Not yet diagnosed with a thyroid condition

[MishaT]

Hi all, I am new. I am a 27 year old female and have felt a number of symptoms since I was 18.

Heavy periods draining the life out of me

Feeling cold and hot at times

Unrefreshing sleep

Aching and stiffness in joints

Eczema

Tightness in muscles, have hypermobility syndrome

Weakness in wrists, ankles and knees

Brittle nails

Dry skin

Flaky skin

Blotchy skin

History of endometriosis

Dryness at backs of eyes

Symptoms of IBS

History of ovarian cysts

So my previous results are

2012

Serum TSH - 5.6 (0.2 - 4.2)

Serum FT4 - 15.6 (12 - 22)

Ferritin - 23 (30 - 400)

MCV - 78.5 (80 - 98)

MCHC - 388 (310 - 350)

Serum folate - 1.8 (2.5 - 19.5)

Vitamin B12 - 227 (190 - 900)

Serum calcium - 2.14 (2.20 - 2.60)

Serum calcium adjusted - 2.15 (2.20 - 2.60)

Cortisol - 248 (140 - 700)

2015

Serum TSH - 2.3 (0.2 - 4.2)

Serum ferritin 31 (30 - 400)

Serum folate - 2.2 (2.5 - 19.5)

Any advice appreciated, thanks for reading

[Mary-intussuception]

I would ask for the following blood tests:

Thyroid Antibodies : TPO and Tg ALSO: Vitamin D.

Also tests for Pernicious Anemia.

Did your GP do all your blood tests? Have you discussed these results?

What supplements have been prescribed?

What diagnosis has been given so far?

I would also be askig for a referal to an Endocrinologist.

[MishaT in reply to Mary-intussuception]

Thank you, I intend to ask for TPO and TG antibodies at my next appointment, they were previously done and shown to be elevated. I also have pernicious anaemia and GP did all these blood tests. I was told that the nurse left me a message on my mobile regarding these results and even though the GP surgery has my number I received no such message on my mobile at all. No diagnosis given. I take ferrous fumarate and cholecalciferol, magnesium and vitamin E

[Mary-intussuception in reply to MishaT]

Has GP prescribed Folic Acid.

What's happening about low Calcium?

You need Vitamin D tested as well.

Also possibly other tests.

Google search reasons for low calcium.

Why haven't you had more recent tests than 2015? And none between 2012 and 2015 ?? Who's monitoring Pernicious Anemia?

[MishaT in reply to Mary-intussuception]

Thank you, no folic acid has been given since the GP said the folate was only just under range. Calcium was passed off as just below range as well and I have basically just been sent away from GP appointments as having some sort of health anxiety. Haematologist is monitoring pernicious anaemia

[Mary-intussuception in reply to MishaT]

Why don't you ask Haematologist to address the other deficiencies. I would.

See a different GP ?? If GP won't test Antibodies ask for referal to Endocrinologist. Or ask Haematologist to have a word.

Why no up to date bloods if under care of Haematology? Doesn't make sense.

[MishaT in reply to Mary-intussuception]

Thank you, I will ask for referral to endocrinologist next week. The haematology department used to write to me about my latest results but my appointment to see him keeps getting moved and as a result I haven't been seen since the start of last year when the 2015 bloods came back

[Clutter in reply to MishaT]

MishaT,

Haematologist should be monitoring B12 and folate levels together. If folate is deficient B12 won't work.

Ranges are there for a reason. Below range is deficient. Your GP should prescribe 5mg folic acid for a couple of months to correct folate deficiency and calcium for a month or two to correct calcium deficiency. Folate and calcium levels should be monitored periodically to ensure they remain within range.

[Clutter in reply to MishaT]

MishaT,

If TPOab and TGab wrere previously over range it confirms autoimmune thyroiditis (Hashimoto's). There's no point in repeat testing once you've had a positive result as antibodies will fluctuate.

If you didn't receive the message you need to contact your practice and tell them you didn't get the nurse's message and ask to speak to the nurse or GP about your results and diagnosis.

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

[MishaT]

I also have fluctuating cortisol results from saliva tests. One lot of results came back saying I had low cortisol, another one done 1 year later said I had high cortisol?

[Mary-intussuception in reply to MishaT]

I don't know much about cortisol testing.

Sounds to me like you need up to date tests and to keep pestering for your Haematology appoinment.

You haven't had FreeT3 tested either have you.

Take your temperature first thing every morning and keep a record of any under 36.5 (remember to add one if taking underarm. If under tongue then as read.)

Keep your written list of all your symptoms with you. (add low temperature to list). Show list to every doctor you see. Keep on - politely but firmly - asking for your symptoms to addressed.

Hope you get proper care soon.xx

[SlowDragon Administrator]

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

Obviously with one autoimmune disease already (Pernicious Anaemia) you are more likely to have another

Low calcium is likely due to low vitamin D

Low vitamin D, folate, ferritin or B12 all stop Thyroid hormones working, so then bloods do not reveal how hypo you actually are

Your GP has been extremely negligent ignoring below range results

See if you can get full thyroid and vitamin testing from different GP. Unlikely to get FT3

Private tests are available

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. This gives highest TSH, lowest FT4 and most consistent results

Link about antibodies

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

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

Assuming you have raised antibodies this is Hashimoto's also called autoimmune thyroid disease

Read as much as possible

[MishaT in reply to SlowDragon]

Thank you, antibodies were tested some time ago and shown to be elevated

[SlowDragon Administrator in reply to MishaT]

Then you should have been started on Levothyroxine

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

Hashimoto's affects the gut and leads to low vitamin levels

Low vitamin levels stop Thyroid hormone working

Then blood tests do jot reflect accurately how hypo you might be.

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

As you have B12 injections its recommended to also supplement daily good vitamin B complex. One with folate

This keeps all the B's in balance and will help your low folate

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

See a different GP and ask to be started on Levothyroxine (50mcg is standard starter dose)

Vitamin D essential to test

hypothyroidmom.com/92-of-ha...

PCOS is also linked to Hashimoto's and to gluten intolerance