Help with supplements : I have Hashimotos and... - Thyroid UK

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Help with supplements

Kyla665 profile image
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I have Hashimotos and possible coeliac. Previous results of vitamins were

Vitamin D 21.1 (<25 severe)

Folate 2.3 (2.5 - 19.5)

Ferritin 44 (30 - 400)

Vitamin B12 202 (190 - 900)

I have loading doses of vitamin D and B12 injections, also iron deficient and folate deficient, thank you

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Kyla665 profile image
Kyla665
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22 Replies
SeasideSusie profile image
SeasideSusieRemembering

Kyla

Best thing to do is ask for your new test results and post them on the forum. Also say what you have been supplementing and the doses and whether these are changing with your new results.

In the meantime, as you have Hashi's from results in your other thread, check out posts by SlowDragon about Hashi's and gut/absorption problems - click on her user name then Replies.

Kyla665 profile image
Kyla665 in reply to SeasideSusie

Thank you! I have B12 injections every 3 months since Feb 2017, 5mg folic acid since Nov 2016. These were done in Dec 2017. I had vitamin B12, iron, ferritin, folate and D done 4 weeks ago, not sure when they would come back to the practice.

SeasideSusie profile image
SeasideSusieRemembering in reply to Kyla665

Kyla

I think they should be back by now. Ring the surgery and ask then pop down to collect a print out. They are unlikely to contact you unless the results are out of range.

Kyla665 profile image
Kyla665 in reply to SeasideSusie

I have been told they are out of range. Thanks!

SeasideSusie profile image
SeasideSusieRemembering in reply to Kyla665

Kyla

If they are out of range then what is your doctor going to do about them?

Go and get a print out of the results, post them on the forum (include reference ranges) and members can comment which will give you an idea of what to discuss with your doctor about supplementing.

ShootingStars profile image
ShootingStars in reply to Kyla665

Which are out of range and are they high or low? If your B12 is that low on injections every 3 months, then you likely need a higher dose.

Kyla665 profile image
Kyla665 in reply to ShootingStars

Vitamin D 38.2 (25 - 50 deficiency)

Folate 2.2 (2.5 - 19.5)

Ferritin 28 (30 - 400)

Vitamin B12 199 (190 - 900)

ShootingStars profile image
ShootingStars in reply to Kyla665

I see. These are interesting results since you are supplementing B12 and folate. Are you taking iron? The headline of your post says you suspect Celiac Disease. What makes you think you have Celiac Disease?

I am wondering about your diet. What are the main foods that you consume regularly? Your levels make me wonder if you're on a vegetarian diet.

Vitamin D: Good job! You increased your Vitamin D. What is does "loading dose" of Vitamin D mean? How much, when was this taken, and then are you taking Vitamin D daily, too? How much?

Folate: Your level has dropped. It was previously deficient and is now worse. What form of folate are you taking? Is it synthetic and called Folic Acid, or does it have a different name? How much, how often?

Ferritin: You are now deficient. Your previous level was low. Are you taking any iron supplements? How much and what form? What are the sources of iron in your diet?

B12: You are very low in the range, which has decreased since your last test. What form of B12 are your injections and in what dose? If you've been on B12 injections for as long as you have and you have these low levels, you are not getting anywhere near enough B12. What are the sources of B12 in your diet?

Kyla665 profile image
Kyla665 in reply to ShootingStars

I suspect I have coeliac because of these symptoms:

Low vitamins and minerals

Eczema

Cracks at corners of mouth

Diarrhoea

Bloating

Headaches

Weight loss and weight gain

Foods I consume regularly are

Nothing for breakfast

Sandwich for lunch (usually cheese or tuna)

Microwave ready meal, takeaway

I am on a 300,000IU loading dose of vitamin D, it is once weekly. I have been on it for 4 weeks.

Synthetic folic acid, 5mg, daily

No iron, not in diet either

B12 injections are hydroxocobalamin and they are once every 3 months. Not sure of B12 in diet

ShootingStars profile image
ShootingStars in reply to Kyla665

Thank you. Ok, this all makes sense now. This doesn't exactly look like Celiac Disease at first glance because of your diet. It looks instead like your poor diet is causing your symptoms, malnutrition and deficiencies. Based on your diet, there is a good chance is probably causing most or all of your symptoms. It really is horribly a insufficient diet. Your low vitamins and minerals are due to your diet, making you sick. You are not consuming anywhere near enough calories or enough essential nutrients for your body to function well. Not enough calories will do a number on your metabolism, mess up your entire body, causing symptoms and causing weight issues. It is no wonder you have these symptoms and low vitamin levels.

Your ferritin level is deficient because you're not consuming any iron in your diet. Is there any reason you not eat iron containing foods?

