thyroid advice help no diagnosis

[Pussycatlou]

looking for advice. My daughter is 13 and having dreadful symptoms. It’s affecting school and other aspects of life. First blood tests match showed TSH 0.6 with normal t4. Variety of other tests ok. Recent paed review and bloods TSH now 0.3 in matter of weeks and t4 high at 19. Awaiting t3 result which I am guessing will be abnormal. Said they won’t start treatment until TSH undetectable. My concern is how symptomatic she is but I really know anything about this and want to be well informed. Anyone help??

[PurpleNails]

Welcome to forum.

Sorry your daughter has symptoms. 

Collect all her results with lab range & ensure the correct range for age is applied.  (Ranges vary between labs so always needed) FT4 - 19 is high but within most ranges.  

In some practices you can arrange access to records online and at 13 your daughter can organise access herself (or sign a form to consent to you accessing for her).  

Collect printed copies in meantime.

TSH, FT4 & FT3 need to be tested together. If FT4 & FT3 are over range the cause of hyperthyroid levels needs to be investigated. 

Thyroid antibodies should be tested as this will show if autoimmune is affecting thyroid.  

Hashimoto’s causes transient hyper ultimately hypothyroid (immune system attacks / damages thyroid) 

Graves cause continuous hyper from immune system stimulating the thyroid.  

Antibodies:

TPOab (Thyroid Peroxidase antibodies) underactive  & Graves 

TGab (Thyroglobulin antibodies) underactive & Graves 

TSI - Thyroid-Stimulating Immunoglobulin (signifies hyper Graves autoimmune) 

TRab - TSH receptor antibodies (TRAb) (signifies Graves autoimmune) 

GPs can arrange TPO endocrinologist specialist for Graves antibodies.  

TSH is not reliable - keep monitoring FT4 & FT3.  

TSH doesn’t have to be undetectable to necessitate treatment.  If FT4 & FT3 are over range it should be fully investigated.  If the hyper is continuous they should be lowered into range.    

Usually the TSH is undetectable by the time thyroid levels are consistently over range.

If thyroid levels remain high there is a medication to lower what the thyroid can produce.

If ultimately the level drop then replacement hormone can be taken.  

Important to check folate, ferritin, B12 & vitamin D.

You may also want to post on main thyroid uk forum.

Much busier forum with many more members.

[Pussycatlou in reply to PurpleNails]

this is such useful information thanks. Do you think that with results changing in short space of time and multitude of symptoms- palpitations, anxiety, hair thinning, intolerance of heat, nervous energy, sleep problems, nausea, weight loss. Fully grown at 4ft 11. Does it not look like we are heading in hyperthyroid direction?? She is a wee soul and I just want to help x

[PurpleNails in reply to Pussycatlou]

Absolutely - Those are all very hyper type symptoms.  

I had elevated levels (from hyper nodule) & those symptoms crept in very gradually, likely over a 4 year span.  So virtually unnoticed.  

With autoimmune (either hashi or graves) the levels can fluctuate suddenly & symptoms can very disabling even though the doctors look at the range & will say it’s only slightly abnormal or within range therefore not at stage to treat.

Does she have a fit bit type tracker?  Very useful to monitor heart rate.  Blood pressure machine also useful (whole family can use) & can help form a picture of symptoms & levels.

Some are offered a beta blocker such as propranolol to help relieve symptoms - especially palpitations.  So this may be an option to discuss with doctor.

I was given high dose of propranolol & then abruptly taken off (by specialist) This triggered migraines (the sudden stopping) so always reduce slowly.  

[Pussycatlou in reply to PurpleNails]

she has to keep a diary and when symptoms come on she has to write what she is doing at the time and what her Fitbit is doing. Still in early stages of tests so waiting on a liver scan and cardiac tests. Also dermatology as keeps coming out in severe rashes. She had major surgery in oct and periods started nov and that’s when things really kicked off. Struggling to get out of beds when really bad symptoms which is unbelievably out of character x

[PurpleNails in reply to Pussycatlou]

So she’s already been through a great deal,   (And you)

Stress can trigger / accelerate thyroid issues.

 I once overheard a nurse saying lots of teens start their period just after operation even within hours / days.  Probably not something that recorded or cause been investigated.  

Also very common periods / hormones (birth & menopause too) to affect thyroid.  

