Good response from Endo

[floss76]

I saw an Endo for the first time last week. He is looking into my high PTH. During the appointment he discussed my Thyroid and agrees that I am on the appropriate level of Levothyroxine. He discussed my antibodies and told me that they will eventually destroy my thyroid, so I must have 6 monthly blood tests to ensure I am on the right dose. Just thought I would share this as I thought it was a really positive appointment.

[shaws Administrator]

It's good to hear of someone's good consultation and who is happy with it.

Are you aware that going gluten-free can help reduce the antibodies that attack the thyroid gland until you are hypothyroid. Having antibodies means that you have an Autoimmune Thyroid Disease - commonly called Hashimoto's or hashis. It is the commonest cause of hypothyroidism and treatment is the same, i.e. levothyroxine.

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

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

[floss76 in reply to shaws]

Hi Shaws, no I haven't gone gluten free yet. 😳 I really must sort my life out with that. Yes I am aware (thanks to this group) that I have hashis. My GP doesn't understand anything about this. It was due to a high PTH that i got referred to an Endo and during that appt he told me the antibodies will destroy my thyroid, and will need 6 monthly blood tests. My GP thinks it's okay to wait 12 months. Think I'm going to put her right.

[SlowDragon Administrator]

What were your most recent blood test results for TSH, FT3 and FT4?

Previous results were too low 4 months ago and you had just had dose increase to 75mcg Levothyroxine

[floss76 in reply to SlowDragon]

Hi SlowDragon, only TSH was tested which was 0.89 (0.27-4.2).

[SlowDragon Administrator in reply to floss76]

Just testing TSH is completely inadequate

You need full Thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

What supplements are you taking?

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. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels 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. Dairy is second most common.

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

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

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

What action is happening over high Parathyroid results?

Very good website about parathyroid issues

parathyroid.com/about-parat...

And app to evaluate your own test results made by same people

calciumpro.com/high-calcium...

[floss76 in reply to SlowDragon]

Thank you SlowDragon, yes I think I will need to go down the private route for those extra tests. The Endo request PTH, Calcium, Vit D and Magnesium, still awaiting results. It seems that if the TSH is in range then T4 is not tested. T3 is never done. I recently tested negative for Coeliac. That was requested due to previous low Ferritin and folate.

My Endo has told me if results have normalised then I will be discharged, if not then he is going to go down the route of it being Primary Hyperparathyroidism. I will then need scans etc..and possibly surgery. This is unusual I think because my Calcium levels are always normal (the lower end of range).

[SlowDragon Administrator in reply to floss76]

Majority of us with Hashimoto's are not coeliac, but vast numbers find strictly gluten free diet helps or is essential

Once you have vitamin D, calcium and parathyroid results add them to calcium pro app, it will evaluate results

[floss76 in reply to SlowDragon]

Thank you SlowDragon. I know I don't have much input into this group but I come on here daily to read the posts. I just wanted to say that I think it is amazing and has possibly saved my sanity! 🤪

[floss76 in reply to SlowDragon]

And to add, I did do a Medicheck Full Thyroid test quite some time ago. My T3 was 4.38 (3.10-6.80).

[SlowDragon Administrator in reply to floss76]

FT3 is far too low

To improve conversion vitamins need to be optimal

Majority need to supplement vitamins almost continuously to maintain levels

Vitamin D obviously far too low. Low vitamin D nearly always results in low calcium

Low vitamins are extremely common and show gut is affected. In part because under medicated

But gluten intolerance is likely as well

Essential to test folate, B12 and ferritin too

[Breena]

Where are you ?

[floss76 in reply to Breena]

Hi Breena, UK Berkshire.