Confused

[Poppylilly2015]

My 8 year old daughter was diagnosed with autoimmune thyroid disease,and we were told that this was because the putrity gland in her brain was working to hard to produce the hormone to make her thyroid work,she was put on Levothyroxine 25 megs,she has bloods taken ever 3-4 month her recent bloods have come back and it’s saying she has thyroid peroxidase antibodies and thyroglobulin antibodies in keeping with her autoimmune thyroid disease and as a result her thyroid is failing very quickly,she has other medical conditions but this one has us totally confused,recently she has lost her appetite,has sore legs,cries all the time and if I’m honest I’d like a hormonal teenager,can anyone help

[Mary-intussuception]

So sorry to hear of your daughter's suffering, Poppylilliy.

It's because your daughter has Hashimoto's Autoimmune Thyroiditis (named after the Japanese doctor who discovered it ) that the healthy Thyroid tissue has been attacked by her own antibodies rendering it Underactive. So her Pituitary Gland has been overworking to produce more TSH (Thyroid Stimulating Hormone ) to compensate for the lack of Thyroxine being produced naturally by her Thyroid gland which is not functioning fully. This should improve now that she is on Levothyroxine. Her TSH result should come down so her Pituitary Gland shouldn't have to overwork. However, it takes time for the Levothyroxine to get into the system. But it would usually be adjusted according to blood tests results and symptoms.

Do you have any copies of her blood tests results? Do you ask for print outs?

If you could add her TSH, Free T3 and FreeT4 results in here then people can comment.

I'm afraid I don't know enough about Juvenile Hypothyroidism to comment , but hopefully someone more experienced than I will come along soon.

Have you studied the Levothyroxine patient information leaflet? Is your daughter on medication for her other conditions? Were you given any guidance on timing of Levothyroxine and other meds?

Have you considered asking for copies of all her medical records. Then you can monitor her blood results.

Have you updated her Specialist or GP with these symptoms?

[Poppylilly2015 in reply to Mary-intussuception]

We see her consultant on the 13th feb,and will tell him about these new symptoms,and also ask for copies of her bloods,she isn’t on medication for her other conditions,she has laryngo and tracheo Marcia,and a positive succusion splash

[Mary-intussuception in reply to Poppylilly2015]

Has she been tested for Coeliac Disease or had any other Antibodies tested ? Ask about this ?

Anyone in the UK can request copies of their medical records free of charge now, since change in rules on 25 May 2018. Find out name and email address of person who deals with requests from hospital. Could be someone in Medical Records or Legal Services.

[pgdw in reply to Poppylilly2015]

Ask her consultant if she will be tested for other antibodies, so more complex autoimmune conditions can be excluded like Lupus etc... Need a good rheumatologist for this one...

[Mary-intussuception in reply to Poppylilly2015]

I looked up the other conditions and was also wondering if the Autoimmune Thyroiditis and Hypothyroidism have previously been missed.

Have you ever been tested for Thyroid and any other Antibodies?

Have you ever had any symptoms of Underactive Thyroid yourrself ? (Check the list on the Thyroid UK website ).

Does any member of your family have a Thyroid problem?

Just a few things to consider.

[Poppylilly2015 in reply to Mary-intussuception]

My husband and I were both tested in December and all came back ok,my husbands side of the family gave thyroid problems,I am beginning to wonder if all symptoms are related

[Mary-intussuception in reply to Poppylilly2015]

Yes, it's quite possible that all symptoms are related. Every cell in the body needs Thyroxine in order to function. So nothing works properly without enough of it. That's why we have so many symptoms. You have probably not been fully tested. And - if TSH is high, but within range you would just be told "ok" or "normal ".

May I suggest that you all apply for copies of your medical records, especially all blood tests results. Consider these and present symptoms - then decide about asking for more tests including Free T3 & Antibodies.

Problem is - with Hashimoto's the regular tfts (Thyroid Function Tests) results can fluctuate and fall within 'normal' range. They can also differ throughout different times of the day. So best if tests are booked for earliest appointment (8.30 - 9am) and nothing to eat or drink apart from water prior to tests. Sadly, GP practice staff don't generally acknowledge the significance of this.

It's important that the Thyroid Antibodies are tested to eliminate or confirm Autoimmune Thyroiditis. This, though not curable, is what causes the Hypothyroidism which is treatable. Also once diagnosed the "normal" range TSH no longer applies. The target Therapeutic level of TSH is maximum 2. Most people on here say it should be no more than one. This is to protect the Pituitary Gland from over working.

If having symptoms an Ultrasound scan of the Thyroid could be asked for.

