Endo or surgeon ??

[jib70]

Hi - So sorry to be a nuisance I have posted before but I don't seem to be getting anywhere with my problem so hoping for advice here.

I know I have a multi nodular goitre, had it for 20 or so years. Lost nearly 2 stone in last 18 months but seem to have stabilised now.

Ultrasound showed sub (or retro) sternal growth and I get wheezing, difficulty swallowing and discomfort for last year or so. On list for last 3 months for endo appt. via GP.

I really want to ask if this long waited for endo appt is necessary - should GP just refer me to surgeon?

Not on any thyroid meds but after two private bloods taking 1000mcg cyancobalamin pills + B12 spray daily for several weeks now but frankly I really don't feel good. Very concerned about my memory and ability to get on with my life now. I am 70 but always active and involved, now I'm starting to feel incapable - extra stressed, fatigue and many physical symptoms. Feel I just want to shut down. Is it my age, is it my thyroid, is it my B12/VitD??

Grateful for any suggestions. Thanks. j x

[Valarian]

Has the GP ordered any thyroid function tests ? At this stage, probably TSH and FT4 ?

Are you on (or have you ever been) prescribed any thyroid medication ?

[jib70 in reply to Valarian]

Thanks Valerian. Not on any thyroid meds. Gp did tests early August -

TSH 0.076 (0.27-420) -- Comments "Suppressed but normal"......

Free T4 14.2 (12.00 - 22.00)

Many years ago prescribed carbimazole by GP for several months then taken off it, not a clue why. Nothing since. Sorry I can't offer more detail.

[SlowDragon Administrator]

These are the original results from before starting any supplements

healthunlocked.com/thyroidu....

Results show low TSH and low FT4. Usually with low FT4, TSH rises.

TSH could be low because vitamin levels are so low

Or because temporary Hashimoto's flare

Or some degree of central hypothyroidism

High TPO antibodies confirm you have Hashimoto's, also called autoimmune thyroid disease. But they should perhaps also test for Graves antibodies

Vitamins

Extremely low B12 and borderline folate

Did your GP test off Pernicious Anaemia after seeing these results?

Surprised you were not offered loading B12 injections

Adding a good quality daily vitamin B complex, one with folate in not folic acid, eg Igennus Super B complex may be beneficial

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...

Vitamin D definitely needs improving to at least 80nmol

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Perhaps just vitamin D mouth spray on its own. Not one with vitamin K2 Mk7

Do NOT supplement any vitamin K if you take any blood thinning medication including aspirin

drsinatra.com/vitamin-k2-su...

You need to see an endocrinologist because it's likely you need Levothyroxine, eventually, even if not yet

[jib70 in reply to SlowDragon]

Thanks SlowDragon. After taking those VitB12 supplements my recent private tests are -

TSH 0.153 (0.27-420)

Free Thyroxine 14.90 (12.00-22.00)

Free T3 5.82 (3.10-6.80)

Thyroglobulin abs <10 (0.00-115.00)

TPO antis 97.2 (0.00-34.00)

Active B12 63.1 (37.50-188.0)

VitD 50.9 (50.00-200)

Not taking a VitB complex. just the straight orals and the spray. I think I am absorbing the B12 since it is now higher?. First GP suggested loading injections but second GP prescribed pills instead.

I haven't taken VitD as not sure which to take, any help appreciated there. Actually any help with vits gladly received, as I recall you saying previously it was important to get vit levels up to help.

Have been gluten free for a few months now also.

Thanks for your help. j

[SlowDragon Administrator in reply to jib70]

Because B12 was so low, would suggest you try adding a good quality daily vitamin B complex

This supplements all other B vitamins as well as B12 and can help keep everything in balance. Usually recommended on here

Perhaps reduce one of your B12 supplements slowly

Vitamin D mouth spray by Better You is good as avoids poor gut function.

Suggest you supplement 1000iu or 2000iu 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

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement vitamin D October to April

gov.uk/government/news/phe-...

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...

Do NOT supplement any vitamin K if you take any blood thinning medication including aspirin

drsinatra.com/vitamin-k2-su...

Good you are now gluten free. Did you notice any improvements giving up gluten?

[jib70 in reply to SlowDragon]

Much appreciate your suggestions SlowDragon. Will get the VitD spray now. What B complex would you recommend as I don't know which to take, I find it all so confusing

I do not take any blood thinning meds, aspirin doesn't agree with me anyway.

It hasn't been difficult for me to go gluten free., but the only plus I've noticed is less bloating. At one time looked like I was several months pregnant !! at my age !!!

Thanks for your help. j

[SlowDragon Administrator in reply to jib70]

Personally I prefer Igennus Super B complex. Full dose is two tablets per day. Good quality ingredients, small tablets and doesn't turn your pee fluorescent yellow (!) like many others do. Suggest starting with just one tablet per day, taken in morning after breakfast. B vitamins can make you feel a bit wired initially

I find just one tablet a day is enough

Other popular B complex are Thornes or Jarrow B-right. Both are large capsules.

Lots of people find gluten free improves bloating

[jib70 in reply to SlowDragon]

Thank you so much SlowDragon, your help and advice is much appreciated.

[Helsan]

Had thyroidectomy due to growths was referred to surgeon. He then treated with T4 for few years and I was really ill. Gp wouldn’t refer to nhs endo as he said clinic was closed to new patients went private. Now on T3/T4 prescribed by Gp as I wrote to clinic and was told they’d never been closed so followed private recommendation. I have conversion issues identified by endo and supported by DIO2 gene test.