Signed up on behalf of daughter: Hi, I am newly... - Thyroid UK

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Signed up on behalf of daughter

Jule65 profile image
11 Replies

Hi, I am newly registered and I am here on behalf of my 30 year old daughter with hypothyroidism, she has struggled coming to terms with and living with her illness despite what the GP says are over medicated results on 175mcg levothyroxine - but she does not feel over medicated, in fact far from it.

She has symptoms of puffy eyes, fatigue, dry skin, acne, periods being heavy, gaining weight, depressed, joints aching.

She feels she needs to be blamed for having over medicated results and I really want to help her.

Thanks in advance.

TSH 0.03 (0.2 - 4.2)

Free T4 21.1 (12 - 22)

Free T3 4.3 (3.1 - 6.8)

TPO antibody 278 (<34)

TG antibody 355.3 (<115)

Diagnosed 2012

Has had a few dose changes due to above range or below range TSH

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Jule65 profile image
Jule65
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11 Replies
SeasideSusie profile image
SeasideSusieRemembering

Jule65 If you post test results, with reference ranges, members can comment.

Ideally we need

TSH

FT4

FT3

Has she had thyroid antibodies tested, there are two types - Thyroid Peroxidase (TPO) and Thyroglobulin (TG)?

Has she had vitamins and minerals tested:

Vit D

B12

Folate

Ferritin

Is she taking any supplements, if so what dose?

How long since diagnosed hypo?

Any dose changes, if so what was the reason?

Jule65 profile image
Jule65 in reply to SeasideSusie

TSH 0.03 (0.2 - 4.2)

Free T4 21.1 (12 - 22)

Free T3 4.3 (3.1 - 6.8)

TPO antibody 278 (<34)

TG antibody 355.3 (<115)

Diagnosed 2012

Has had a few dose changes due to above range or below range TSH

greygoose profile image
greygoose in reply to Jule65

She doesn't have over-medicated results. In fact, her FT3 is much too low - you're only over-medicated if your FT3 is way over-range. Hers isn't even mid-range, because she has a conversion problem. What she needs is her levo reduced, and some T3 added to her levo.

She also has Hashi's - does she understand that? Has the doctor talked about it? Probably not, he doesn't appear to know much about thyroid. Anyway, when you have Hashi's, you need your TSH suppressed, so hers is right where it should be!

Is she gluten-free and taking selenium? These things could help with antibodies, and make her feel a bit better.

But, she should rest assured, absolutely none of this is her fault. She just has Hashi's and a rubbish doctor. :)

Jule65 profile image
Jule65 in reply to greygoose

Thanks she hasn't been taking selenium or gluten free

Jule65 profile image
Jule65 in reply to SeasideSusie

She had iron infusion in 2016, nothing further to correct recurrent iron deficiency. Also 800iu vitamin D which she has been taking since 2013 and 5mg folic acid since November 2016.

Ferritin 38 (30 - 400)

Folate 2.3 (2.5 - 19.5)

Vitamin B12 261 (190 - 900)

Vitamin D 46.6 (25 - 50 deficiency)

The_will_of_Jill profile image
The_will_of_Jill

Is the doctor instructing her to take her levo only hours before the blood work is done?

Jule65 profile image
Jule65 in reply to The_will_of_Jill

No the endo isn't

SeasideSusie profile image
SeasideSusieRemembering

Jule65 Greygoose has said exactly what I would say, (she gets up earlier than me :) ). The only thing I would add is some information about Hashi's. Your daughter needs to learn as much about it as she can so she can help herself, her doctors certainly aren't helping.

Her high antibodies mean that she is positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. You may get symptoms of being overmedicated (hyper type symptoms) to go along with these results that look as though you are overmedicated. Unless a GP knows about Hashi's and these hyper type swings, then they panic and reduce or stop your thyroid meds.

Maybe that's what happened and resulted in the dose changes. The swings are temporary, and eventually things go back to normal. Test results settle back down and hypo symptoms may return. Thyroid meds should then be adjusted again, increased until you are stable again. Unfortunately, very few doctors understand this.

