Advice please on supplements: I am here on behalf... - Thyroid UK

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Advice please on supplements

Domikk profile image
17 Replies

I am here on behalf of girlfriend who is worried about symptoms she can't make sense of. She is 29 years old and has thyroid peroxidase antibodies of 377 (<34 IU/mL).

Symptoms list -

Seeing flashing spots/floaters in her eyes

Dizziness and breathlessness when standing from squatting

Tiredness

Dry skin

Discharge in eyes

Hard stools

Joints aching

Weight gain though is still petite

Puffy feeling to eyes

Hair loss

Dark circles under eyes despite trying to catch up with sleep

Sugar cravings

Salt cravings

She also has iron anaemia (receiving treatment), folate anaemia (receiving treatment), vitamin D deficiency (receiving treatment) and polycystic ovaries (not receiving treatment but undergoing various other tests to establish androgen levels).

I have segregated each vitamin/mineral issue below to make it clearer (I hope I've made it clearer!)

Iron/ferritin

She was diagnosed with iron deficiency anaemia in 2011 with a ferritin level of 27 (30 - 400 ug/L) and MCV 79 (82 - 100 fL) but no treatment given until 2013 when her ferritin level got worse at 15 (30 - 400 ug/L) and she was given 3x times ferrous fumarate to take each day. She had digestive problems when taking them and could only manage taking 1 ferrous fumarate to take each day. She explained her concerns to the GP who referred her for counselling and told her she was being noncompliant by making up excuses not to take her iron tablets. This continued until 2016 when she was referred to haematology and given an iron infusion. Her ferritin was boosted to 197 (15 - 150 ug/L) and her MCV was continually in the lower or middle part of range, her MCHC always in the top part of range or above range. Haemoglobin and iron always at bottom of range. Over the year her ferritin is now dropping back down and below results are her most recent. She has her iron and ferritin and complete blood count levels monitored every 3 months and is back on 1 iron tablet per day.

Ferritin 61.1 (15 - 150 ug/L) haematologist wants her ferritin above 50 before going for infusion however she has found that each of her periods reduces her ferritin by 20 points.

Folate

She was diagnosed folate deficient in 2016 and takes folic acid 5mg once a week due to neuro symptoms. Below result June 2017.

Folate 2.3 (2.5 - 19.5 ug/L)

Vitamin B12

She has B12 injections once every 3 months due to symptoms of low B12 but level of B12 has been in range. Below result done January 2017. Her haematologist says further B12 levels will likely be skewed since she has injections.

Vitamin B12 336 (190 - 900 pg/L)

Vitamin D

She was diagnosed vitamin D deficient in 2013 with a level of 43.2 (25 - 50 nmol/L) and prescribed 800iu vitamin D. She was told by a friend (who is a health practitioner) that 800iu vitamin D is not enough for her level and recommended she take a higher dose, she didn't know how much though. So since March 2015 she has been taking 6000iu vitamin D. Below result done in June 2017. She has 6 monthly checks on her vitamin D levels by her GP and she does not go out in the sun since she is photosensitive to the sun's rays.

25 hydroxy vitamin D2 level <6.0

25 hydroxy vitamin D3 level 60.3

Total 25 OH vitamin D level 60.3

(50 - 75 nmol/L vitamin D may be suboptimal, and long-term may lead to clinical effects. Advise on safe sun exposure and diet. Supplementation may be indicated)

List of supplements she takes:

Better You 6000iu vitamin D (once a day)

5mg folic acid (once a week)

1 ferrous fumarate (once a day)

Better You Magnesium spray (when she can remember) - as a sleep aid

List of other ones she has but doesn't take:

Selenium 200ug

Nutri multimineral and multivitamin complex (contains iodine) - advised by a private nutritionist

Vitamin E 400iu - due to fibrocystic breasts

Thanks for reading.

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Domikk profile image
Domikk
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17 Replies
marsaday profile image
marsaday

What is her thyroid status/treatment ?

She has hashimotoes and so will need some thyroid medication. She will have had her tsh and ft4 tested. What are these results.

Low iron is part of being hypothyroid. As you improve thyroid health the iron will improve. She is taking all the right vitamins and minerals.

High vitamin d intake can sometimes be counter productive. She may need to take some vitamin k as well. Too much vit d can lower cortisol. Getting natural sunlight is crucial to better health. So next summer try and stay in the sun for as much as she can tolerate and expose skin to the sun.

