Newbie with Test Results - please could I have your views?

[HarlesBarles]

Hi! I've just got my first private labs back. GP surgery is impossible to engage with; I can only get a five minute appointment over the phone with different GPs each time. I had an NHS ultrasound on Tuesday and was told at the time of the scan that my thyroid was inflamed, no nodules.

The ultrasound referral came from a rheumatologist that discovered in January that I had a TSH of 7.37 and T4 of 13.

Based on those results, my GP consulted with his go to Endocrinologist and has offered for me to take 25mcg of LT4 which I have not started yet as I have been researching options and wanted to have a full baseline first.

Also, when I took the test in January, I was taking a hair supplement with biotin and I stopped it for 72 hours prior to the test below (now it's a TSH of 15.9, up from 7.37, The T4 is basically the same: 13 before and 12.7 now).

I've been struggling for many years, and I now realise I've had clinically clear Hashi symptoms for at least the last four years. The NHS has repeatedly misdiagnosed me, put me on repeated immunosuppresants that made me extremely ill, called it fibro, called it perimenopause, called it time wasting...

I'm really struggling, can't think straight, can't remember anything, constant aching and muscle weakness, digestive probs, hairloss, swollen face, oedema, weight gain and gradual creeping up of blood pressure when it used to always be on the low side, and then there's the infertility which even if I fixed it, it's too late because the immunosuppressants were toxic and stay in my system...

I have been strictly gluten dairy and oat free for over ten years. Prior to that I was extremely ill, extremely thin, covered head to toe in hives and psoriasis and had suffered a decade of diarrhoea. When I went gluten and oat free the diarrhoa stopped.

I take loads of supplements including high doses of magnesium (I can finally sleep), methyl-folate (my folate levels were very low before and my hair is finally growing back), 1000mg C, calcium, D, Optibac Probiotic and a Vitabiotics Hair and Skin supplement.

What would you do now?

Who would you recommend I go to see for the correct treatment?

What should I ask for?

Thank you in advance x

[beh1]

Simplistic answer: get going on the levothyroxine. It’s a very low dose, but better than nothing. Get doc to retest bloods in 6 weeks, because you’ll undoubtedly need an increase. Read the instructions about how to take. Empty stomach, no food or drink apart from water for an hour. No supplements for 4 hours. If poss take away from other meds...

Other people on here will give you more thorough info.

[HarlesBarles in reply to beh1]

Thanks for this! I didn’t reply earlier as I was feeling so unwell. In desperation, I started the thyroxine on Sunday. Thank you for the guidelines on how to take it as my GP didn’t give any instructions at all!!!

I definitely felt worse after taking it, didn’t sleep Sunday night at all and became very emotional, but by Tuesday the brain fog lifted a bit and I had more energy and the burst of emotion seems to have dissipated. Still slow and achy but hopefully that will improve in time...

[fibrolinda]

How much vitamin d? Stop calcium unless tests have shown low... D increases absorption of calcium from food. You should take k2mk7 with the d.

Your GP is correct in prescribing levo although that is a very low dose usually for elderly or infirm. You should get tested and dose increased every 6-8 weeks until you're on correct dose for you.

[HarlesBarles in reply to fibrolinda]

I’ve been in a daze for days, sorry for not replying sooner! I didn’t know about k2mk7, thank you, I’ll investigate! Re Vitamin D, I’ve been intermittently spraying BetterYou DLux with other supplements, approx 9000iu of D per day...

I don’t know my calcium levels but I’ve been mostly dairy free for most of my life, and 100% dairy free for the last decade. I had a bone density scan about five years ago at 45, when it looked like I was in early menopause (I now realise this was caused by hypothyroid), and my pelvis was shown to be slightly osteopenic. Since then, I found a calcium supplement that didn’t cause constipation and have been taking it fairly regularly... will get my calcium levels checked... thank you!

[penny]

I have read on here that starting on 25mcg of T4 will make you feel worse as it is not a high enough starting dose, unless one is elderly or have a heart condition. The recommended dose is 50mcg to start. I’m not a medic, just what I’ve read here.

[HarlesBarles in reply to penny]

Thanks for your helpful comment. I just realised that some of my reply to Beh1 above was meant to be in response to your comment. My brain is clearly not working properly yet lol! It was good to know things could get worse as I would have really worried given the dramatic initial reaction I had. I’m feeling a bit better now and am hopeful things will improve over time. Thank you again.