Angry and frustrated again!: Hi. So the doctor... - Thyroid UK

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Angry and frustrated again!

Catlover3
Catlover3

Hi. So the doctor finally agreed to refer my daughter to an Endo and a Neurologist regarding symptoms she has, only for them both to be cancelled by the hospitals. She is having an ultrasound on her neck due to the enlarged glands which have been like that for a very long time. In a way I hope something does show up on the scans as we are going round and around getting nowhere and she is slowly getting worse and worse. The doctor has changed her contraceptive pill because of her having a hemiplegic migraine and put her on cerelle which is the same as Cerazette. She suffers with really heavy periods but with Cerazette she bled every day for 6 months. Sometimes it was just spotting but she had to wear protection every day. She was then on Yasmin which stopped the problem but increased the risk of strokes, hence the change to the mini pill again. As she is not going to be seeing an endo the latest recommendation is that she could be referred to an ME clinic. I am probably going to get her tested for Lyme's disease as this is something which also has the same symptoms but has not been ruled out. I feel absolutely worn out with the stress and worry and cannot see an end to it all. My other daughter has ME/Fibromyalgia, endometriosis stage 4, POTS, seizures, and having to deal with both of them and all their problems on my own without any family or friends nearby is taking its toll on me as I have hashi's myself.

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SlowDragon
SlowDragonAdministrator

She needs ferritin tested, especially she as has period problems

Also both TPO and TG thyroid antibodies, FT4, FT3 and Total T4

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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 ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after

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

What supplements does she take?

Hi .These results were taken in January privately but of course came back as satisfactory. She takes ferrous fumerate 210mg, methylfolate, viatmin c, d, biotin (not taken 4 days before testing) B12 self injection every 8-10weeks. Gluten/dairy free, no drink, drugs,caffeine. I think that after her scan if nothing is obvious then its test for lymes and self treat with my ndt. Not keen on doing it but cannot cope any longer with her deteriorating before my eyes any longer.

TT4 130 (59-154)

TSH 2.37 (0.27-4.2)

FT4 14 (12.0-22.0)

FT3 4.7 (3.1-6.8)

Thyroid antibodies 34 (0-115)

Thyroid Peroxidase Antibodies 25.4 (0-34)

Ferritin 56 (13-150)

SlowDragon
SlowDragonAdministrator
in reply to Catlover3

Her FT4 and FT3 are on low side

Perhaps start with Levo

See how she gets on

greygoose
greygoose
in reply to Catlover3

That TPOab is so near the top of the range, I would take it that she does have Hashi's. Antibodies fluctuate all the time, and as you have Hashi's, the odds are she does, too.

shaws
shawsAdministrator

I am very sorry that both your children have health issues at a young age. However, I note you mention heavy periods for one and ME/fibro for the other and I will give you a link regarding this.

It is by an Adviser to Thyroiduk.org.uk who was an expert in Fibro. ME/CFS/Fibro and Thyroid Hormone Resistance which few doctors really know about and these were named about ten years after the introduction of blood tests and levothyroxine instead of NDT, Natural Dessicated Thyroid Hormones which contain all of the hormones a healthy thyroid gland would produce if healthy. I shall also give you a link of clinical symptoms. Not many doctors know much at all about dysfunctions of the thyroid gland but who will diagnose symptoms as something other than connected to the thyroid gland.

web.archive.org/web/2010103...

web.archive.org/web/2010103...

web.archive.org/web/2010103...

thyroiduk.org.uk/tuk/about_...

Your daughters need the following to be tested. GP or lab may not but I'd try my best. We also have labs do the tests but with two daughters maybe a bit expensive for you.

The test should be at the very earliest possible, fasting (they can drink water) and if taking thyroid hormones they'd allow a 24 hour gap between last dose and test and take afterwards.

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

GP should definitely test B12, Vit D, iron, ferritin and folate.

The most important and FT4 and FT3 and antibodies.

When you get the results, please put them on a new post with the ranges. Ranges are important for members to comment upon them.

thyroiduk.org.uk/tuk/about_...

Catlover3
Catlover3
in reply to shaws

Hi. These are the last test results which were done privately in Nov 2017 for my eldest daughter whom has ME/Fibro, stage 4 endometriosis, POTS, seizures. She is awaiting a mri scan for the endometriosis as they don't want to operate again until they know what organs are affected. Last op was 18 months ago and the surgeon was unable to remove a lot of it as it is very deeply embedded. She also has a loop recorder in her chest as we don't know whether her heart is causing the seizures or whether its neurological. She is in a lot of pain with the endometriosis and has to take naproxen which doesn't even dull the pain sometimes. I would like her to get everything tested again but its very difficult when money is really tight and the three of us are unwell. The gp's are reluctant to order blood tests and will only do them once a year for thyroid and even then its only the TSH!

HAEMATOLOGY

Vitamin B12 * 809 pg/ml 197 - 771

Note amended reference range due to change to

Gen II assay.

BIOCHEMISTRY

Folate (serum) 3.2 ug/L > 2.9

Note new reference range effective 03/04/2017.

If no change in dietary habits,a normal serum

folate makes folate deficiency unlikely.

FERRITIN 28 ug/L 13 - 150

Optimum Ferritin level for females : >27 ug/L

C Reactive protein 1.9 mg/L <5.0

ENDOCRINOLOGY

TOTAL THYROXINE(T4) 86 nmol/L 59 - 154

THYROID STIMULATING HORMONE 2.19 mIU/L 0.27 - 4.2

FREE THYROXINE 14.8 pmol/l 12.0 - 22.0

FREE T3 5.0 pmol/L 3.1 - 6.8

IMMUNOLOGY

THYROID ANTIBODIES .

Thyroglobulin Antibody 11.2 IU/mL 0-115

Method used for Anti-Tg: Roche Modular

Thyroid Peroxidase Antibodies <9.0 IU/mL 0 - 34

Method used for Anti-TPO: Roche Modular

shaws
shawsAdministrator
in reply to Catlover3

All of your family members and yourself have suffered too much. Your head must be spinning. As I am not too knowledgeable about blood results, I'd suggest you copy and paste from biochemistry on above onto a new post and more members will respond. I am assuming test was at the earliest, fasting and no medications before but taken afterwards. TSH is too high.

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