I had Hypothyroid Blood results in 2008 which were overlooked. No one told me. I was very unwell. Under Colorectal Specialist, Gastroenterologist, Orthopaedics. No real help from anyone. By 2010 was seeing ENT, who did help, but not with Thyroid and Rheumatologist. On noticing the 2008 results on the computer the Rheumatologist retested Thyroid function - but only TSH and T4. He said they'd come back 'normal' so Thyroid 's ok - you have Fibromyalgia.

I applied for my records and noticed that my 'normal ' results in 2010 were actually a TSH near the top of range and T4 near the bottom.

Following advice from a helpline I asked my GP for an Ultrasound scan of my Thyroid. The morning after the scan (which revealed the Thyroiditis ) GP refered me to an Endocrinologist. His secretary sent me the blood form for many tests - including Thyroid Antibodies - one week before appointment.

My diagnosis in late 2011 (finally) was Hashimoto's Autoimmune Thyroiditis & Hypothyroidism.

I had been ill on & off all my adult life. Always took a long time recovering from infections, thought all my illnesses and symptoms were linked but felt I was thought to be a Hypochondriac by at least one GP. Went round them all !!

Some symptoms may also be due to nutritional deficiencies because of malabsorption for eg Vitamin D so do ask for these tests also.

Don't give your daughter any multivitamins or minerals. Wait till she's tested then address any deficiencies. If found to have Vitamin D deficiency or insufficiency the GP should prescribe Colecalciferol (D3) supplement and retest sometime in the future.

I didn't even know I had Vitamin D insufficiency until I asked for tests after joining this forum almost 2 years ago.

[Mary-intussuception]

So, putting it simply:

The raised TPO (Thyroid Peroxidase Antibodies ) and raised Tg (Thyroglobulin ) confirm the Autoimmune Thyroiditis ( Hashimoto's ).

The Hashimoto's has caused the Hypothyroidism (Underactive Thyroid ).

The Hypothyroidism has caused the Pituitary Gland to overwork by producing extra TSH (Thyroxine Stimulating Hormone ).

Now on the Levothyroxine, your daughter's TSH should come down and T4 improve.

Hope this helps.

[Poppylilly2015 in reply to Mary-intussuception]

She was started on 25 mcgs and just over a year later I’d on 75mcgs,her t4 levels are normal

[Mary-intussuception in reply to Poppylilly2015]

It's helpful to have all results with ranges in brackets and dates of tests. TSH, Free T3 and FreeT4.

It would help to also ask her GP to test some nutrients levels :

Vitamin D, Calcium, B12, Folate and Ferritin.

Then any deficiency can be addressed with prescribed supplements. It's important that these nutrients levels are good for the Levothyroxine to work well.

Haven't heard of the other conditions.

Levothyroxine should be taken on its own with water only and an hour before food.

Has your daughter had an Ultrasound scan of her Thyroid?

[jimh111]

Your daughter’s dose should be adjusted according to her latest results and most importantly her symptoms, make sure the doctor is on the ball. Although she is smaller than an adult children turn over thyroid hormone quicker than adults so her dose is probably too low.

It is most likely her hypothyroidism is caused by an autoimmune condition, this destroys thyroid function. The pituitary secretes TSH to stimulate the thyroid. As the thyroid hormone levels fall the pituitary secretes more TSH in an attempt to stimulate the thyroid to produce more hormone. When your daughter is given levothyroxine it replaces her natural thyroxine secretion and this brings her TSH Level back down. They should prescribe enough levothyroxine to bring her TSH down to about 1.0 or 2.0, initially at least.

Hashimoto’s thyroiditis is the name given to an autoimmune condition that leads to thyroid gland damage and inflammation, usually with a goitre. Strictly speaking there has to be inflammation for it to be classified as Hashimoto’s but the term is frequently used to include hypothyroidism that is probably due to autoimmune damage. This is the usual cause of hypothyroidism.

[Poppylilly2015 in reply to jimh111]

I’ve just found a letter from her bloods in November and her TSH Level was 5.52 and a t4 of 22.1

[jimh111 in reply to Poppylilly2015]

This is a little unusual, we would expect TSH to be lower with an fT4 of 22.1. I would ask for her TSH, fT3, fT4 to be measured. The fT3 is important and can be justified due to her strange TSH, fT4 result. I would avoid any dietary changes or supplements until you have the results so you don't have a moving target as it were.

[Mary-intussuception in reply to Poppylilly2015]

The November TSH level was too high.

Are these the most recent blood tests? The aim is usually for the TSH to be brought down to less than 2 ( to protect the Pituitary Gland from over working ).

Did she have an increase in Levothyroxine dose following this result?

Do you have the range for the T4 result?

She really needs FreeT4 and FreeT3 testing.

[Jazzw]

Out of interest, has her laryngo-tracheo-malacia improved since she’s been on levothyroxine?

