Empty sella but not sure about my thyroid!

Hi there I am 42 and have been having what I thought was perimenopause symptoms for a good few years now. My main symptoms were chronic headaches and fatigue also some muscle twitching. I was sent for an mri on my head to see what was going on and it suggests an empty sella so to me that would mean my pituitary gland is flat. They did some blood tests to which shown up my b12 was extremely low and my thyroid tests came back abnormal but they said they were satisfactory. Everything has basically been ignored and I am trying to figure it out myself any help or advice would be greatly appreciated thanks.

[SlowDragon Administrator]

Welcome to the forum

Please add your results and ranges

Who organised MRI …..GP or endocrinologist

Obviously low vitamin levels need addressing

Low vitamin levels are extremely common when hypothyroid

Are you in the U.K.

If Pituitary is not working correctly it’s absolutely essential to test Ft4 and Ft3

You will also need adrenal testing for Addison’s disease

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once 

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Normally approx 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease 

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

[Hidden in reply to SlowDragon]

The last test results I had done were in 22 and they just focused on the b12 which was 139ng/L my tsh was 0.009mU/L and my t3 was 16.8pmol/L Also my c reactive protein was 49.9mg/L I was sent for the scan by my gp. Then I saw a neurologist which was a waste of time she basically said if my eyes were not hurting the empty sella was fine and that I had fybromyalgia because my dad has it. Which is a load of rubbish. I am currently supplementing my b12 at the moment myself. I was referred to a rheumatologist nearly a year ago but every appointment they have given me was cancelled so I am avoiding doctors and hospitals if I can help it and trying other methods.

[SlowDragon Administrator in reply to Hidden]

they just focused on the b12 which was 139ng/L 

What was the range

Are you vegetarian or vegan

Were you tested for Pernicious Anaemia before starting on B12

Low B12 symptoms 

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week 

B12 drops 

natureprovides.com/products...

Or

B12 sublingual lozenges 

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay 

Other options 

healthunlocked.com/thyroidu....

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until serum B12 over 500

[Hidden in reply to SlowDragon]

Normal range is 203ng/L considering I had them done in 2020 and they were 287ng/L but I was also on the pill since an early age and came off it in 2020. Which makes me wonder if that was covering up some symptoms etc.

[Hidden in reply to Hidden]

Sorry meant to say I am not vegan.

[SlowDragon Administrator in reply to Hidden]

So B12 was far too low back in 2020

NHS only tests and treats vitamin deficiencies

[SlowDragon Administrator in reply to Hidden]

Recommended that all thyroid blood tests early morning, ideally just before 9am

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...

Always get full testing BEFORE considering booking any consultation

Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors (including at least one pituitary specialist who does consultations on zoom)

[e-mail]

roughly where in U.K. are you?

Get full thyroid and vitamin testing done via Medichecks or BH At least annually

Essential to maintain optimal vitamin levels

[Hidden in reply to SlowDragon]

Thank you so much for the advice. Very much appreciated.

[helvella Administrator]

Have a look here:

Empty Sella Syndrome

Empty Sella Syndrome is a condition where the bony cup the pituitary gland sits in (the sella turcica) appears empty when scanned. The pituitary gland may appear flattened or shrunken. Many people have no symptoms, whilst others require hormone replacement therapy.

pituitary.org.uk/informatio...

Regarding B12, suggest you join and read up here:

healthunlocked.com/pasoc

And post if you want B12-specific help.

Do you have actual test results?

If so, please post here - including reference intervals (ranges). If not, get hold of them. Many in England can get them from the NHS app (or similar). All should be able to get them from their GP surgery and any hospitals by whom they have been seen. (Results often don't follow the patient so you might have to do some work to get hold of them.)