Posting on behalf of 11 year old daughter

[Ayesh11819]

Hi I am new and posting on behalf of 11 year old daughter who has Hashimotos diagnosed very recently (Nov 2017). She takes 50mcg Levothyroxine moved up from 25mcg Levothyroxine. Her endocrine consultant has written in a clinic letter that she is very symptomatic despite normal thyroid levels so I am left wondering if our family GP should be looking into the cause/s of these symptoms? She is short of breath, her legs are swollen, she can't feel her hands and feet, she is confused, she has trouble moving her legs, she "hurts everywhere", stool very hard, her tummy hurts and she feels sick, her tongue is smooth and beefy and red with sores on it, her lips are chapped and flaky, her eyes are watery and bloodshot, spots all over her body, she can't sleep at night, she cannot focus or concentrate, she is tired most of the day, she has lost weight, she doesn't feel like eating some days, very irritable.

Advice appreciated, thank you in advance for any help anyone can give.

Nov 2017 (diagnosis, started on 25mcg Levothyroxine by endocrine consultant)

TSH 55.7 (0.2 - 4.2 mIU/L)

FT4 10.1 (12 - 22 pmol/L)

TPO antibodies 275 (<34 IU/mL)

TG antibodies 355.3 (<115 IU/mL)

Jan 2018 (50mcg Levothyroxine)

TSH 4.77 (0.2 - 4.2 mIU/L)

FT4 13.9 (12 - 22 pmol/L)

FT3 3.1 (3.1 - 6.8 pmol/L)

[bantam12]

She doesn't have "normal thyroid levels" the Endo is an idiot. Your daughter is undermedicated and her dose needs to be gradually increased until her TSH is around 1 and T4 and 3 nearer the upper part of the ranges, she's still fairly new to treatment so she will have to be patient as there are no quick fixes. I think perhaps you need to find an Endo who has a clue as this one doesn't ! Hopefully your GP is better with thyroid problems.

[SeasideSusie Remembering]

Also, read up about Hashi's and how to address it.

Gluten free diet, supplementing with selenium L-selenomethionine 200mcg daily helps reduce antibodies for many Hashi's patients.

chriskresser.com/the-gluten...

hypothyroidmom.com/hashimot...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

Hashi's can trash nutrient levels. Ask for vitamins and minerals to be tested

Vit D

B12

Folate

Ferritin

Nutrients need to be optimal for thyroid hormone to work properly.

[Ayesh11819 in reply to SeasideSusie]

Thank you, she has had these tested, they are

Dec 2017

Ferritin 22 (15 - 150 ng/L)

Folate 2.1 (2.5 - 19.5 ng/L)

Vitamin B12 204 (190 - 900 pg/L)

Vitamin D total 33.5 (25 - 50 nmol/L deficient.)

GP is looking at potential coeliac/absorption problem in her gut.

[SeasideSusie Remembering in reply to Ayesh11819]

"GP is looking at potential coeliac/absorption problem in her gut."

Make sure investigations are done. Also ensure folate deficiency and low B12 are addressed, as well as Vit D Deficiency. Ferritin is very low and can suggest iron deficiency anaemia, she needs full blood count and iron panel.

SlowDragon has lots of information and links about Hashi's and low nutrients.

[SlowDragon Administrator in reply to Ayesh11819]

These are far too low and need significant supplements to improve

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

Vitamins are terrible because your daughter is under medicated

You need a pedeadric specialist endo.

Has GP done coeliac blood test?

Push for urgent endoscopy so that she can go strictly gluten free ASAP regardless of the coeliac test result

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

Low vitamin levels affect Thyroid hormone working

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)

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

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

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

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

chriskresser.com/the-gluten...

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

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

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, 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)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
[e-mail]

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

[SlowDragon Administrator]

Ask Thyroid UK for list of recommended thyroid specialists.

