Hashimotos and numbness

[LouLou-21]

diagnosed with Hashimotos in April and on 100 Levo. TSH and T4 in lower range but still whole body numbness, scalloped tongue and muscle aches in centre of back and stiff neck. GP adamant I’m clinically in range. Refused to test T3 and despite negative MRI prefers to consider pursuing an MS diagnosis if symptoms don’t improve. Advice please!

[SeasideSusie Remembering]

LouLoyu-21

"Clinically in range" means just that, your results are in range, but that doesn't mean that they are at optimal levels for you to feel well.

What are your results? Can you please post them along with their reference ranges (ranges vary from lab to lab so it's important that we see the ranges as well as the results).

We are legally entitled to our results here in the UK so your surgery may offer online access in which case you can register for this and see your results there. If your surgery doesn't offer this then ask the receptionist (not the doctor) for a print out of your results.

As you can't get FT3 tested as well then you might want to consider what hundreds of us here do and that is a private test which you can do at home by fingerprick.

If all you want is TSH, FT4 and FT3 then the cheapest option is an NHS lab at Exeter Hospital which offers this test to the general public for £26.10 with code here:

thyroiduk.org/help-and-supp...

It not already done then we suggest full thyroid/vitamin testing to include

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

We always suggest testing nutrients because optimal levels of these are necessary for thyroid hormone to work properly.

If considering this test then check out

Medichecks ADVANCED THYROID FUNCTION medichecks.com/products/adv...

Check this page for details of any discounts: thyroiduk.org/getting-a-dia...

or

Blue Horizon Thyroid PREMIUM GOLD bluehorizonbloodtests.co.uk...

Check this page for discount code thyroiduk.org/getting-a-dia...

Both tests include the full thyroid and vitamin panel. They are basically the same test with just a few small differences:

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.

Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12.

Always advised here, when having thyroid tests:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day.

In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:

healthunlocked.com/thyroidu...

If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Nothing to eat or drink except water before the test - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Certain foods may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Come back with results/ranges for us to comment further.

Also, do you take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected.

[SlowDragon Administrator]

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

GP should do coeliac blood test, if not already done and not already on strictly gluten free diet

Only 5% of Hashimoto’s patients are diagnosed as coeliac, but further 80% find strictly gluten free diet helps or is essential

So it’s always worth trying gluten free, but get tested for coeliac first

When were vitamin levels last tested

Extremely common to need to supplement to maintain OPTIMAL vitamin levels

Are you vegetarian or vegan ……if yes, likely low B12, iron, ferritin unless testing regularly and supplementing as required

What age are you approx?

[LouLou-21 in reply to SlowDragon]

Late 50s. Yes vegetarian and gluten free and supplements B12, iron, magnesium, D and K.2. Brand is Almus and same each time. Is the all over numbness usual?

[SlowDragon Administrator in reply to LouLou-21]

What were most recent vitamin results

Never supplement iron without getting full iron panel test 2-4 times a year

Iron vitamin D and magnesium must all be minimum 4 hours away from levothyroxine. Iron at least 2 hours away from all other supplements except vit C

As you have B12 supplements it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

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

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

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 methyl folate supplement as well as separate B12

[LouLou-21 in reply to SlowDragon]

Yes I time this carefully. Magnesium 0.6, folate 20, B12 270, ferritin 14

[SlowDragon Administrator in reply to LouLou-21]

What’s the range on B12

Is it NHS test - serum B12 ?

Range is typically 15-680

Or private test for active B12

Range is typically 30-150

[SlowDragon Administrator in reply to LouLou-21]

Get vitamin D tested

Test vitamin D twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

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...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

[SlowDragon Administrator in reply to LouLou-21]

B12 270

If this is serum B12 it’s far, far too low

Were you supplementing before this result

What B12 and what vitamin B complex are you currently taking

[arTistapple in reply to LouLou-21]

“All over numbness”.? You have been given great advice on how to take all this forward but so far I think no-one has replied to this issue. Maybe you could describe it a bit more. Different people have possibly conflicting and individual ways of describing the same thing. Actual symptoms vary in manifestation, combination, number etc. Hypothyroidism is a very “broad church”. I can immediately think of another way of describing at least a similar sensation but it would be putting words in your mouth. Think about it and put it out in the forum again. Someone may recognise it from your description or an alternative description you may come up with.

[LouLou-21 in reply to arTistapple]

Thanks I know! Great advice right. Numbness like anaesthetic at the dentist is the nearest I can think of. Worse in my face, head, mouth and hands and feet, arms and legs but pretty dulled sensation everywhere else. Sometimes feels like when you have slept on an arm

[arTistapple in reply to LouLou-21]

Yes I recognise the face and mouth pretty clearly. I can sometimes feel a lack of control of my body but I think of it more as a paralysis which is not an actual paralysis. Sorry if that sounds weird. It tends to be a passing sensation for me. It’s not a constant presence. I get it when I am very stressed. It’s like my nerve ends have given up the ghost, whilst also making themselves known. Whether because I have a situation when I am indeed stressed but disconcertingly when I think I am ok too. I am assuming those are the times when I have done too much and with my inability to replace my T3, it has just run out. I am not on T3 but I am thinking I need that help. I have no choice but to stop what I am doing (sometimes for days) and allow my body to recoup. It’s blooming annoying but so far I have been unable to change that. I am still not doing brilliantly but better than I was. I also have all the muscle issues you mentioned and possibly more. Try telling all that to a doc! It’s the very essence of what they don’t want to know, far less understand. I hope this is of some use to you.

[LouLou-21 in reply to arTistapple]

Thank you. I hope you find something which works for you. Stress makes things worse definitely. I feel the numbness is connected as it initially improves when my dose is increased but the doctor doesn’t so it is reassuring to hear.

[arTistapple in reply to LouLou-21]

This seems to be a pretty common outcome dealing with doctors. Hence this website/forum. Thank goodness.

[SlowDragon Administrator]

Ferritin 14

Ferritin is deficient

When was this test

Did GP do full iron panel test after this result

EXACTLY What iron supplements are you currently taking

cks.nice.org.uk/topics/anae...

In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Look at increasing iron rich foods in diet

Extremely difficult to do this on vegetarian 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

dailyiron.net

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked

preventmiscarriage.com/iron...

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...

As vegetarian likely to need ongoing iron supplements

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

Medichecks iron panel test

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Good explanations of iron

theironclinic.com/iron-defi...

theironclinic.com/ironc/wp/...