Ask doctor for further tests for my daughter? - Thyroid UK

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Ask doctor for further tests for my daughter?

MrsQ20 profile image
21 Replies

I am writing this because I am concerned for my daughter who is 22.

Her results are here:

Serum TSH level is 4.78 mIU/L [0.3 - 5.0]

Serum vitamin B12 level is 177 ng/l [200.0 - 960.0]

Serum ferritin level 62 ng/ml [15.0 - 350.0]

She has been told everything is in range and no further action. My concern is that I was told my thyroid antibodies were over 1000 last March and I started on Levothyroxine in January after getting advice on here and questioning my results and symptoms with my doctor.

I suggested they check her thyroid because she was feeling very low and has suffered from extreme menstrual pain for a number of years. She has been on all sorts of different contraceptive pills and painkillers to try and sort this and had a laparoscopy last August to check for endometriosis which they did not find. She has quite a sensitive stomach and is prone to bloating. She has been complaining (more specifically in last few months) of aching limbs and often just not feeling well. We did a restricted diet for her when she was aged 7 as a kinesiologist suggested she had leaky gut.

I have said I think she needs to return to doctor for T3, T4 and antibody testing. (She had her test at 7.30am on an empty stomach as I had told her to do this.)

Any thoughts would be appreciated.

Many thanks

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MrsQ20
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21 Replies
SeasideSusie profile image
SeasideSusieRemembering

MrsQ20

I'm just off to bed so my reply is very short as I just want to say

She has been told everything is in range and no further action.

Serum vitamin B12 level is 177 ng/l [200.0 - 960.0]

First of all she should ask how on earth that result can be in range when it's below the low limit.

Then she should ask her GP to test for B12 deficiency/Pernicious Anaemia.

She should check for signs/symptoms here:

b12deficiency.info/signs-an...

and list any that she may be experiencing to discuss with her doctor.

She could very well need B12 injections.

MrsQ20 profile image
MrsQ20 in reply to SeasideSusie

Thank you. We only just saw the results as she requested online access so we saw that they were different to what we had been told. I'm on higher alert to my three daughters and their health since my autoimmune thyroid was discovered - as know it means they are more predisposed to it.

Boon79 profile image
Boon79

Everything in range? Really?You don’t need a medical degree to see that her results clearly ARE NOT in range.

All results are low. Even Ferritin is low in the range! I’ve just posted a similar post about my haemoglobin being ‘in range’.

Your poor daughter. 22 years old and getting fobbed off!

I agree that she would benefit from B12 injections. B12 is fairly harmless but has huge benefits.

Also, if my TSH is more than 1, I’m on the floor!

I too suffer from severe bloating. I’ve cut out lactose, reduced gluten (difficult going gluten free), take probiotics and am currently taking iron daily. I have horrendously heavy periods, and gyno told me that I have a ‘bulky womb’.

Has your daughter been tested for food allergies? E.g gluten/ lactose intolerance ?

I would return to the doctor and dispute these results.

I paid for a blood test with Medichecks. Full thyroid and vitamin check. They will flag up any out of range readings to take to your doctor. I am low in Vitamin D and take daily supplements (picked up deficiency through Medichecks test).

MrsQ20 profile image
MrsQ20 in reply to Boon79

Thanks for your reply. I agree - it is the same old story - 'normal/in range'. It is just so frustrating. I know she is not at the optimal health she should be for her age and it is hard work unpicking why that it is - so good to get some guidance from here. I looked on Medichecks but was confused on best test to do.

MrsQ20 profile image
MrsQ20 in reply to Boon79

So daughter has had a phone call appointment where dr was very patronising- told her that her mother shouldn’t worry about thyroid all the time, that her symptoms are normal life feelings and that she will put her on the pill as well as the coil to adjust her hormones as she says her menstrual pain is in her head. She said her bloods are normal and refused to do any further testing. Literally I’m livid!

humanbean profile image
humanbean in reply to MrsQ20

You need to change your doctor. Or your daughter does.

humanbean profile image
humanbean in reply to MrsQ20

I think you need to make a complaint about the patronising, the gaslighting and the lies.