Adopting a strict gluten free diet can help reduce the antibodies. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

**

She had iron infusion in 2016, nothing further to correct recurrent iron deficiency.

Is she being monitored? Does she still have below range MCV/MCHC? If so, and iron deficiency is still recognised by her doctor, she needs treatment. Maybe another iron infusion or iron tablets. Doctors seem to aim to get levels back into range and then think everything is fine. Well, it is at that moment in time, but unless the good levels are maintained they are going to plummet again and you're back to square one. It doesn't seem too hard for a doctor to maybe suggest a way of maintaining the new levels, maybe a reduced dose of iron tablets is the answer, but they don't seem to address this.

**

Ferritin 38 (30 - 400)

For thyroid hormone to work ferritin needs to be at least 70, preferably half way through range. She needs an iron supplement and needs to discuss this with her doctor, taking into account her apparent current iron deficiency.

She can also help raise her level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

**

Vitamin D 46.6 (25 - 50 deficiency) 800iu vitamin D which she has been taking since 2013

A good question for your daughter to ask her doctor:

"Considering I've been supplementing with Vit D for 4 years, why is my level still in the deficiency category?"

It will take forever to raise her level to that recommended by the Vit D Council, which is 100-150nmol/L. 800iu is hardly a maintenance dose for someone with a reasonable level.

She wont get any more from her GP, at her current level the guidelines state that 800iu is the prescribed amount. She should buy her own D3 softgels like these bodykind.com/product/2463-b... and take 5000iu daily for 8-10 weeks, then reduce to 5000iu alternate days, retest 3 months after starting. When she's reached the recommended level she'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

Folate 2.3 (2.5 - 19.5)

Vitamin B12 261 (190 - 900)

5mg folic acid since November 2016.

Another question for her GP:

"Considering I've been taking folic acid for amost a year, why am I still folate deficient?"

Was her B12 level ever low than 261? Was she ever checked for signs of B12 deficiency? Check now b12deficiency.info/signs-an... . It might be a good idea to post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

If her B12 was higher and she wasn't still folate deficient, I would probably suggest self supplementing, but I'm no comfortable doing that with those levels. I think you need advice from the experts on the PA forum, mention these levels, her ferritin and iron deficiency information and any signs of B12 deficiency she has or may have had.

**

Hashi's and gut/absorption problems go hand in hand, poor nutrient levels are often seen. I imagine this might be the case for your daughter. All nutrients need to be optimal for thyroid hormone to work, plus gut problems need to be sorted. SlowDragon has some useful information and links that will help there.

**

And I absolutely agree with Greygoose that a small reduction in Levo and the addition of T3 is what's indicated by those current results.

Jule65 profile image
Jule65 in reply to SeasideSusie

Her B12 was higher than 261, she wasn't checked for signs of B12 deficiency but when her B12 was higher she was folate deficient. She still has MCV 78.2 (80 - 98) and MCHC 376 (310 - 350) but not monitored for this. Thanks

SeasideSusie profile image
SeasideSusieRemembering in reply to Jule65

Jule65 So her MCV and MCHC are still suggesting iron deficiency. She must see her doctor, point this out, and push for treatment.

All our vitamins and minerals need to be at optimal levels (not just in range) for thyroid hormone to work so she needs

Vit D - 100-150nmol/L

B12 - very top of range, even 900-1000

Folate - at least half way through it's range

Ferritin - half way through it's range

Iron deficiency addressed

SlowDragon profile image
SlowDragonAdministrator

Changing to a strictly gluten free diet may help reduce symptoms. Very, very many of us here find it really helps and can slowly lower antibodies.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/why-changi...

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

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Probiotics

carolinasthyroidinstitute.c...

Great film definitely shows why this is such a complex disease and that it is as much a gut problem as thyroid

drbradshook.com/understandi...

Improving vitamins as outlined by SeasideSusie are also essential

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