I’m just wondering whether it’s possible she’s had hypothyroidism since birth or babyhood and whether it’s been a contributory factor all this time...

Anyway, as the others have said, get copies of her thyroid function tests and by all means post them here for comment. We’re just patients ourselves and it’s our combined experience, but it’s amazing how the power of the collective can help find a route out through the maze. And so-called “normal” results are often found not to be “optimal”—there can be a big difference in how you feel when optimally treated.

Has she ever had Vit B12, folate, ferritin and Vit D tested? All tend to drop through the floor when hypothyroid for any length of time, and, just by way of an example, low Vit D might be the root cause of those sore legs.

[Slowfarmer]

Possibly Lyme disease has she been tested? I have high thyroid antibodies/Hashimotos after Lyme disease. You can order your own tests through Armin Labs. See Dr Sarah Myhill's website! All best wishes Slow farmer X

[Raw57]

My son was born without a thyroid. With state mandated testing it was confirmed at 4 weeks. With a child they must adjust her medication slowly. In the USA a child is seen by a pediatric endocrinologist. It’s important to be followed by a specialist. When he was young he was seen every 3 months due to growing and his needs changing frequently for different dosage of medication. It’s very important to take on an empty stomach and not eat or drink or take other medication or vitamins for 30 minutes after taking the thyroid medication. I hope the correct dosage is found soon. I hope her symptoms ease up as well. I would definitely ask for more labwork to rule out any vitamin deficiency and other autoimmune immune disorders. Good luck!

[Sedum]

I would put her on a strict gluten free diet immediately and up the nutrients she gets, ideally by taking high quality supplements and eating good quality food. Juicing and organic food is important and cutting out toxins we get from personal care, household spays etc. The pituitary gland is part of auto immunity bit as the body works holistically it is art of the puzzle. The body works on nutrients and can correct itself given enough good nutrition. Synthetic hormones are not my field, I have never wanted to take them for similar problems I have had. Be aware that an endo is trained in that. The consultant I had in Guildford years ago laughed at the idea that my hormones had a certain effect during times of my period even though I was telling him of my experience for years. He had no holistic view. I went to a consultant who had studied the positive effects of a gluten free diet and tested me for all kinds of things. I have great respect for him and took his advice. because i felt better after his help.

[Catania1]

Read Izabella Wentz’s book “Hashimoto's Protocol: A 90-Day Plan for Reversing Thyroid Symptoms and Getting Your Life Back” (on Amazon). You can help your daughter put the disease into remission (i.e., lower her antibodies appreciably) through lifestyle changes (gluten free, soy free, dairy free, etc) and by adding critical thyroid supplements to her diet (selenium, iron if necessary from bloodwork, etc). It is crucial to lower antibodies because 1) she will feel better, and 2) it will lower the chance of her getting another autoimmune disease on top of the one she alresdy has (once you have one, your chances of getting another—such as Lupus or Rheumatoid Arthritis—are greatly increased). Best of luck! Oh and demand a thyroid cover for her whenever she gets xrays at the dentist’s office!

[HughH]

You mention that your husbands side of the family have thyroid problems. It is probably this genetic condition which has caused your daughter`s health issues: Impaired Sensitivity to Thyroid Hormone (more often known as Thyroid Hormone Resistance). It causes hypothyroid symptoms and requires very high T3 levels (often above the top of the normal range) in the body to overcome the resistance.

It is worth mentioning this to the doctors but it is unlikely that they will give it serious consideration.

[Wagamama]

Hi, I’m really curious, can you let me know what made them test for thyroid function? What were her symptoms?

It’s easy as an adult to explain how we feel but I’m really curious to know what symptoms she was presenting? I have a 7 year old and am wondering maybe some of her symptoms could be thyroid related and am thinking about getting her tested.

Thanks

[Poppylilly2015 in reply to Wagamama]

She had bloods done for one if her other conditions and it was picked up

[Mary-intussuception in reply to Wagamama]

Hi Wagamama

I've just had a quick look at some of your posts and would say - Yes, definitely ask for your daughter to be tested as you have Hashimoto's (which is hereditary) & Hypothyroidism.

I'd write a list of all her symptoms and a list of all the tests you are requesting: TPO, TgAb, FreeT3, FreeT4 , TSH:

Also try and get - Vitamin D, B12, Folate and Ferritin tested.

[Mary-intussuception]

" . . lost her appetite , has sore legs . . "

Could your daughter have constipation and maybe not realised? Or not mentioned?

A full bowel can put pressure on the circulation as well as cause loss of appetite.

Chronic constipaton is also a symptom of Hypothyroidism.

[Poppylilly2015 in reply to Mary-intussuception]

No definitely not