[Pussycatlou in reply to PurpleNails]

we supposed to go on holiday soon. A very big expensive holiday that we all desperately need and looked forward to. I’m now wondering whether we should go. She is so much better than she was 2 weeks ago, nausea lingering. Rash started again today she waiting on dermatology for that it keeps coming and going. I should also have mentioned earlier a lot of this started just after hpv vaccine. They thought auto immune response to the vaccine at the time. Sorry to be a pest but you seem very knowledgable with all this x

[PurpleNails in reply to Pussycatlou]

Ask anything, you’re not a pest.

I think possible reactions to HPV vaccines have been mentioned in other posts in thyroid  forum but the search facility on this platform isn’t easy.  

if there if it is a trigger / exacerbating feature it is very rare.   

Where is rash located? Is it itchy? 

A reddish thickening of the skin that resembles the texture of an orange peel is associated with Graves' dermopathy.  This is a results from a buildup of protein in the skin. It often occurs on the shins and on the tops of the feet.

An Itchy rash anywhere & is also quite common often because existing sensitivities are heightened.  

She could try antihistamine to see if this helps.

Pharmacist could advise best tablet and or cream to use (treating as allergic reaction) 

Symptoms have started to ease by the sound of it.  So there no reason to miss the holiday.   Will it be an active or relaxing holiday?  As likely it’s rest she needs, nothing too strenuous.  

Hope you have a lovely holiday.  

[Pussycatlou in reply to PurpleNails]

the operation she had was complex knee surgery and more to get so it will mostly be relaxing as she has to be careful. Rash was horrendous in March on her face, like hives that went into sores. Dermatology gave advice on antihistamine and cream and it went with no scarring thank goodness. Few weeks ago she said mum I have more of that rash on my back which is now almost gone and today it’s started on face again. The reason we know she is short stature is due to her knee surgery she gets regular X-rays and on last visit we learned growth plates closed. She is tiny, hubby and I are not tall but not really short either. When I read about overactive thyroid and how it can affect growth I did wonder about that too. I’m lucky paeds are taking her symptoms seriously and investigating. My gran and auntie both had overactive and auntie had partial thyroidectomy x

[Pussycatlou in reply to PurpleNails]

can I ask another question please. Based on the little results she has could she be subclinical hyperthyroidism and if she doesn’t need treatment for that should she still be monitored? Does subclinical usually progress to hyper? Sorry all the questions x

[PurpleNails in reply to Pussycatlou]

Sub clinical hyper mean the TSH is abnormal (low) but the FT4 is in range.

If the  FT3 is tested bad that was over range, that would be hyperthyroid (or T3 thyrotoxicosis) 

It’s really hard to predict if levels will continue to rise or if they start to drop.  That why antibody testing would help.  Monitoring to see what FT4 & FT3 will be a deciding factor too. 

The TSH responds to thyroid levels & not the other way around. TSH (thyroid stimulating hormone) is a pituitary hormone and when thyroid rise it lowers signalling the thyroid to produce less.

Then if the levels drop the TSH can be slow to respond. It’s unreliable. I’ve heard of lots of people being starting on medication (carbimazole or PTU antithyroid) when TSH low - even when FT4 & FT3 in range.

Waiting for TSH to be undetectable isn’t right approach it should be based on what the FT4 & FT3 are doing and why. It’s is usually the first to change.

I had undetectable TSH & it was missed, about 4 years later when FT3 was nearly double range It was noticed & I got treatment. (Mines not autoimmune)

Did you have a post on thyroid forum? If I remember it got a bit iodine crazy - did you delete it?

[Pussycatlou in reply to PurpleNails]

I’m sorry I did delete it, the iodine stuff was overwhelming me a bit. I actually a nurse but with very little knowledge of endocrinology and I’m little by little trying to get me head round it. Her symptoms are mostly stable just now. A few bad nausea episodes yesterday and not focusing. Interested to see what her t3 comes back at. Back in March/April tsh 0.64 and t4 13.7 never checked t3, and now tsh 0.3 and t4 19. My gut tells me she is heading for hyper of some kind. Or could this resolve itself? X

[PurpleNails in reply to Pussycatlou]

13.7 could be quite low in range. Depends on range. So try and get hold of range. & they can change depending on machine used.

With your family history of hyper it does seem more likely she’ll have hyper, but that’s not so say it shouldn’t be confirmed & her outcome turns out to be different.