She is likely to be low in cortisol as this is often the trigger for the autoimmune illness hashimotoes. Cortisol keeps on top of inflammation and immunity issues. So this area needs to be looked at.

If she is going to take thyroid meds look into small doses of t3 as an addition to any t4 she is prescribed and look at taking a dose at 4am. This t3 dose can naturally boost cortisol production. Paul Robinson has written a book about using t3 to boost cortisol performance and it is a much better method than taking many adrenal support tablets or hormones.

There is a lot to learn with her illness and I can only give so much info. Others will contribute I am sure

Domikk profile image
Domikk in reply to marsaday

Previous results (175mcg levothyroxine - fasting, leaving 24 hours between dose and blood draw, early morning)

TSH 0.03 (0.2 - 4.2 mIU/L)

FREE T4 20.1 (12.0 - 22.0 pmol/L))

FREE T3 4.2 (3.1 - 6.8 pmol/L)

jgelliss profile image
jgelliss in reply to marsaday

marsaday

Very informative as usual . I was not aware that high doses of Vitamin "D" supplements can lower cortisol levels . Cortisol helps with our pain . Very interesting . Is it possible that by dosing with higher dose of vitamin "D" could have caused my heel pain ? WOW !!! That would answer my question why I suddenly experienced this pain . Thank you marsaday for sharing this important information that I did not know and I'm sure many others didn't either .

Nanaedake profile image
Nanaedake

I find it very disappointing that the doctor sent her for counselling when it's well known that iron can upset the digestive system and there are different options including the iron infusion which could have been done much sooner. This has resulted in unnecessary suffering.

The advice on this forum (although not advised by NICE) is to take vitamin C along with iron supplements to increase absorption. There are different types of iron that can be prescribed if one kind causes stomach problems. Ferritin needs to be at least 70 or mid-range for thyroid medication to work well. Taking ferrous fumerate twice a day is likely necessary until levels rise.

She was correct to increase vitamin D intake but should also take some magnesium and K2-Mk7 with the vitamin D3. Ensure it is vitamin D3. Retest every 6 months as vitamin D is stored so check it stays within range. Mid-range is best.

Many people who are hypothyroid have digestive discomfort, probably brought on by low stomach acid and many seem to be intolerant to gluten. In addition there is some scientific evidence that taking levothyroxine can contribute to gut problems in some people, although this can't be helped as we need levothyroxine to function.

It's essential to examine nutrition when you have thyroid disease and change the way you eat to nurture your stomach back to full health. Vegetables, fruit, meat, diary (unless dairy intolerant) and good oils such as olive oil home cooked food are the most important things. The Diabetes UK website has good advice about a healthy diet and some recipies for low carb high fat diet which seems to help many people.

Very low vitamin levels despite supplementation might suggest some lack of absorption so getting food and gut function optimal could help a lot. 200mcg of selenium daily may help to prevent thyroid antibodies attacks.

XDog profile image
XDog in reply to Nanaedake

Nanaedake

Just a small point. make sure it is Diabetes .CO .uk, not .org - they are different.

Nanaedake profile image
Nanaedake in reply to XDog

good point

Heloise profile image
Heloise

Hi Domikk, So they are treating everything but her thyroid/adrenal problem? Many times the digestive issues cause all those deficiencies. To address the deficiencies without correcting the digestive problem may not even help raise B12, folate and iron. I guess the reason is that it is very complicated to address the autoimmune condition. This will give you an idea.

youtube.com/watch?v=3_uaUXi...

Domikk profile image
Domikk in reply to Heloise

Previous results (175mcg levothyroxine - fasting, leaving 24 hours between dose and blood draw, early morning)

TSH 0.03 (0.2 - 4.2 mIU/L)

FREE T4 20.1 (12.0 - 22.0 pmol/L))

FREE T3 4.2 (3.1 - 6.8 pmol/L)

Heloise profile image
Heloise in reply to Domikk

As you can see, her high FT4 should be creating more FT3 and when it isn't, something is going wrong with conversion. Ferritin needs to be high enough and I see that's a problem for her. Dr. Kharrazian gave a talk and stated that if you can't metabolize iron very well, even taking supplements presents the same problem. She may not have enough stomach acid to do it. This can relate to all minerals and amino acids. She should try to improve that with HCL or pepsin or Betaine with meals. Even apple cider vinegar can work well. The other problem is high cortisol. Have you thought of including some T3? She could reduce some of the T4.

