Sudden jerks, specially at bedtime.

[Alejandrita17]

Hello!

Does anyone experience sudden jerks due to hypo, even when TSH is "in normal range"? Jerks are similar to those you experience when trying to fall asleep. They call them "myclones".

Thanks a Lot!

[SlowDragon Administrator]

Previous post shows you were under medicated and dire vitamin levels 6 months ago

Especially ferritin at just 8

humanbean or SeasideSusie may pop along re dire ferritin and how long it can take to improve

healthunlocked.com/thyroidu...

What dose levothyroxine are you now on

Presumably you have been working on improving extremely low vitamin levels too

Please add most recent thyroid and vitamin results

[Alejandrita17 in reply to SlowDragon]

Hi Slow Dragon,

I take 75 levo daily.

My last results show:

TSH: 1,98 (0,5-5)

T4: 1,30 (0,7-1,7)

B12: 250 (200-900). GP doesnt want to medicate. He says it is OK.

Ferritin: 13. Just started suplementing with 150mg of ferrous sulfate.

Maybe it is the ferritin causing this symptom?

[SlowDragon Administrator in reply to Alejandrita17]

How much do you weigh in kilo approx

Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo of your weight

Low vitamin levels tend to lower TSH

Inadequate dose levothyroxine tends to lower vitamin levels

Chicken and egg

Have you had vitamin D tested

If not get tested

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

vitamindtest.org.uk

B12 likely too low

What about folate result

GP will only treat vitamin deficiencies

Down to you to improve low, but not optimal vitamin levels

Are you vegetarian or vegan?

supplementing 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 is a recommended option that contains folate, but is large capsule. 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...

Low B12 symptoms

b12deficiency.info/signs-an...

If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

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

healthunlocked.com/thyroidu...

[Alejandrita17 in reply to SlowDragon]

I weight 53 kg, so I think that 75 levo might be ok for the moment. What worries me more is the difficulty to absorb nutrients. Especially Iron and B12. What is the matter there? I'm supposed to be well medicated now, I'm not celiac, nor vegetarian or vengan whatsoever. Shouldn't we be absorbing these nutrients from food itself? I started levo 9 months ago and I had assumed I would be "cured" by now :-(((Do you still supplement yourself?

[SlowDragon Administrator in reply to Alejandrita17]

When hypothyroid we almost always have LOW stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result

Extremely common to need to supplement continuously to maintain optimal vitamin levels

If supplementing iron, retest full iron panel 3-4 times year. Important to check iron and ferritin

Yes, I need to supplement vitamin D, vitamin B complex continuously otherwise levels drop. (Been on levothyroxine 28 years, and T3 prescribed alongside levothyroxine for 5 years)

But, like significant minority of Hashimoto’s patients, I have very high ferritin. So I have annual iron panel test to check that iron is not too high. Inflammation of Hashimoto’s or hemochromatosis can cause high ferritin

[SlowDragon Administrator in reply to Alejandrita17]

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...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to Alejandrita17]

53 x 1.6 = 84.8 as likely dose levothyroxine required

So you might need to take 75mcg 4 days a week and 100mcg 3 days a week

Or 75mcg 5 x week and 100mcg 2 x week

[Jazzw]

Ah happy memories. My late husband used to make the odd violent jerk when falling asleep (used to make me jump too, LOL)—long before developing hypothyroidism. I’m trying to remember if being optimally medicated for hypothyroidism reduced it a bit. Think it might have done…

[SeasideSusie Remembering]

Alejandrita17

As it's been 6 months since you posted that your ferritin level was 8, what has been done about this? Ferritin below 30ug/L confirms iron deficiency. Your GP should be addressing this.

[Alejandrita17 in reply to SeasideSusie]

Yes, I started suplementing with iron 2 weeks ago. I now take 75 levo, 2000 vit D daily and 150 mg of iron tablets. Nevertheless, I fear that I might need to take these pills forever! It's OK with T4, but what about the others? Shouldn't we get that from food itself once we are correctly medicated? What's your opinion on the matter?

[SeasideSusie Remembering in reply to Alejandrita17]

Alejandrital17

I started suplementing with iron 2 weeks ago.

Is this prescribed? If so why has treatment been delayed so long, it was in April thatyou said your ferritin level was 8.

I now take 75 levo, 2000 vit D daily and 150 mg of iron tablets. Nevertheless, I fear that I might need to take these pills forever! It's OK with T4, but what about the others?

What is your Vit D level? Hopefully you had it tested before supplementing?

How did you work out you need 2,000iu Vit D?

Do you take Vit D's important cofactors that are needed - magnesium and Vit K2-MK7?

If you have/had Vit D deficiency then supplementing is very likely for life andyou need to test twice a year to check your level and adjust dose if necessary.

Iron tablets - you need regular monitoring and once you reach the optimal level you can see if food alone will keep your level stable, if not then you will need to look at periodic supplementing.

Shouldn't we get that from food itself once we are correctly medicated?

Food no longer contains the amount of nutrients it used to due to the way it is now produced and how the soil is now depleted of minerals, etc. So we may get some from food but it may not be enough.

Iron rich foods - liver, liver pate, black pudding, etc:

bda.uk.com/resource/iron-ri...

everydayhealth.com/pictures...

Vit D rich foods - oily fish (salmon, sardines, herring, mackerel, etc), red meat, liver, egg yolk. Plus getting Vit D naturally from the sun during the summer months.

