Newbie...unsure what to do next

[SLP01]

Hi there

I've had post partum thyroiditus three times after each pregnancy. I was treated with carbimazole and beta blockers. My thyroid has since returned to 'normal' however I feel anything but normal! I've spent three years going back and forth to GPs and consultants, both private and NHS to help establish why I still feel so exhausted. Symptoms include hair loss, exhaustion, memory loss, brain fog, muscle aches, migraines, mood swings and dizziness. My latest results are:-

TSH- 1.37 (0.27-4.20)

FT4 13.62 (12-22)

FT3 4.0 (3.1-6.8)

Serum cortisol 377

B12 569 (180-900)

Ferritin 66 (15-445)

Folate 6.5 (2.50-19.50)

Vit D not tested but I take a supplement for this.

I'm not sure where to go from here and feel very fed up. I've taken a low dose of Levo in the past (25mcg) but didn't feel hugely better and it resulted in T4 increasing, T3 staying the same and TSH decreasing to around 0.6.

I'm not sure where to go from here? Any advice appreciated!

Thanks

Sam

[SlowDragon Administrator]

Both your FT4 and FT3 are very low

You need TPO and TG antibodies tested, but NHS unlikely to do this

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 results are high then you have Hashimoto's

A 25mcg dose of Levothyroxine is too low and often makes people feel worse.

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

[SLP01 in reply to SlowDragon]

Thank you for your reply. I have been tested for antibodies in the past but dont have the paperwork so am not clear on what was tested. I will request this info. I do know I tested positive for TSH receptor antibody at 0.9 which indicated Graves. I'm not sure whether this would affect my thyroid health now though?

[SlowDragon Administrator in reply to SLP01]

Many people with Graves seem to also benefit from strictly gluten free diet (like Hashimoto's patients)

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

chriskresser.com/the-gluten...

Would probably be good idea to see what antibodies levels currently are

[SLP01 in reply to SlowDragon]

Thanks, I'll get my antibodies re-tested to see what's what and have a good read of these links.

[SlowDragon Administrator in reply to SLP01]

Saw you new post this morning

Have you had TPO and TG thyroid antibodies tested yet?

Or tried strictly gluten free diet?

Some of us can't tolerate T3 until addressed food intolerances and got vitamins optimal

[SLP01 in reply to SlowDragon]

Hi there thanks for replying. Yes I’ve had both tested. TPO was 13.4 and TG Ab 21. So both look fine. I’ve been gluten free for nearly a year and don’t feel it’s had any benefit. I’m at a loss what to do next. I’m trying to find an open minded endocrinologist but that seems impossible!

[SlowDragon Administrator in reply to SLP01]

Had you retested vitamin D, folate, ferritin and B12

These really need retesting regularly

Folate was low in this post

Unless over 50 years old, standard starter dose is 50mcgs.

25mcg dose is so small it often makes people worse

cks.nice.org.uk/hypothyroid...

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

* This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

Other option is to block and replace. Blocking your own thyroid output and replace with Levothyroxine.