I decided to book an appointment with a private endo and he listened and talked to me then said he wanted about 8 blood tests done! Today I had to go to drs about another problem and gave them the letter from the consultant asking for the bloods. I was told most of them had been done and were within the range so wasn’t my thyroid. ( The last test was done at 8pm on Sunday night in A&E) She agreed to do tge tests but is sure they are fine even though I have lots of symptoms!! She said my burning feet was probably peripheral neuropathy even though I told her the nerve specialist said it wasn’t. If she thought it was that why don’t they gsive me some kind of treatment. I have found that if you mention this group they don’t like it and don’t agree you can have symptoms if your bloods are in tge norm. My TSH was 0.57 last time!!! What are we supposed to believe?
what more can I do?: I decided to book an... - Thyroid UK
what more can I do?
Not fun, is it, trying to navigate our way to good health care. 
The NHS isn’t obliged to run blood tests that a private endo has asked for, so that was possibly where the hostility began. But it’s simply not on for them to disregard the outcome from your appointment with the nerve specialist. GPs aren’t specialists, that’s the whole reason we’re referred to those who know better!
What other blood tests are you having done?
Very important to test thyroid levels early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test
How much levothyroxine are you taking
Which brand
What vitamin supplements
ESSENTIAL to test vitamin D, folate, B12 and ferritin
Please add any results and ranges
Suggest you get full testing privately
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) 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/testing/priva...
she did agree to do the tests now it’s just getting an appointment.
My last tests in September were
TSH …..0.57mU/L
Free T3…….4.7pmol/L
Free T4………17.3pmol/L
Magnesium ….0.87mmol/L
March
Ferritin…….46.0ug/L
Folate…..4.3ug/L
B12……..356.0ng/L
My symptoms are
Burning feet since 2014
Restless legs and cramps
Joint and muscle aches
Anxiety (Citalopram)
Weight gain
Dry itchy skin
Stomach problems (Lanzoprazole)
Low temp, low heart rate
Brittle nails and finger nails lifting
Eyes blurring (drops for dry eyes)
Deafness and tinnitus (hearing aid)
Ovarian Cyst
Allergic Rhinitis ( Nasal spray)
Most of these symptoms can be attributed to Hypothyroidism
Free T3…….4.7pmol/L
Free T4………17.3pmol/L
Please add ranges
What time was test
How long was last dose before test
Ferritin…….46.0ug/L
Folate…..4.3ug/L
B12……..356.0ng/L
These are all far too low
What vitamin supplements are you taking
B12 and folate
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
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
Highly effective B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
In-depth article on different forms of B12
perniciousanemia.org/b12/fo...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
perniciousanemia.org/b12/le...
And why aiming to keep B12 over 500 recommended
perniciousanemia.org/b12/le...
Great reply by @humanbean on B12 here
healthunlocked.com/thyroidu...
Low folate
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
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Post discussing different B complex
healthunlocked.com/thyroidu...
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 can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 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
Post discussing how biotin can affect test results
No vitamin D test?
Test yourself here
NHS private testing service
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
How much vitamin D are you taking
Cramps often low magnesium
Are you taking a separate magnesium supplement, daily, afternoon or evening…..at least 4 hours away from Levo
Web links about taking important cofactors - magnesium and Vit K2-MK7
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Recipe ideas
bbc.co.uk/food/articles/mag...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
Ferritin…….46.0ug/L
Far too low, especially with restless legs
All restless legs patients are advised to maintain ferritin over 100
And to supplement magnesium
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking any iron supplements stop 5-7 days before testing
Medichecks iron panel test
medichecks.com/products/iro...
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Good iron but low ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Shellfish and Mussels are excellent source of iron
healthline.com/nutrition/he...
Iron deficiency without anaemia
healthunlocked.com/thyroidu...
