Any Advice for my daughter, please!

Hi there,

My 7 year old daughter showed symptoms of nipple discharge last summer (2015) so after a referral to a Paediatrician, a scan confirmed breast tissue (advanced for her age) and requested blood tests and scans of her wrists.

Wrist x-rays showed her bone growth was 6 month advanced for her age. The first batch of bloods showed 'High' TSH normal T3 and T4 and 'excessively' high Prolactin levels. These were repeated the following week which then showed she had High TSH (6) but everything else was normal. She had repeat bloods a few weeks later, TSH was 45 and everything else was normal.

Christmas eve...her paediatrician diagnosed her with Hypothyroidism and advised that the nipple discharge and sign of early puberty were probably a result of this and seeing her pale grey skin (our daughter is suffering from fatigue and general tiredness) she requested more bloods on the day - results were TSH down to a normal range so the diagnosis was no more.

We have been asked to keep a record of her fatigue and return in April for more blood work but we have lost a very sprightly 7 year old and instead have a very tired little girl and feel we have been left to cope with this alone. Her paediatrician has now actually said her tiredness is just like any other child her age over the festive season so its quite normal.

To add this, her Dad has Hypothyroidism which sadly took many many years to get diagnosed.

We have made an appointment with our daughters GP at the end of January.

Any single piece of advise would be very much appreciated.

Regards.

[shaws]

Welcome to our forum Derbyshiremum

Your family will obviously be very concerned about the change in your daughter. We know our children far more than anyone else.

Ask your doctor to do an Antibodies blood test. If he can also give you a copy/print out of the Expert's opinion too and post both results with the ranges for comments from members.

You will find out that diagnosis of hypothyroidism depends wholly upon the whereabouts of the TSH which is from the Pituatary Gland which works overtime when thyroid gland is failing by raising the TSH level. Before the blood tests were introduced doctors knew all of the clinical symptoms and medicated upon them(even on a trial basis but nowadays it's all upon the TSH with no account taken of clinical symptoms.

When your daughter has a test for thyroid hormones the test should be as early as possible and fast (she can drink water) and if/when she is on levothyroxine allow 24 hours between last dose and the blood test.

Ask GP, as well as the antibodies ask for Vitamin B12, Vitamin D, iron, ferritin and folate to be checked.

Always get copies of tests with the ranges.

The ranges are important, for instance the word 'normal' in the blood tests only mean that the results are within a 'range'. It doesn't inform us if it is very low or the whereabouts in the range.

Some people have clear clinical symptoms and are told your results are 'normal' when they feel anything but normal.

Others will respond as we, thankfully, don't get many queries about children.

"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

[Hidden in reply to shaws]

Thank you so much for your quick reply.

I have read about the Antibodies testing so I will be sure to request that along with the others you have mentioned on our visit to the GP.

I'm trying to hard to track down my daughters results but the GP doesn't have the copies from the hospital so I'm trying to get them from the hospital, leaving messages, etc.

Thank you again.

[shaws]

Another thought. Ask your doctor did the 'expert' do a Full Thyroid Function Test? i.e. including a Free T4 and Free T3. If not ask for these to be done too.

T3 is the active hormone we all need in our receptor cells for us to function normally. It should not be at the 'bottom' of the range. Levothyroxine is T4 - the other thyroid hormone which has to convert to sufficient T3.

p.s. I hope your husband is fine as most do well on levothyroxine whilst others may need an alternative (which is like getting blood out of a stone).

[Hidden in reply to shaws]

Hi,

I don't know all the results of her T3 and T4 but we got told they were normal. The only one I have a record of was the last one taken on Christmas eve with was a T3 of 19.8 and the TSH was 3.15 which they said was normal (it had ranged from 6 to 45 on previous tests.)

I look forward to getting the full results (hopefully soon!) so I can share them on here which will hopefully paint a clearer picture.

My husband still struggles actually (despite leading a very active life) but sadly thats also due to anxiety which developed with his long 'battle' with the doctors before his diagnosis.

