results. I've been taking huge doses of Vit D and B12 for months. On 5mg of Carbimazole currently and "biochemically" normal but still suffering with some heart palpitations, breathlessness and WEIGHT GAIN (even though I'm going to the gym and watching food intake). Please, any advice is welcome

6 Replies
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It was a Blue Horizons test 11 I had done

SeasideSusie
SeasideSusieAdministrator

g0courtney

Did you ever have TSI and TRab antibodies tested originally to confirm Graves disease before being put on carbimazole? If not then yet again you have a doctor who is treating without confirming a diagnosis.

Your Thyroid Peroxidase and Thyroglobulin antibodies are raised and confirm autoimmune thyroiditis aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibodies fluctuate and cause fluctuations in tet results and symptoms. You may have been diagnosed with Graves erroneously whilst you were in a "hyper" phase of Hashi's - ie when the hormone levels were high after an antibody attack, as the dying cells dump a load of hormone into the blood which gives low TSH and high FT4 and FT3.

It's possible to have Graves and Hashi's running in tandem but you would still need the Graves antibodies tested to confirm that.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Your Vit D is too low, it needs to be around 100-150 according to the Vit D Council, the Vit D Society and Grassroots Health. What dose of D3 are you taking and in what form? As you have Hashi's it should be an oral spray for best absorption. Are you also taking D3's important cofactors - magnesium which helps the body use D3 and Vit K2-MK7 which directs the extra uptake of calcium to bones and teeth and away from arteries and soft tissues.

Your B12 is too low. Do you have any signs of B12 deficiency - check here b12deficiency.info/signs-an... You should probably get checked for B12 deficency/pernicious anaemia. You would need to come off your B12 supplement for that.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Folate isn't too bad, it should be at least half way through it's range.

Ferritin is on the low side, recommended is half way through range. Eating liver once a week will help raise your level.

Marz
Marz in reply to SeasideSusie

So worrying that we keep seeing members who are being wrongly diagnosed and treated ... do the Guidelines Docs cover this ? How to differentiate between Hyper and Hashi's ? Also is it correct that people should be referred to an Endo if Hyper/Graves is suspected and well monitored ?

My knowledge on this is sparse. 😴

SeasideSusie
SeasideSusieAdministrator in reply to Marz

I have no experience Marz, can only go by what I've read, but there are posts appearing daily that really make me extremely worried about the care of thyroid patients. If we, as patients, can get this information and understand it, how come doctors dont? I know they can't know everything, but the information is there for them to use if they will only admit to not knowing enough.

SlowDragon
SlowDragonAdministrator

Suggest you get TRab antibodies tested

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

Your B12, folate and vitamin D are all still low

Vitamin D - Aiming to improve to at least 80nmol, or perhaps to around 100nmol.

Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement at higher level than you have been for 2-3 months and retest. It's trial and error what dose each person needs.

Once you Improve level, very likely you will need on going maintenance dose to keep it there. Retesting twice yearly via vitamindtest.org.uk

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

easy-immune-health.com/magn...

Presumably your current B12 is sublingual lozenges or B12 spray?

B12 and folate. A daily good quality vitamin B complex with folate in may help improve. Along side your current B12.

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Hidden
Hidden

It is sounding like you have swung from hyper to hypo and it woulf be worth discussing with your doctor stopping the carbimazole for a while to see if you improve. You might pick up again with out it. You are obviously struggling to absorb vitamins so use sprays, patches rather than tabs. I presume you are female.

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