Help with results: Hi This is my first post, I... - Thyroid UK

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Help with results

Emat profile image
Emat
23 Replies

Hi

This is my first post, I’ve been struggling with my health for some years now I was diagnosed with Hashimoto‘ s and I’m coeliacs. I’m on 125 levothyroxine and have started taking vitamin D. I’ve posted my latest results below and am hoping someone can give me some input, I’m thinking I may need a T3 blood test?

Thyroid function test

Serum free T4 level 10.8 pmol/L (12.0-22.0)

Serum TSH level 1.55 mid /L (0.27-4.2)

Thanks in advance

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Emat profile image
Emat
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23 Replies
greygoose profile image
greygoose

How long have you been on 125 mcg levo? Your FT4 is incredibly low. Do you take your levo on an empty stomach, leaving one hour before eating or drinking? Do you take any other medication or supplements at the same times as levo? Do you know what your TSH was on diagnosis?

So, I imagine that you are 100% gluten-free, having both Coeliac and Hashi's. Are you doing anything else to heal your gut?

Your vit D is very low. How much vit d are you taking? Have you had your vit B12, folate and ferritin tested?

So many questions, I'm sorry. But every little detail counts. :)

Emat profile image
Emat in reply to greygoose

Hi sorry I also meant to say I am gluten free and have been for about 10 years, I don’t take anything else for my gut apart from omeprazole once in a while. Also I’m not sure if I replied to you above or just posted again 🙈

greygoose profile image
greygoose in reply to Emat

Omeprazole is not recommended for hypos. Hypos normally have low stomach acid, so omeprazole makes things worse because it makes the acid even lower. But, the symptoms of low stomach acid and high stomach acid are the same, which is why doctors automatically prescribe PPI's without investigating. Omeprazole will not help heal your gut.

Emat profile image
Emat in reply to greygoose

I have it on a repeat prescription I had my gall bladder removed could be because of that, but hardly take it any more. I’m not sure if you saw my other answers, sorry feels like a lot to read! I’ll paste it below.

Hi Greygoose thanks for replying,

I’ve been on 125mcg for 6 weeks now, I take them before bed and then take vit D in the morning (1,000 I.U.) I’m not sure what my TSH was in the beginning but have a letter from a year ago stating it was 0.26IU/L but with no range, sorry probably unhelpful.

My Ferritin is 106.0ug/L (13.0-150)

B12 is 344ng/L (197-771) think they seem ok, I can’t see they have tested the folate. I have a blood test this Wednesday to see if the extra 25mg has worked. I can’t feel a difference to be honest!

greygoose profile image
greygoose in reply to Emat

Omeprazole has nothing to do with the gallbladder being removed. Glad to hear you hardly take it. :)

Marz profile image
Marz in reply to Emat

Your PPI is blocking the uptake of B12 from foods. We need good acid levels to remove the B12 molecules from protein whilst in the stomach before the onward journey into the duodenum for metabolising in the Terminal Ileum ....

B12 - if low and untreated becomes a neurological condition and is linked to brain shrinkage when LOW.

b12deficiency.info/signs-an...

Scroll down in the above link to read all about B12 - the neurological symptoms come first ! Click onto Films in the Menu and watch the videos about B12.

PPI's one of the BIG earners for BIG Pharma - so glad you are reducing - there are natural alternatives.

Emat profile image
Emat in reply to Marz

My doc never mentioned the B12, so I’m definitely bringing that up! Thanks Marz 👍

Marz profile image
Marz in reply to Emat

Why would they when they are well rewarded with funding points for prescribing a PPI. GP's rarely know much about B12 and you will be told you are fine with a result at the bottom of the range. So read and learn so you can take control of your health ....

Emat profile image
Emat in reply to Marz

Absolutely 👊😊

Emat profile image
Emat

Hi Greygoose thanks for replying,

I’ve been on 125mcg for 6 weeks now, I take them before bed and then take vit D in the morning (1,000 I.U.) I’m not sure what my TSH was in the beginning but have a letter from a year ago stating it was 0.26IU/L but with no range, sorry probably unhelpful.

My Ferritin is 106.0ug/L (13.0-150)

B12 is 344ng/L (197-771) think they seem ok, I can’t see they have tested the folate. I have a blood test this Wednesday to see if the extra 25mg has worked. I can’t feel a difference to be honest!

greygoose profile image
greygoose in reply to Emat

Well, the extra 25 mcg won't 'work', because it's not enough and your FT4 is so low. I doubt if 25 mcg has even taken it into range. But, in any case, you need it at least over mid-range, probably higher. What does your doctor think about your low FT4? You really do need an FT3 test, though.

So, a year ago your TSH was also very low, but did they also test the fT4?

