symptoms or not?

[Judyrabbit]

I am so tired of not getting advice from a dr so asking on here about some of my symptoms. My legs ache terribly at night from knee downwards and can become swollen and lumpy. I have eye bags, numb feet gained over a stone and gone up two sizes. I have other things but these are the ones I want to ask about. I’m having a hip replacement in 6 weeks and don’t know if the legs are related to that or my thyroid. I’m also very stiff . I’m sending for private tests but would like to know if others have these things.

[SlowDragon Administrator]

previous post

healthunlocked.com/thyroidu...

Have you now stopped multivitamins

Vitamin D was only 59nmol in November

Are you now taking a daily vitamin D supplement instead

Probably will need daily vitamin B complex. But don’t start any B vitamins until got blood test results back

Test thyroid early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

How much levothyroxine are you taking

Which brand levothyroxine

Do you always get same brand at each prescription

[Judyrabbit in reply to SlowDragon]

yes I have stopped multivitamins and started vit d but am on hols and didn’t bring those. My result of 0.07 was four weeks ago. Dr supposed to be ringing me after three weeks still hasn’t . Will ring on Friday and when he rings am determined to get a face to face. I have suffered for six years now starting with burning feet. I am now terrible. If I can’t speak to him next week will get private tests done. Shouldn’t have to as I’m a pensioner but needs must. My legs are so sore!

[SlowDragon Administrator in reply to Judyrabbit]

Burning feet is peripheral neuropathy…..very common with low B vitamins

You are likely to need to self supplement vitamin B complex daily…..

Test before starting any B vitamins

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 

Very effective 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...

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 is over 500 (or active B12 over 70)

[SlowDragon Administrator in reply to Judyrabbit]

How much vitamin D are you taking (when at home)

Is it tablets or spray

[Judyrabbit in reply to SlowDragon]

sorry for not getting back but have been on holiday. I spoke to dr yesterday about my 0.07 TSH. This was six weeks after the results came back. He told me to lower from 125 to 100 and then retest as if he did it now before lessoning the dosage tge result would be the same. I asked to see an endo but he wants to wait and see the results. I said that I’d spoken to thyroid uk and that I should have full thyroid test and vitamins tested. He agreed to this so could you tell me what I should be having tested so I know what to ask for when I get bloods taken next,

[SlowDragon Administrator in reply to Judyrabbit]

you need to get FULL thyroid and vitamin testing BEFORE changing dose

Never reduce dose based just on TSH

Request GP test vitamin D, folate, B12 and ferritin now

You need to have OPTIMAL vitamin levels BEFORE your operation, especially B12

Test privately if GP won’t do so now

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

Have you ever had thyroid antibodies tested, at diagnosis or since

About 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 and last dose levothyroxine 24 hours before test 

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...

If you can get GP to test vitamins now then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29 

randoxhealth.com/at-home/Th...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

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

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test 

healthunlocked.com/thyroidu...