[Alejandrita17 in reply to SeasideSusie]

As for the ferritin, the GP told me to "wait and see". When he realised it did not improve, he sent me the pills 2 weeks ago. Vit D was also low, just 8 too, but i've been supplementing for a year now. My current level is 40.

Folate has always been at mid range level, sometimes higher. My Big problem now is ferritin and B12. I hoped that once medicated I would be absorbing nutrients again, but that is not happening.

I don't have Hashimoto, my thyroid was destroyed 4 years ago due to a virus attack (De Quervain Thyroiditis), and could not recover.

[SlowDragon Administrator in reply to Alejandrita17]

With such terrible vitamin levels it’s definitely worth trying strictly gluten free diet

You might see some slow improvements in nutrient absorption

It’s always worth trying strictly gluten free diet

[Alejandrita17 in reply to SlowDragon]

Thanks Slow Dragon!

I will try to get gluten out of my diet. It's sooo difficult though! But it's worth trying.

[SeasideSusie Remembering in reply to Alejandrita17]

Alejandrita17

As for the ferritin, the GP told me to "wait and see".

I'm not sure whether your GP is an idiot, a sadist or should be looking for another job.

Vit D was also low, just 8 too, but i've been supplementing for a year now. My current level is 40.

Is the unit of measurement nmol/L or ng/ml?

Is your Vit D prescribed?

Do you take it 4 hours away from your thyroid meds?

Do you take the cofactors mentioned above?

[humanbean]

I had these jerks before falling asleep too. But fixing my nutrient levels - particularly my iron and ferritin - got rid of them. I also assume that having better levels of thyroid hormones helped too.

[humanbean]

I looked at your previous post :

healthunlocked.com/thyroidu...

Have I understood it correctly?

Your doctor thinks that a ferritin level of 8 is okay as long as you aren't coeliac? Or did I get the wrong end of the stick?

Have you had any treatment at all for your low iron and ferritin?

[Alejandrita17 in reply to humanbean]

Hi humanbean.

I started suplementing 2 weeks ago with Ferrous Sulfate, 150 daily. Doctors don't pay much attention to nutrients. Now, My ferritin is13. Still very very low.

Maybe it is the ferritin causing this horrendous symptom?

[humanbean in reply to Alejandrita17]

Ferritin gives you a measure of your iron stores.

There is a lot of overlap between symptoms of hypothyroidism and iron deficiency.

restartmed.com/hypothyroidi...

It is common for people to take a long time to raise their iron and ferritin levels. It took me nearly two years, although most people wouldn't take that long.

Be aware that serum iron and ferritin are two different tests. It is possible for either one to be low and the other to be high, or both to be low or both to be high. Depending on the results of low or high it can tell you different things about your health.

healthunlocked.com/thyroidu...

You could get a finger-prick iron panel test from Medichecks :

medichecks.com/iron-tests/i...

And you can get 10% off with the discount code given on this page :

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

How are you coping with the ferrous sulfate? There are other iron supplements that many people may find more tolerable than ferrous sulfate.

You might find this reply to another member of interest - ignore the first bit about pregnancy, assuming it has no relevance to you. :):

healthunlocked.com/thyroidu...

[Alejandrita17 in reply to humanbean]

Thanks a Lot!Fortunately, I don't experience any discomfort with the Iron tablets. The GP told me I have to take them daily, for 3 to 6 months. And then we'll see. My question is: do we have to take iron tablets for life, as with the Thyroxine?? Did we lose the capacity to absorb nutrients forever? I am not celiac according to the exams.

[humanbean in reply to Alejandrita17]

It shouldn't be necessary for most people to take iron for ever. But for some people who absorb iron poorly they may have to take a maintenance dose of iron after they've optimised what they can of their iron. And there are some conditions in which taking iron should be avoided, such as when someone has Anaemia of Chronic Disease (ACD), at least until the problems causing that anaemia have been identified and dealt with (if possible).

All the time I was taking iron (which went on for about 7 - 8 years) I was checking my iron levels regularly. I wanted to make sure that none of the things I was testing that were iron-related were going over or under range (although my TIBC was a problem - it was suggesting I had very high iron when in fact it was very low - contradictory iron-related results are not rare, they are just annoying and make it hard to know what to do to improve matters).

Once I got my ferritin up to mid-range I cut my dose of ferrous fumarate 210mg from one tablet three times a day down to no more than one a day. After lots of experimenting with dose I ended up sticking with a dose of taking one tablet, on four days a week.

I am currently not taking iron at all, after my ferritin shot up, and my serum iron and transferrin saturation dropped dramatically, although both were still in range when I last tested. My results suggest I have developed ACD, so I gave up the iron to prevent the ACD getting worse. I'm hoping it might get better on its own, but I know I'll have to test again soon to see what's happening.

[humanbean in reply to humanbean]

Oh, I should have added - I'm not coeliac either. But I still improved a lot on a gluten-free diet.

[SlowDragon Administrator in reply to Alejandrita17]

Until your vitamins are optimal levothyroxine will struggle to work well

It’s chicken and egg

Vitamins are low because you are hypothyroid

You remain hypothyroid because vitamin levels are low

Many people on levothyroxine need to supplement continuously to maintain optimal vitamin levels

Strictly gluten free diet often helps improve absorption issue

Increasing acidity of gut is another option too