hi: my 29 year old daughter has hashimotos but... - Thyroid UK

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skyra profile image
10 Replies

my 29 year old daughter has hashimotos but her endo refuses to raise her dose based on a tsh of 4.80 (0.2 - 4.2) and free t4 14.6 (12 - 22) free t3 3.2 (3.1 - 6.8) back in December 2017 as her results are not following a pattern. she takes 100mcg levo but had better conversion of t4 to t3 on the addition of t3 to her levo. the endo did not even ask her how she was feeling, her symptoms are reduced immunity, constipation, brain zaps, headaches, heavy and painful periods, dry skin, puffy and dark eyes. she was diagnosed hashimotos in 2014. thank you in advance.

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SeasideSusie profile image
SeasideSusieRemembering

With an endo like that she would be better off not bothering. There is no real pattern with Hashimoto's, the antibodies fluctuate and cause fluctuations in results and symptoms. An endo who understands autoimmune thyroid disease should know that.

She could ask to be referred to different one but as most are diabetes specialists you should email Dionne at tukadmin@thyroiduk.org for the list of thyroid friendly endos then ask for feedback from members on any that she can get to.

Has she discussed her over range TSH with her GP? Will her GP treat her appropriately? If so she should ditch the endo.

Is she addressing the Hashimoto's by being strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily?

Hashi's often causes low nutrient levels, has she had these tested

Vit D

B12

Folate

Ferritin

If so, what are the results and is she supplementing with anything, if so what dose?

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever needed for FT4 and FT3 to be in the upper part of their reference ranges. She should ask for an increase in dose and use then following in support of her request

thyroiduk.org.uk/tuk/about_... > Treatment Options

"Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

Dr Toft is past president of the British Thyroid Association and leading endocrinologist. You can obtain a copy of the article by emailing Dionne at tukadmin@thyroiduk.org and highlight question 6 to show her doctor.

skyra profile image
skyra in reply to SeasideSusie

hi, her gp has referred her for a second opinion as her current endo is not being very helpful. she is due a retest for thyroid and neither of us are sure when she will be seen. her referral had been sent 2 weeks ago, she saw the gp about a month ago. she did not know about going gluten free and taking selenium, she is only taking vitamin d but was taking a whole lot of other supplements. because she was skipping other supplements for a day she decided to start all over again taking just one, waiting 2 weeks before reintroducing another

SeasideSusie profile image
SeasideSusieRemembering in reply to skyra

Are the supplements prescribed?

It's important to take a dose appropriate to the level shown when tested. If you can post the results and say what doses she is taking I can let you know if she is taking enough and advise of any cofactors needed. Some vitamins are water soluble and any excess will be excreted, others are fat soluble and excess gets stored so it's important not to take more than is needed. Also, timing of supplements is important when taking Levo.

If you have the name of the new endo, I would check on the hospital's website (endocrinology department) to see what his/her speciality is. I expect it will be diabetes and if it is I would cancel that and ask to be referred to one from the ThyroidUK list that comes member-recommended. If this second opinion is the only other chance she will have with the NHS then best not waste it.

Information about Hashi's

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

hypothyroidmom.com/hashimot...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

skyra profile image
skyra in reply to SeasideSusie

she has been taking vitamin d 1000iu since march 2015, her level in December 2017 was 57.7 (50 - 75 suboptimal. advise on safe sun exposure and diet) she was confirmed vitamin d deficient in 2012. gp monitors her vitamin d every 6 months

she was confirmed iron deficient in December 2014, her ferritin level in December 2017 was 59 (30 - 400) and takes 1 iron tablet. gp monitors her iron and ferritin every 3 months

she was confirmed low in b12 in February 2016, her b12 level in January 2017 was 242 (190 - 900) and she has b12 injections every 3 months. I am guessing no point in checking her b12 again if she is on injections? she gets lightheaded when waiting for her next injection and the lightheadedness improves after the injection

she also takes folic acid 5mg since January 2017 and her level in this at the time was 2.2 (2.5 - 19.5) gp monitors her folate every 3 months

skyra profile image
skyra in reply to SeasideSusie

levo taken in the morning, supplements were being taken at night

SeasideSusie profile image
SeasideSusieRemembering in reply to skyra

Vit D: 57.7

The Vit D Council recommends a level of 100-150nmol/L. She needs 5000iu daily for 3 months then retest. When she's reached the recommended level she will need to find her maintenance dose by trial and error, it may be 2000iu daily, maybe more or less, and she may need more in winter than the rest of the year.

Important Cofactors are K2-mk7 and magnesium. D3 aids absorption of calcium from food and K2-mk7 directs calcium to bones and teeth where it is needed and away from arteries and soft tissue where it can be deposited and cause problems. Magnesium helps the body use D3.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, 4 hours away from thyroid meds.

Magnesium comes in different forms, she should goose the one most suitable for her and as it's calm g it's best taken in the evening, at least 4 hours away from thyroid meds naturalnews.com/046401_magn...

**

Ferritin: 59 (30 - 400)

Ferritin needs to be at least 70 for thyroid hormone to work, preferably half way through the range. Eating liver regularly will help raise Ferritin.

Any iron tablets should be taken with 1000mg Vit C to aid absorption and help prevent constipation, and iron should be taken 4 hours away from thyroid meds and 2 hours away from any other meds and supplements as it affects their absorption.

**

B12

She can always supplement with sublingual methylcobalamin before her next injection is due, or even self inject. You could ask on the PA forum about self injecting healthunlocked.com/pasoc

When taking B12 we need a good B Complex to balance all the B vitamins, eg Thorne Basic B

**

Folate: 2.2 (2.5 - 19.5)

She needs to discuss this with her GP. For someone who has been taking folic acid for over a year to still be deficient should be ringing alarm bells with her doctor. It's no good monitoring but ignoring continued deficiency. Investigating for absorption issues would be a good idea.

SeasideSusie profile image
SeasideSusieRemembering in reply to skyra

PS - as she has Hashi's then an oral Vit D spray will offer better absorption than any other form, eg BetterYou.

skyra profile image
skyra

also, she was thinking about taking magnesium as a gp told her it was a bit low?

magnesium 0.83 (0.70 - 1.00)

a private doctor also told her that her zinc was low as well. she recommended she take a supplement called nutri and it had boron, iodine, magnesium, selenium, etc. she can't remember what other minerals were in it and she can't find it on the nutri website. the tablets were too big for her to swallow

SeasideSusie profile image
SeasideSusieRemembering in reply to skyra

As she has Hashi's then taking Iodine is not recommended. It is anti-thyroid and used to be used to treat hyperthyroidism. Also, it can apparently worsen the antibody attacks.

Has she seen this private doctor with regard to her thyroid? What has this doctor suggested?

SlowDragon profile image
SlowDragonAdministrator

See my reply to post above yours

healthunlocked.com/thyroidu...

Insist on blood test for coeliac disease before changing to strictly gluten free diet if test is negative. If test is positive she will have to continue eating gluten until endoscopy to confirm. Should be within 6 weeks, but will have to push for that.

Iodine definitely not recommended with Hashimoto's.

drknews.com/iodine-and-hash...

thyroidpharmacist.com/artic...

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