Thank you again for your advice.

[shaws in reply to Hidden]

Your husband should also have 'an update' on his hormone replacements as anxiety is also a clinical symptom of hypothyroidism. Ask his GP to do a Full Thyroid Function Test which includes TSH, T3, T4, Free T4, Free T3 plus his vitamins/minerals. Some labs wont do a FTF test but you can get a private one from one of the recommended labs which give a small discount. The following link read about knowing the Free T3 level.

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

hormonerestoration.com/Thyr...

An example of a range:

FT4 = FREE T4

Thyroid hormones not bound to proteins. FT4 lowers when the thyroid is struggling.

The approx. reference range for this test is 10 to 24

So if our FT4 is 10 we will still be pronounced as being 'normal' even though teetering on the edge when, if Hypothyroid, we would feel much better if it towards the upper end of the range.

It's a big learning curve if we want to get better if we remain undiagnosed or undertreated due just to the blood tests alone.

[Killnana in reply to shaws]

Levothyroxine is actually a medication synthetic T4. Thyroxine (T4) on cbc...I was told not to look at that because what the concern is the TSH and antibodies or something like that. The GP got very studdery when I asked about it on my copy of results, she even put her hand over it to make the point. My gut told me something is not right about her response...any advise?

[SeasideSusie Remembering in reply to Killnana]

Killnana You have put your question in the middle of a 2 year old thread which will remain largely unseen. It would be best if you started your own thread so it will be at the top of the new posts page and should get some replies.

[shaws in reply to Killnana]

Do you realise you are on a two year old thread? You should make a new post of your own, so that you get more responses Copy and paste onto a new Post.

Levothyroxine is a synthetic thyroid hormone and consists of T4 only. It should convert to T3 which is the only Active thyroid hormone and is needed by our T3 receptor cells throughout our body. Our metabolism cannot work if we don't have the sufficient energy' (T3) for us to function.

Some of us don't have antibodies but have symptoms. If we do have antibodies and TSH isn't high enough (10) they should prescribe due to having antibodies.

The point of taking replacement hormones is not to get the 'correct' TSH but relief of clinical symptoms. Usually that's when our TSH is 1 or lower, but many doctors think that it's fine if it is between the bottom of the range and around 5 which is approx the top of the range. However I have no idea why in the UK they make patients wait till TSH is 10 before prescribing. The most important tests which are rarely taken is the Free T4 and Free T4 and I'll give you a link to read about the reason.

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

[Hidden]

Hi there,

Getting him to the doctors isn't easy but I will try again with him. I think its a shame to 'accept' that not feeling right is a way to live.

With regards to my daughter, I have just been looking at a home test for the tests you mentioned simple to reduce her anxiety (she has now developed the anxiety after recent visits and works herself up so much, she hyperventilates and has even passed out during the tests) and to probably avoid the battle with our GP at trying to get the tests.

The test I have just found includes the following -

Thyroid Stimulating Hormone (TSH)

Free T4

Free T3

Total T4

Thyroid Peroxidase Antibodies

Thyroglobulin Antibodies

Ferritin

Vitamin B12

C Reactive Protein

Folate

All done using a finger prick sample!

Introductory Offer.

I'm aware it is expensive but I do feel it anything does show up as abnormal, it can perhaps help us with the GP at the end of the month.

Thank you again for all your information on everything.

[shaws in reply to Hidden]

Just for information I think you will find the following of interest:-

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

[Hidden in reply to shaws]

Thanks so much. I'm gathering up some fantastic information and I'm planning on forwarding everything to our GP prior to our appointment...which may or may not work in our favour!

[shaws in reply to Hidden]

He will probably stick to the guidelines.

[greygoose in reply to Hidden]

Tell him he's doing for his daughter, because if he has high antibodies, they're more likely to take his daugher's problems seriously, because Hashi's runs in families.

[Hidden in reply to greygoose]

Thank you

[DiNiro]

I have read verious times that thyroid disorder often goes in the family. I think it's very important for your daughters doctor to understand this hereditary disease.