Your ferritin is fine, but your B12 is too low. It should be at least over 500, because below it, neurological damage can occur.

What time is your test on Wednesday? Ideally, it should be very early in the morning, after fasting over-night, because that's the way you get the highest TSH. But, in any case, do not take your levo for 24 hours before the test, if you want an accurate FT4 reading. :)

Emat profile image
Emat in reply to greygoose

My test is a walk in so I’ll do it first thing in the morning! My doctor didn’t say anything about the results just to say she would up the dose! I’ve learned a lot in the last couple of days by reading posts in here so will be having a chat with her next week! Thanks for ur input on this 😊

greygoose profile image
greygoose in reply to Emat

You're welcome. :)

ElRR profile image
ElRR

You should definitely have your t3 tested for a full picture. You should also test for zinc levels (zinc is needed for conversion of t4 to t3, and is commonly low in people with hashimotos. The big question is, how are you feeling?

As you’re someone who is unable to tolerate gluten, have you looked into the autoimmune protocol diet? Gluten is one of the major triggers for many people, along with dairy and soy. It could be worth a look, as many people have found it very useful on healing hashis.

Emat profile image
Emat in reply to ElRR

Hi Eirr,

I am gluten free, but still eat dairy, I’m thinking of getting a private blood test to check my T3, I’m new to all of this although I’ve seen endocrinologists for a few years now they have never mentioned anything like this, I’ve just learned about it here and by talked no to someone! I still feel exhausted all the time my settee is my best mate!

ElRR profile image
ElRR

The AIP could help (it doesn’t hurt to try). Getting on t3 (synthetic or natural) may be necessary. Not everyone feels better on synthetic t4 alone

Have you had antibodies tested?

Emat profile image
Emat in reply to ElRR

I’m going to take a look at the AIP, thanks for advice, I don’t believe I’ve had the antibodies tested, so am going to speak to my doctor next week, don’t think it will get me anywhere so will probably look to get a private blood test done.

ElRR profile image
ElRR in reply to Emat

NHS will test t4 and t3, but other things may need to be done privately. I’m not sure about antibodies. Some nhs doctors will prescribe synthetic t3, (liothyronine) and a few others natural. It’s a bit of a postcode lottery. Before you see a private endo, learn what they will and won’t do. Otherwise you’re likely to spend a lot of money to be told you won’t receive help. Sorry to have frustrating news. You should also check out Isabella Wentz’s web page. She has a lot of info that can help you get started on your journey to recovery.

Emat profile image
Emat in reply to ElRR

Thanks for the info, I’ll check with my doctor, hopefully this will be a start to getting better 😊

SlowDragon profile image
SlowDragonAdministrator

As a coeliac you should have been advised years ago that low vitamin D, B12 etc are likely.

But if your coeliac dietitian, similar to one I saw, was about as much use as chocolate teapot.

1000iu is not an adequate dose of vitamin D to bring levels up

oxfordshireccg.nhs.uk/profe...

As you can see on that chart, very least you should have is 1600iu per day.

But with both Hashimoto's and coeliac likely to need a higher dose. Many of us find using vitamin D mouth spray is good as avoids poor gut function

Perhaps try 2000-3000iu daily and retest via vitamindtest.org.uk in 2-3 months - NHS postal kit £29

Aiming to improve to around 100nmol. Likely to need ongoing maintenance dose. Trial and error what each person needs. Retesting twice yearly recommended

Low Vitamin D linked to autoimmune diseases, especially coeliac and Hashimoto's

scdlifestyle.com/2012/07/wh...

holtorfmed.com/vitamin-d-au...

Read up about importance of magnesium and vitamin K2 Mk7 supplements when supplementing vitamin D

theceliacmd.com/2013/05/mag...

thespruceeats.com/gluten-fr...

Your vitamin B12 is low. Again common with Hashimoto's and coeliac and linked to low vitamin D too

drgominak.com/sleep/vitamin...

Supplementing B12 and/or a good quality vitamin B complex likely to be of benefit, one with folate in, eg Igennus Super B or Jarrow B-Right

If you are 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...

Low stomach acid is more likely with Hashimoto's than high stomach acid too

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

pulsetoday.co.uk/clinical/m...

Emat profile image
Emat in reply to SlowDragon

Thank u for replying soo much good information I will read up, honestly baffles me why doctors send u for blood testing and then ignore most of the results. The first dietician I ever saw didn’t even know what coeliacs was! Ah well I’m glad I have joined this group!

SlowDragon profile image
SlowDragonAdministrator in reply to Emat

Sounds like you and I had same dietitian then 😀

jgelliss profile image
jgelliss in reply to SlowDragon

SlowDragon

Thank You . Great Comprehensive Post . Chuck Full of valuable Info .

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