This may offer some advice. stopthethyroidmadness.com/r...

greygoose profile image
greygoose

For a start, she should ditch the multivitamin/mineral - and probably the private nutritionist, too! If a nutritionist doesn't know how useless - and possibly dangerous - multivitamins are, s/he is not much of a nutritionist. With iron in the mix she's not going to be able to absorb anything, and the last thing she needs is iodine! She hypo. Iodine will make things worse.

I don't know what folic acid once a week is supposed to do! For a start, folic acid is synthetic folate, and not as well absorbed as methylfolate. And secondly, 5 mg once a week won't do anything.

If she's having B12 injections, she should be taking a B complex, to keep the Bs balanced, because they all work together. Get one with at least 400 mcg methylfolate, and that will raise her folate nicely.

If she's taking vit D3, she should also be taking vit K2 - MK7. Taking vit D3 increases absorption of calcium from food, so the K2 will make sure it goes into the teeth and bones, and not build up in the soft tissues. And, magnesium every day would be better! :)

How much ferrous fumarate is she taking once a day?

Domikk profile image
Domikk in reply to greygoose

210mg once a day thanks

Russellb73 profile image
Russellb73

Sounds like me !! I went through this cycle with gps referring me to everyone apart from the people I needed to see.

Ask to be referred to an encrinologist ! Explain that there is no way she can have this many problems all at once without it being something deeper going on,

Once I was referred it took 10 months. To get my addisons diagnosis but one year on and self medication feeling so much better.

Another point to raise if it is Addison’s or adrenal insufficiency they will try and keep her on low doses it didn’t work I found out by trials how much by body needed but this is another mine field.

I also take vit b12 / folate patches and vit d3 daily still on t4, I’m off all antidepressants and feeling so much better.

Good luck

Russell 🙏🏻🙏🏻🙏🏻

Domikk profile image
Domikk in reply to Russellb73

Thanks she is under an endo but at the last appointment he upset her

Russellb73 profile image
Russellb73 in reply to Domikk

No surprise mine did the same persistence is key if you don’t agree with his attitude ask to see someone else I did that I’m under 2 consultants now !!

It’s such hard work ? Did she have a Synacthen test? If so what were the results ??

The first hospital carried out my Synacthen test wrong which obscured the results so I ask to see another specialist.

Also you need to know what levels they work to on the Synacthen test some work at 09:00, 09:30 and 10: 00 three lots of bloods others only use 2 lots

What is there cut of Range some work to 550 others 450 !! You need to know exactly which ones so you can prepare

Domikk profile image
Domikk in reply to Russellb73

She has cortisol result of 335 (140 - 700 mmol/L) but she did not fast and she was stressed at the time. This was done at 9am or before that. I remember her leaving early for the hospital appointment for it to be carried out.

Cortisol done again and was 621 (no idea what the range is)

30 min cortisol 945 (no cut off)

60 min cortisol 983 (no cut off)

She thinks results were skewed, they were done 3 years ago

Russellb73 profile image
Russellb73 in reply to Domikk

621 after 30 mins or even 60 is good my last test was 77 then 111 which was progress for me my previous results were <25 then after 30 mins still <25

So her adrenals seem to be functioning well !!

SlowDragon profile image
SlowDragonAdministrator

See SeasideSusie detailed vitamin advice to similar results eg

healthunlocked.com/thyroidu...

Her vitamin D is still not high enough despite 6000iu. I take same dose, but I do also go out in sunshine a lot to boost. We need what we need and with Hashimoto's and that tends to be a high dose, as unable to absorb much through gut (which is why Better You mouth spray is good )

Adding magnesium everyday is good idea. Calm vitality magnesium powder is cheap and easy to use (must be at least 4 hours away from Levo)

Selenium is definitely recommended, I actually take one that is combined with vitamin E (Solgar) but everyone has their own favourites

Vitamin C everyday will improve adrenals and help with iron

B12, would be good idea to use sublingual B12 lozenges every day between injections and also take good vitamin B complex (one that has folate in not folic acid which many can't convert)

But when 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...

But also going absolutely strictly gluten free will very likely help gut heal and lower antibodies

Bone broth good too

Bone broth

thyroidpharmacist.com/artic...

And daily probiotic and/or fermented foods like kefir

Avoid all iodine it's not good for Hashimoto's

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