Ferritin over 100 to alleviate symptoms
Burning feet since 2014 - frequently linked to low B12 and/or low magnesium
Restless legs and cramps - same
Joint and muscle aches - low vitamin D and/or low Ft3+
Anxiety (Citalopram) - common hypo symptom
Weight gain - common hypo symptom
Dry itchy skin common hypo symptom
Stomach problems (Lanzoprazole)
Most hypo patients have LOW stomach acid
Thousands of posts on here about low stomach acid
healthunlocked.com/search/p...
Web links re low stomach acid and reflux and hypothyroidism
nutritionjersey.com/high-or...
stopthethyroidmadness.com/s...
thyroidpharmacist.com/artic...
How to test your stomach acid levels
healthygut.com/articles/3-t...
branchbasics.com/blogs/food...
meraki-nutrition.co.uk/indi...
huffingtonpost.co.uk/laura-...
lispine.com/blog/10-telling...
Useful post and recipe book
healthunlocked.com/thyroidu...
Protect your teeth if using ACV with mother
healthunlocked.com/thyroidu...
But never assume you have low stomach acid
healthygut.com/4-common-bet...
Ppi
Omeprazole will lower vitamin levels even further
gov.uk/drug-safety-update/p...
webmd.com/heartburn-gerd/ne...
pharmacytimes.com/publicati...
PPI and increased risk T2 diabetes
gut.bmj.com/content/early/2...
Iron Deficiency and PPI
medpagetoday.com/resource-c...
futurity.org/anemia-proton-...
onlinelibrary.wiley.com/doi...
sciencedirect.com/science/a...
Low temp, low heart rate - hypo
Brittle nails and finger nails lifting - low B vitamins
Eyes blurring (drops for dry eyes)
Deafness and tinnitus (hearing aid) - tinnitus low B12
Allergic Rhinitis ( Nasal spray) - dairy intolerance……very common to develop gluten and/or dairy intolerance
Thank you for your reply this group is so helpful. I’m having fasting blood tests done in the morning and see the consultant on Dec 12 th. Vitamins have never been mentioned to me so I don’t take supplements so I think that could be a lot of my problem. I know the range for my Vitamin D is 50-150 and mine the only time it’s been done was 59 and last time 55 which is just inside range but tge dr says it’s in normal. Also ferritin used to be in the 2 00-300 s and last time it was 46 but ‘it was in the limit’ she said. Hopefully the endo will explain more and how much to take. It would be wonderful if that was the problem . Thank you so much for your info
mine the only time it’s been done was 59 and last time 55 which is just inside range but tge dr says it’s in normal.
It’s “Normal” because it’s within range …..but on levothyroxine we need vitamins at GOOD levels
Vitamin D minimum 80nmol
Serum B12 over 500
Folate at top of range
Ferritin at least over 70
Hopefully the endo will explain more and how much to take
Very unlikely endo will be interested either. They generally also only test for vitamin deficiencies
Patients have learnt the hard way …..
you will see thousands of posts on here discussing vitamin levels
Thank you. I’m having bloods done tomorrow, nothing to eat or drink he said after midnight, tested at 8.40 am. See endo mid December so won’t start vitamins till after I’ve seen him.
Come back with new post once you get results
Personally I would start vitamin supplements now, after blood test
U.K. government recommends EVERYONE supplements vitamin D as a minimum start of October to end of April
gov.uk/government/publicati...
Likely to need at least 1000iu daily
With thyroid disease most people find they need to supplement all year and at higher dose ….usually 2000iu-4000iu daily
Common to need higher dose in winter than summer
Add separate magnesium supplement after 2 weeks
And 2 weeks after that start a separate B12
And a week later a separate vitamin B complex
Meanwhile significantly increase iron rich foods in your diet
Judyrabbit,
Try supplementing magnesium for burning feet and restless leg syndrome. I suffered both and have managed to quell symptoms with use of magnesium, also other electrolytes.
It’s getting more difficult to get prescriptions for T3
My Endo didn't listen to me, what do I do?
What can I do
Brand issue with levo. What can I do?