The "foods" you mentioned are not exactly food groups or food items. Is that white bread on the sandwhich? Are there vegetables in the sandwich? What types of food are consumed in "microwave ready meal" or "takeaway"?

I am not sure you are even consuming 1,000 calories a day, which is no where near enough. I do not know your age, height, weight, or activity level, but depending on these variants, you should be consuming 1,600 to 2,500 calories per day through a balanced diet.

I don't know that Celiac would be considered the first cause of your symptoms when all of your symptoms can be tied to inadequate calories, inadequate nutrients, and inadequate vitamin intake. A nutritionist can help you plan meals so that you are eating to be healthy and be healthy.

Kyla665 profile image
Kyla665 in reply to ShootingStars

Thanks. I had a coeliac blood test which I was told indicated coeliac disease? TTG antibodies were over range.

I don't know what are iron containing foods.

It is white bread on the sandwich or oatmeal bread. There are no vegetables in the sandwich and takeaways are usually fish and chips or Chinese takeaways.

Ready meals are usually chicken curry, lamb curry, cottage pie, fish pie

ShootingStars profile image
ShootingStars in reply to Kyla665

You're welcome. I'm not sure I'm understanding. You suspected Celiac and you are eating gluten? Celiac Disease is an autoimmune disease in which gluten triggers an autoimmune response for your body to attack your small intestine. Any form of gluten is not to be eaten if you have Celiac Disease.

For Celiac's, TtG is supposed to be tested with IgA. IgA tests for Celiac antibodies. Otherwise TtG by itself can give a false positive if you have another autoimmune disease, in which case, these would need to be ruled out. What was your IgA?

If you have confirmed Celiac Disease with the above tests, this means that cannot eat gluten or any foods that contain traces of gluten. White bread is made of gluten. Some oatmeal, unless designated as gluten free, contains gluten. Some people with Celiac's cannot even eat gluten free oatmeal. All pies have crust made of gluten. Chinese food usually contains gluten. Chips often contain gluten.

Top iron containing foods: red meat like beef or lamb, shell fish or other fish from the sea, spinach, dried fruits like apricots, egg yolk, certain nuts, quinoa.

Kyla665 profile image
Kyla665 in reply to ShootingStars

I have never had IgA checked. It's not on any of my printouts. Maybe I should ask GP to test me for this.

Thanks

ShootingStars profile image
ShootingStars in reply to Kyla665

That would be a very good idea. Did they test EMA or DPG antibodies? Even more important would be to learn about nutrition and to see a nutritionist. Whether you have Celiac or not, your diet is severely lacking in calories, elemental nutrients (such as iron), fiber, vegetables and healthy fats. If you really do have Celiac Disease, then you need to learn how to eat for not only health and nutrition, but also for Celiac Disease.

Kyla665 profile image
Kyla665 in reply to ShootingStars

Thanks. No never been checked for EMA or DPG antibodies either.

ShootingStars profile image
ShootingStars in reply to Kyla665

Your'e welcome. Oh. :-( makes it impossible to know if you have Celiac Disease, or not.

SlowDragon profile image
SlowDragonAdministrator

Have you had coeliac blood test? If not ask GP to do asap

If result is positive then you need to remain on high gluten diet until endoscopy to examine gut. Should be within 6 weeks of positive blood test.

If test is negative then you can immediately go on strictly gluten free diet

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Yours are obviously dire

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Your dose of Levothyroxine needs increasing in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range.

Blood test 6-8 weeks after each dose increase.

Essential to get vitamins optimal

First thing is, you need to get hold of copies of latest vitamin test results . You are legally entitled to printed copies of ALL your blood test results

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 25th 2018)

Come back with new post once you have results and ranges

Kyla665 profile image
Kyla665 in reply to SlowDragon

Thank you! I haven't had coeliac blood test yet. I had vitamin B12, iron, ferritin, folate and D done 4 weeks ago, not sure when they would come back to the practice.

Gambit62 profile image
Gambit62

Please note that there is a forum on HU for PA - the most common cause of B12 absorption levels

healthunlocked.com/pasoc

having hashis significantly increases the chances that you have PA (both are auto-immune conditions).

There is a significant overlap in symptoms of B12 and hashi's ... and many people with B12 absorption problems need B12 much more frequently than 3 monthly injections.

If you have B12 absorption problems it can also affect absorption of other vitamins and minerals - particularly folate and iron

Kyla665 profile image
Kyla665

Have just been told by GP surgery that results came back 2 weeks ago, GP hasn't looked at them

SlowDragon profile image
SlowDragonAdministrator in reply to Kyla665

Then push for copies asap. They won't release results until GP has seen them

GP's often think vitamin levels are unimportant, but they are very important

in reply to Kyla665

Keep nagging. You deserve necessary treatment asap, NOT at the doctor's convenience. The squeaky wheel gets the grease! Good luck with this medical skirmish. Take care. irina

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