Despite being on medication does anyone still get under active thyroid symptoms

[Thebookworm]

I still get symptoms of fatigue and feeling cold (despite it being winter and having had snow) for many months, yet my last blood test results came back as normal.

Does anyone else have something similar?

[greygoose]

There's no such thing as 'normal'. It just means 'in-range'. But, where were the results in the range? Did your doctor do FT4 and FT3, or just TSH? If he's just dosing by the TSH, then that will keep you sick. How much levo are you actually taking?

[Thebookworm in reply to greygoose]

Doctors just said normal they didn't go into detail, I've made another appointment to go back and discuss it! I'm on 75mg.

[greygoose in reply to Thebookworm]

You should always ask for a print-out of your results, with every blood-test. Don't wait for them to give you the details, because they probably won't. They probably would rather you didn't know because then you can't argue about them. But, you need to know exactly what was tested and exactly what was tested. You need to keep your own records, and on every print-out make notes on how you feel and what your dose is, that's the only way you'll be able to be pro-active in your treatment. If you live in the UK, it is your legal right to have a copy of your labs.

[SlowDragon Administrator]

The fact that there's just over 75,000 members on this thyroid forum, tells you that, yes very many people struggle to regain full health. NHS only tests TSH and FT4. That's very often not enough

First thing is, do you have any actual blood test results? if not will need to get hold of copies

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max)

How much Levothyroxine are you taking

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

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 primary hypothyroidism in Uk is due to Hashimoto's

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4 plus vitamins

Private tests are available, NHS often refuses to test FT3 or thyroid 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 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. (Patient to patient tip, GP will be unaware)

[Thebookworm]

Wow that's alot to take in!! I have been tested for ferritin, Vitamin D and folate etc not for antibodies have an appointment to go to next week. I'm on 75mg levithyroxine and folic acid amongst others meds for other problems.

[SlowDragon Administrator]

Link about thyroid blood tests

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

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

thyroiduk.org/tuk/about_the...

See Box 1. Towards end of article

Some possible causes of persistent symptoms in euthyroid patients on L-T4

You will see low vitamin D, folate, ferritin and B12 listed

onlinelibrary.wiley.com/doi...

Hashimoto's can affect the gut and lead to low stomach acid and then low vitamin levels

Low vitamin levels can affect Thyroid hormone working

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 gut connection is is very poorly understood

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

Ideally ask GP for coeliac blood test first

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...

thyroidpharmacist.com/artic...

[BeansMummy]

I manage my Hashimoto’s pretty well myself (prescribed levothyroxine, self-medicating with T3, huge diet/lifestyle changes and various supplements), but I do have to keep on top of it all. However, it’s the very nature of the disease that things fluctuate so, yes, I do still get symptoms which sometimes last some time.

I would also say that being told test results are “normal” often mean anything but. Please get a copy of your results, and maybe write a new post about them. However, it may well be nutrient-deficiencies causing symptoms too, so it would be good if those can be tested – if your GP won’t do them and, if you can afford it, it’s easy to get them tested privately.