Thyroid levels up and down for over a year, NDT?

[williamsad19]

Hi all, just wondered if anybody could offer me some guidance? I was diagnosed with hashimotos last October (2017), although my TSH have always been slightly raised for years! Anyway...... since then my levels have fluctuated every time I have a test (6-8 weeks) they have gone from 7 to 0.01 back to 12 then to 0.03 with low T4 and high T4’s to match the high/low TSH. T3 apparently been normal.

I’m gluten free, minimal dairy and take levothyroxine, current dose is 100mcg after TSH in September was 6, now today my TSH is 0.12 🤪 BUT I feel the same, no change!! Still exhausted, still catch every virus that goes round.

All vitamins are okay, apart from ferretin, still not optimal although on ferrous fumerate. I take my meds the same time every day before food vits etc etc

The reason I ask is because I’m due to see endocrine on Thursday and was looking to see if anyone else has had this?? I know they won’t be of any help! So would be good to know what I need to ask for etc?

Also would anyone suggest NDT and how to get it?

Many thanks

[greygoose]

You need to ask for copies of your blood test results, with ranges, so that you can post them on here - although tell him that! Sounds as if he's dosing by the TSH, which is a recipe for disaster. There's no such thing as 'normal', so don't accept that in place of the numbers. You need the numbers.

[williamsad19 in reply to greygoose]

I’d be here for years 🙈 I’ve had a blood test every 6-8 weeks since last August. I will ask them nicely

[greygoose in reply to williamsad19]

Well, you don't have to post all of them. It's always good to know the results from when you were diagnosed, and the latest - and maybe a couple in between that demonstrate why a dose was changed.

[williamsad19 in reply to greygoose]

Thankyou

[Jbold1]

If your TSH is always high, it's cuz you're on the Synthroid. Also, are you allergic to gluten or dairy? I'm trying to figure out why you would eliminate them from your diet. Actually, I believe most, if not all, people are lactose intolerant. You can actually take a type of DNA test that's available at the drug store to see whether you're allergic to lactose and gluten too, i think.

Also, you need to look at your entire thyroid panel. Some docs run different ones. I had a new PCP, and he kept running the TSH too. I was like, "Idc what that is! It's always been low!" See, I was rushed to the ER one day with chest pain, tachycardia, and severe hypertension. After a three day hospital stay, I was diagnosed with atrial fibrillation and hyperthyroidism (meaning overactive thyroid function)...but my TSH was low. I went home and realized I had a large lump on my throat. Why the hospital didn't even touch my neck...Idk. Bunch of fools. So, i went to an Endo who sent me for more blood, an ultrasound, and ultimately, a radioactive iodine uptake test. The tests showed i had Grave's disease, which is why i developed the afib on top of severe anxiety, excessive sweating & drinking & urinating, muscle wasting, tremors, weight loss, etc. I lost 50 lbs, but it was all muscle. My pelvic floor was the first to go, lol.

Anyway, i think my point is that you need to physically see your results. That's why i LOVE that i have an app that shows me all of my test results, labs, vitals, appts, conditions, etc. I can even send a msg to my doc & record journals in it.