Advice please

[Sandibo]

Hi , looking for some advice , my daughter was diagnosed with an underactive thyroid at 9 years old ( she is now 11) she currently takes 75mcg of levithyroxine daily , she has a small cyst on her thyroid & currently has no sign of antibodies, we were advised at diagnosis that impaired thyroid function was down to a virus despite repeated early years visits to the doctor for hair loss & excessive weight gain despite a healthy no treats at all diet , my daughter continues to have brittle damaged hair & despite daily exercise consisting of dancing , swimming , running & personal training along with a healthy diet she continues to gain weight week on week which is now having an effect on her daily life as she is now at high school , we have previously been referred to a dietitian who commended her on such a healthy diet & could find no reason for her abdominal bloating , endocrinologist checks her TSH & T4 levels twice yearly & as long as TSH is below 5 they offer no other solutions to her assist with the weight gain , any ideas or suggestion are welcome as I am at my wits end now , regards Sandra

[Clutter]

Sandibo,

What are your daughter's recent TSH and FT4 results and ranges? It sounds to me as though she is undermedicated.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

[Sandibo in reply to Clutter]

Thanks for replying, she is due at the hospital next month to be checked , as long as it’s under 5 the the doctor will not change dosage , I’m sure the shake their head when they see me coming with my list of questions & because she is a minor i can’t have her tested privately, Thanks Sandra

[Clutter in reply to Sandibo]

Sandibo,

Show them the Pulse article, they are undertreating your daughter. Ask to see a consultant endocrinologist if your daughter is being treated by a paediatrician.

[greygoose]

It could very well be that your daughter is over-exercising. Exercise uses up our T3, so the harder the exercise, the more t3 it uses. If she is having difficulty converting the T4 she's taking, to the active hormone T3, all that exercise she's doing will make her more hypo, and therefore put on more weight. It would seem to me the first thing you should do is get her FT4 and FT3 tested at the same time - privately, if your doctor won't do it - and see how well she's converting. It could also be that she's not ingesting enough calories, which will have a negative effect on conversion.

[Sandibo in reply to greygoose]

Thanks for replying , I have tried to have her tested privately & have been refused as a special license is needed for a minor , I have read before about exercising & conversion but without any blood results I’m very much at a loss , Thanks Sandra xx

[Clutter in reply to Sandibo]

Sandibo,

Unless her TSH is 0.2-1.0 she is undertreated. You don't need more tests, you need her doctors to increase her Levothyroxine dose.

[Sandibo in reply to Clutter]

i understand that but without testing to find out her current levels then my hands are tied & her levels are not due to be tested until next month & the endocrinologist will not increase her medication if she is anything between 1 & 5 as she said this is the acceptable level range , I have tried to have her tested / treated privately but unfortunately due to her age no one will treat her

[Clutter in reply to Sandibo]

Sandibo,

Try and get a second opinion. It is ridiculous to dogmatically state 1 - 5 is acceptable when your daughter may feel better and do better with a dose increase and lower TSH.

Have you thought of ordering fingerprick home tests? You needn't mention that they are for a minor.

Who told you that you cannot have your daughter privately tested as she is a minor anyway?

[Sandibo in reply to Clutter]

There is not an endocrinologist in Scotland that will see/ treat a minor I have tried all the private hospitals , we are going to contact GP on Monday to ask if when she is due her blood tests if we can pay to have T3 checked & take it from there , I feel as if it consumes me every day the amount of research & reading I do , I have loads of questions to ask but the NHS services just don’t want to listen , I have a direct line to the endocrine nurses if I have any questions but they can’t possibly answer them without a full picture of what’s going on , she is at a stage where her weight is really bothering her as she’s not able to dress like her peers , it’s really difficult to watch & despite expressing this to the consultant nothing is done, thanks for listening

[shaws Administrator in reply to Sandibo]

The private tests Clutter suggests are home pin-prick finger tests and it is good to be well hydrated a couple of days before the blood draw. It should also be at he very earliest and if taking thyroid hormones you allow a gap of 24 hours between last dose and test and take afterwards.

[Jazzw in reply to Sandibo]

You don't need a private hospital or private endo to get private blood tests done. See: thyroiduk.org/tuk/testing/p...

I've used both Blue Horizon and Medichecks and can recommend both - all that's needed is a finger prick and the patience to fill a tiny vial with blood, then you post the sample to the lab.

[greygoose in reply to Sandibo]

You don't need testing to just try reducing her exercise to see if it helps her feel better. Just common sense would tell you that's a viable option.

[marsaday]

Have you not asked for her blood tests results from over the years. I would ask for the latest copies at least. You are legally entitled to them.

The only option open to yourself if no one will listen is to try an increase for yourselves, only doing a 25mcg dose increase initially.

The finger prick test sounds a very good option to discover where her Ft3 is at. This may well be key in understanding the full picture. Also it would be useful to find out if she has any antibodies being produced by the thyroid.

I imagine treatment options for children are even more rigid than it is for adults. They will just be too scared to budge from the TSH worship and unable to think outside of the box.

[Sandibo in reply to marsaday]

I can’t increase her medication on my own as she will require her prescription sooner & this is closely monitored

[shaws Administrator]

I agree with Clutter who says your daughter is undermedicated. The aim (after being diagnosed) is a TSH of 1 or lower. This is an excerpt re 'permission':

"Before a doctor, nurse or therapist can examine or treat your child, they need consent or agreement. Sometimes children can give consent for themselves, depending on their age and how well they understand.Sometimes you will be asked to give consent for them as their parent."

nhs.uk/nhsengland/aboutnhss...

Members on here have found that most 'experts' are not so expert and prescribe insufficient dose which keeps them from recovering with relief of all symptoms. They also are mistaken when they keep the TSH in a range and it at the top of it.

When we are hypothyroid the two important hormones are T4 and T3. T4 is levothyroxine (or thyroxine) and is inactive (or prohormone) and has to convert to T3. T3 is the only Active Thyroid Hormone and it is needed in our billions of T3 receptor cells. The heart and brain need the most. If we exercise before we are on an optimum dose, as greygoose states, we reduce T3 as it the 'energy'.

When hypo everything slows down, i.e. pulse/temp and energy, and digestion,etc. As T4 is converted to T3 (and on optimum dose) unexplained weight gain can reduce, pulse and temp come back to normal and relief of clinical symptoms. Dieting is useless if we're not on sufficient hormones.

nhs.uk/nhsengland/aboutnhss...

Excerpt:

Thyroid patients, in particular, complain regularly about bloating, because of a thyroid dysfunction -- hypothyroidism especially -- is associated with water retention and weight gain from excess water. According to the American Thyroid Association, hypothyroidism can cause as much as five to ten pounds of weight gain just from the excess water alone. Some of that water weight gain can be in the face, causing puffiness in the face and around the eyes, fluid retention and swelling in the hands and feet, and abdomen.

How do you banish bloat? Here are some helpful tips.

verywell.com/banishing-bloa...

[SlowDragon Administrator]

Essential to get her vitamin D, folate, ferritin and B12 tested

As well as FT3 obviously

Would go down the Medichecks or Blue Horizon route

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

[diogenes Remembering]

There's an important thing to realise about prepubertal children and their thyroid levels suitable for health. The average FT3 suitable for such young people is about 15-20% higher than when they become adult. This means that, for their weight they need a little more T4 if hypothyroid to get the FT3 up to a suitable level. TSH and FT4 are no use as diagnostics in this situation - its the FT3 that crucially has to be measured.