Hyper can be controlled well with anti thyroid if managed appropriately (with frequent tests & careful adjustment). Sometimes the spacing is too great & adjustment not set right, but if you can learn about it you can help ensure it’s on track for her.

There is a good chance of remission. Doctors move to surgery / Radioactive iodine options by around 18 months but many go longer & research says longer improves chances of remission.

Understandable you were overwhelmed regarding other post, they don’t often get so off track like that.

I hope some of the replies were helpful & you haven’t become put off posting on main thyroid UK (TUK) forum. 

Posts can always be closed to replies by admin (made read only) - then the information can remain.

[Pussycatlou in reply to PurpleNails]

a dreadful day today. Called me from school sick and dizzy all day, eyes funny. Tried my best to talk her down but I had to go get her., we nipped home for a bit and she putting ice on her face to cool down. Said heart is racing. She can’t go on like this 😢

[PurpleNails in reply to Pussycatlou]

Sorry to hear this.

Are her eyes red? Feel gritty?

Dry & or watery? either or both.

Any feeling a of eye pressure? 

Any change of appearance in her eyes? 

I have lots of information on eye issues. There can be a thyroid connection, were you warned regarding thyroid eye disease ? (TED) 

[Pussycatlou in reply to PurpleNails]

eyes look ok she just says she sometimes can’t focus and sparkly stars. We got her an eye test last week just so we were sure that was ok and it was. 😢

[Pussycatlou in reply to PurpleNails]

just spoke to registrar t3 normal so they won’t be doing any more thyroid tests . I’m confused as why they wouldn’t even check it again when TSH dropping and t4 rising

[PurpleNails in reply to Pussycatlou]

Was optician aware of hyper results?  

Although it does sound more of vision issue.  TED almost always starts & includes physical eye issues.  

No further tests - That doesn’t sound quite right.  You would think they would monitor until results were back in range - given the hyper symptoms she is having. 

Prehaps specialist assume GP will monitor thyroid function & refer back to specialist if TSH suppressed / FT4 or FT3 above range. 

Failing that there are private options.

Blue horizons will offer tests for children. 

There is a list here of companies on TUK website, but except BH I believe they are over 18s.

Some packages include thyroid function, key nutrients and thyroid Antibodies.  Others basic function only.  some also have discount codes available.

thyroiduk.org/help-and-supp...

You order test online & the kits is send to your home.  You send back sample & results are available online usually quite quickly.    

Adults use DIY lancets but for child you’ll need to arrange venous draw.  You order test online the kits arrives via post sample taken by finger prick (extra fee for private venous draw). Post back and results available online quite quickly.  

[Pussycatlou in reply to PurpleNails]

We actually have private healthcare so that’s good to know. Doc on phone said it’s gut feeling that Graves’ disease but they not testing again as endo said results ok. My concerns are how symptomatic she is x

[Pussycatlou in reply to PurpleNails]

Would graves antibodies show up when tested if TSH low and t3 t4 in range or does it need to be off range x

[PurpleNails in reply to Pussycatlou]

If there is autoimmune activity occurring then yes antibodies if present would show up, even preceding the the levels reaching above range. 

Here a list of the thyroid antibodies: 

TPOab (Thyroid Peroxidase antibodies)

TGab (Thyroglobulin antibodies) 

TPOab & TGab signify autoimmune (both thyroiditis & Graves)

 When hyper Graves suspected 

TSI (Thyroid-Stimulating Immunoglobulin)

TRab (TSH receptor antibodies - measures stimulating, neural & blocking antibodies)

There is a confusing overlap with antibodies. Because TRab can be stimulating on one end but blocking on the other.  

High blocking would result in hypothyroid.   But positive presence of any antibody would confirm autoimmune.  

[Pussycatlou in reply to PurpleNails]

thank you I have took a screenshot of that information. I defo think something auto immune has went on. The rash looked very much like an auto immune reaction. Everything kicked off following her hpv vaccine. X

[Pussycatlou in reply to PurpleNails]

Could she really be having as many symptoms os she ia with TSH 0.3 and t4 19 with normal t3. If still within range why so many symptoms ?

[PurpleNails in reply to Pussycatlou]

It’s still possible.

2 points 

1) The thyroid is not static it fluctuates, both daily & when things affect the body, it can vary further.   Levels may have been higher and falling back into range when tested.  It’s not uncommon for symptoms to linger.