MrsQ20 profile image
MrsQ20 in reply to humanbean

Honestly I can’t believe her attitude!

humanbean profile image
humanbean in reply to MrsQ20

One thing I would suggest that you or your daughter can do without involving doctors is to optimise as many vitamins and minerals as possible, which means you would have to get tests done. There is a big difference between having results which are just in range and having results which are optimal. Personally I believe that optimal nutrients keep my own chronic pain levels a bit lower than they would be otherwise.

humanbean profile image
humanbean in reply to MrsQ20

she says her menstrual pain is in her head

I was told the same kind of rubbish repeatedly.

There are no blood tests for most kinds of ovarian cysts (PCOS may be an exception, I don't know much about it), endometriosis, adenomyosis, or fibroids. And for endometriosis (and possibly adenomyosis, although I'm not sure about that) there are no tests for it at all - it doesn't show up on ultrasound, X-rays, CT scans, or MRI scans.

The only way that endometriosis can be diagnosed is by a surgeon doing a laparoscopy and actually opening someone up to look for it. And they can still miss it even then.

The best treatment for endometriosis is for it to be excised (cut out), but there are many surgeons who still think laser treatment will do the job. But endometriosis is like an iceberg - you can cut off the top and there is still a lot of diseased tissue underneath.

Adenomyosis (endometriosis of the muscular walls of the uterus) is usually only discovered when the uterus is removed during hysterectomy, although perhaps things have moved on since my day.

If your daughter is suspected of having endometriosis then she can get confirmation from the surgeons and centres mentioned by these people :

bsge.org.uk/

and the accredited centres and surgeons for doing such surgery are listed here :

bsge.org.uk/centre/

Don't allow just any old surgeon to look for problems (if surgery is justified in your daughter's case) - get someone to do it who has had extra training.

MrsQ20 profile image
MrsQ20 in reply to humanbean

Thank you so much for your really helpful reply. Why do women treat other women in this way?!

humanbean profile image
humanbean in reply to MrsQ20

Don't know. But I have found male and female doctors to be very similar and equally bad.

SlowDragon profile image
SlowDragonAdministrator

Can you go with her to see different GP

She needs FULL testing for pernicious Anaemia, Full thyroid testing - Ft4, Ft3 and BOTH TPO and TG antibodies tested plus vitamin D and folate too

MrsQ20 profile image
MrsQ20 in reply to SlowDragon

Thanks for your reply. Yes I think that is worth a try first.

MrsQ20 profile image
MrsQ20 in reply to MrsQ20

We are going to try and book another appointment and I will be on speakerphone with her.

SlowDragon profile image
SlowDragonAdministrator in reply to MrsQ20

Suggest you write down short list of important points to raise on phone call

Obviously B12 is clearly deficient

Essential to test Full thyroid including antibodies

Vitamin D and folate

The fact you have Hashimoto’s...it’s very genetic

If you need private testing

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

MrsQ20 profile image
MrsQ20 in reply to SlowDragon

Thank you for your help and advice

MrsQ20 profile image
MrsQ20 in reply to SlowDragon

Further to our discussion and your helpful advice - see my reply to Boon79 about what dr said. I’m so cross! Why does this have to be a battle all the time? I swear I have a black mark against my name at the surgery for being a worrier and interferer. It’s called an informed person!

SlowDragon profile image
SlowDragonAdministrator in reply to MrsQ20

NHS obligated to treat confirmed deficiencies ...ie B12

Down to the individual to get other vitamins to GOOD levels

MrsQ20 profile image
MrsQ20 in reply to SlowDragon

Thank you

hyllet profile image
hyllet

I would today go and buy supplements för B 12 i f you can get it up whit supplements u dont need shoot with b 12 . so for your daughter buy it today andtake as many as u can

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