[Kalicocat]

Please remember that she needs to keep eating gluten until she has had all of the coeliac tests, you don't want those to be negative due to her being on a gluten free diet.

[Ayesh11819 in reply to Kalicocat]

Thank you

[jimh111]

She is undermedicated and should have a levothyroxine increase. Her B12 is quite low and often patients are symptomatic even with normal levels of B12 so I would try her on B12 (methylcobalamin) for a month or so to see if her pains go away. B12 deficiency can cause neuromuscular pains.

I would not go gluten free if the coeliac tests are negative and certainly not put her through an endoscopy if it is not indicated. I'm not aware of any scientific evidence that removing gluten from the diet will affect the progress of thyroid autoimunity, although a number of 'alternative' doctors suggests it will (without providing hard evidence). If the tests show she has a gluten problem then of course she will need to reduce her gluten intake substantially.

[Ayesh11819 in reply to jimh111]

Thanks for this.

[SilverAvocado]

Really shocking that an Endo would call these 'normal' blood tests. The TSH is out of range for goodness sake! She could get a diagnosis of a thyroid condition with those results!

The rule of thumb is that the freeT3 should be in the top third of the range. This will probably take TSH close to 1 or below.

These vitamin results are also terrible. They need to be treated as a matter of urgency, as each can cause symptoms, and low B12 can cause permanent neurological damage. The very rough rule of thumb with these is that they should be at least halfway up their range, and most are better off higher.

Your daughter is being completely let down by her current doctors I think you've got to read up and become knowledgeable about this illness so you can double check what they say over the years. This forum is a great place to start, as people here are very knowledgeable.

I know one member has said going gluten free isn't important for Hashimotos sufferers. Anecdotally on this forum some people get a lot of relief from it, but others don't. She mustn't go gluten free before the cow loaf test, but later its very worth trying it for two or three months. If you don't see any change in symptoms just give it up. Although with gluten free it must be very strict, even a tiny bit of exposure can spoil the effect.

[Conmaster]

I think maybe a second opinion may help. She shouldn’t have all those symptoms.

[Mamapea1]

Your poor daughter! And poor you! ~ so glad you found this forum whilst her illness is in it's early stages ~ there are so many helpful people on here that understand the pitfalls ~ you will get excellent advice. Don't rely on GP or endo (unless they are the exception to the rule and actually understand how Hashis works) ~ instead, arm yourself with information from around the site so you are prepared for appointments. Whatever happens in the future, don't let them label her with CFS/ME or Fibromyalgia ~ it's their 'get out clause' when they don't 'get it'!

Read Dr J Lowe pages and watch the relevant videos of Dr John Bergman ~ and the myriad of other recommended info ~ everyone is different so you have to apply your daughters specific problems yourself ~ it's a journey, but well worth it, and seems to be in most cases, sadly, the only way.

For hard stool/constipation try Linusit golden linseed from health shop ~ full of beneficial omega 3 fatty acids and goes slimy once ingested to aid passage ~ maybe mix with yoghurt or kefir (it tastes of nothing, bit like sesame seeds) or a tiny bit of magnesium citrate powder dissolved in water or juice ~ that stuff moves mountains lol! Constipation is nasty though, and takes away your appetite, impacting further on nutritional deficiencies.

If her stomach problems are bad she may have problems with absorption of some of the prescribed vits, in particular I could not tolerate the Vit D and suffered colic type pain and had to discontinue its use. My Vit D was very low and injections didn't help at all. I have found that Better You DLux D3 oral spray an absolute godsend and the only solution to raising my levels. They also make B12 spray,turmeric, etc. ~ I heard they had a Better You VitD and K2 combined which would make life easier, but haven't come across it yet. Of course, all these have to be bought and I only tell you all this 'just in case' ~ her stomach issues may very well subside when she is optimally medicated.

Warmest wishes and good luck Mamapea x

[Ayesh11819 in reply to Mamapea1]

Thank you ever so much Mamapea xx