2)  Normal range means 99% will fall into the expected range. Doctors looks at results and if in range will accept as OK.  But we are all individuals and someone’s normal is different to another.  For example in a range of FT4 12 - 22.  Most feel best at 19.5 which is 75% of range but someone’s else’s normal might be 12 or even 11.5

Unless there’s a full history of results few people know what their normal or baseline is, because usually the thyroid is only tested once there is a suspected issue.  

Nutrients are similar in that optimal is usually over 50% of range whereas doctors will clear if in range even if 1 point away from being deficient. 

Ferritin is a common example of this, most ranges are  ng/ml [23 - 300] but under 30 is ferritin deficiency and under 80-100 is associated with hair loss and symptoms.  In addition ferritin can be high if inflammation present & high ferritin, being iron stores, does not always mean iron serum is good too.  

[Pussycatlou in reply to PurpleNails]

can it be as fleeting as symptoms coming and go in a day.,yesterday she was dreadful for a few hours and I had to collect from school. She managed in for last period and came out feeling much better 🤷‍♀️

[PurpleNails in reply to Pussycatlou]

Symptoms can vary & be intermittent with thyroid & with other issues.  It won’t be a case of symptoms only occuring while the level is over a set point & they all disappear once “normal” again. Theres lots of factors involved too. 

[Pussycatlou in reply to PurpleNails]

it’s a science!

[Pussycatlou in reply to PurpleNails]

so something new today. She been having headaches off and on but nothing major. Nausea still there but not too bad, Dizzyness and flushing been fairly bad today but she has been very active but she goes to bed and says mum I’m getting that feeling it’s hard to breathe again. Points to front of her throat. Says it’s right here mum it’s not sore it just feels something is stuck like it’s choking me. I said to her that’s where your thyroid sits!! Is this significant?? Is this a symptom?

[PurpleNails in reply to Pussycatlou]

Swelling or goitre common with thyroid issues.

2 doctors said my neck looked fine.  At another 3rd appointment with a nurse I had taken a large bottle of water & said look at my neck when I drink.  

If you tip your head back and gulp water the thyroid moves & with the swallowing action.  Can sometimes be more visible if swollen.

 It’s low down on neck - I can feel my nodule which is swollen & collar bone with one finger.  On 1 side.  Can’t feel anything on other side.  

Choking sensation / swallowing issues common with thyroid. In more severe cases there can be pain by collar bone. Can grow behind it (rare).

[Pussycatlou in reply to PurpleNails]

I must mention this to paediatrician then when next reviewed. She finishes her 72 hour cardiac monitor tomor and then just wanting in liver scan and she should be back at clinic. I am defo going to push for all the blood tests mentioned. I have started giving her a multivitamin daily. I didn’t think that would do any harm. I just thought it was an odd thing for a child to say and point right where thyroid is.

[PurpleNails in reply to Pussycatlou]

multi vitamins aren’t recommended for lots of reasons.

lots of the supplements contain the less bioavailable forms (they are cheaper)

Most will not contain meaningful levels , won’t help a deficiency.

Things like calcium & iron shouldn’t be supplemented unless known to be low.

I used to take a multi but I finished the bottle I’d brought and brought better versions next time.

[Pussycatlou in reply to PurpleNails]

it won’t do her harm tho will it ? X

[Pussycatlou in reply to Pussycatlou]

I know with my daughter there is a whole multitude of things it could be and prob a wee bit away from diagnosis but my gut feeling is it’s endocrine and it’s thyroid in nature. I’m just trying to gather up a note of all symptoms and have as much information as I can possibly have for the medics. I just want her to feel well again x

[PurpleNails in reply to Pussycatlou]

No it shouldn’t be harmful. 

Unless in contains high amount of iodine.  Look at the % NRV.

Iodine can be complex and unpredictable - but generally extra is not good for hyperthyroid. 

[PurpleNails in reply to PurpleNails]

also biotin can interfere with blood test, especially high doses, but must multi won’t have high dose. it’s best anything with biotin is best avoided a few days before a blood test.

[pennyannie]

Hello Pussycatlou and welcome to the forum :

Since we do not know yet, which antibodies are over range and positive you might like to read around further on both Hashimoto's and Graves and try and understand why her immune system has been triggered to turn and start attacking her body, rather than defend it.

For all things Hashimoto's AI thyroid disease - thyroidpharmacist.com

For Graves - elaine-moore.com