What have I got??

[Paolatello]

Hi. Thanks for reading. History is:

Have had my thyroid flagged loads of times on bloods over the last 20 years. Four significant hyper findings which have been non-detectable TSH and over range Free T4, twice when in early 20s and also in the year after each of my children being born. Every time the GP has pushed for Carbimazole but my levels have gone back to normal without.

Here’s the kicker - I’ve always had elevated TPO (varies but has been as high as 1500) and my recent TRAB level was “positive” at 3.1

Basically my Consultant said that reading is indicative of Graves and wanted me to start a small dose of carbimazole but when my levels evened out I chose not to.

My most recent bloods are:

TSH 0.69 (range 0. 35-3.5)

Free T4 14 (range 10-20

Free T3 4.8 (range 3.5-6.5)

I received a letter from my Consultant saying how all my levels are in range and he will see me at Christmas. Sounds great right? But….

I FEEL HORRIBLE!

My neck is burning in the thyroid area and hurts on and off, I’m exhausted, my joints hurt, I’m anxious and emotional, I have horrible digestion issues and the list goes on.

When I had the reading of hyper with TRAB positive I was feeling better than this! Should I have had the carbimazole?! Do I have Hashis and Graves? Do I even have Graves like my Consultant seems to think?

On and off I’ve suffered with red bloodshot eyes, waking with eye pain that goes away once I’m fully awake and grittiness. I’ve also had times where I’ve suffered panic attack type attacks although they don’t seem to stem from panic, more like a rush of adrenaline randomly (terrifying) and also very frequent hypoglycaemia.

What’s my next step here?

[SlowDragon Administrator]

Essential to test vitamin D, folate, ferritin and B12 at least annually

Looking at old posts you had truly terrible ferritin level of 12

What vitamin supplements are you currently taking

When were vitamin levels last tested

Have you had coeliac blood test done

Are you on strictly gluten free diet

[Paolatello in reply to SlowDragon]

Vitamins haven’t been done for over a year and coeliac test was negative, although a long time ago! I’ve been taking an iodine free multivitamin recently plus vitamin D, omega 3 and a B complex. The issue I have is that taking vitamins seems to cause worsening of my thyroid symptoms so I end up not continuing consistently. I seem to be fine taking Vitamin D and omega 3 but all multivitamins or vitamin C supplements seem to make me worse

[Paolatello in reply to SlowDragon]

Also, I don’t think this can just be vitamin deficiency because I have really good periods where I’ve felt great. Surely that wouldn’t be the case if my vitamin levels were consistently bad?

[SlowDragon Administrator in reply to Paolatello]

Well you could have Hashimoto’s and Graves’ disease

I’ve always had elevated TPO (varies but has been as high as 1500) and my recent TRAB level was “positive” at 3.1

Very high TPO suggests you have Hashimoto’s

Endocrinologist could offer “block and replace “

Block with Carbimazole and replace with levothyroxine

First step is to get your vitamins tested see where levels are

Also trialing strictly gluten free diet always worth doing

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

[e-mail]

[Buddy195 Administrator]

For your gritty eyes I recommend HycoSan or Hyloforte preservative free eye drops. If your eyes continue to be painful, do see an optician & mention your thyroid issues. I have TED and was recommended by my Endo and ophthalmologist to take 200mcg selenium for 6 months when my eye condition started & reduce to 100mcg after. Are your eyes sensitive to light? Do you have any eyelid swelling?

I was originally diagnosed with graves by my Endo as I had weight loss, palpitations, fast pulse & high anxiety, but antibody tests (at a later date) showed Hashimotos. The adrenaline rush can be hard to deal with. Have you been offered a beta blocker at all?

[Paolatello]

Thank you. This is really helpful. I don’t get swollen eyes but I do feel like I always need sunglasses! I’m going for an eye test soon so will mention it.

Have you had the adrenaline rushes? I haven’t found many people who know what I’m talking about. It’s like my body is having a panic attack but my mind isn’t. It’s so weird!

So do you have TED with Hashimoto’s or is it also Graves?

[Buddy195 Administrator in reply to Paolatello]

TED is more common with Graves, but some (like me) have it with Hashimotos and a few have it who are euthyroid (no thyroid condition). I wear reactive lenses/ sunglasses all the time & need to wear night driving lenses as I find bright lights painful. If you are concerned about your eyes regarding TED I’d recommend you start a selenium supplement or eat a couple of Brazil nuts daily (if grown in selenium rich soil) as it has proved beneficial in mild/ moderate TED.

My endo prescribed me proprananol to help with palpitations and this did help. I remember feeling really ‘wired’ and pacing up & down. Luckily this calmed over time and I now only experience these symptoms if my medication needs adjusting.

[Litatamon in reply to Paolatello]

The light sensitivity is also a sign of b12 deficiency/Pernicious Anemia.

[Paolatello]

Thank you.

[Miffie]

Lots of good advice from others about thyroid related points .I notice you suffer from very frequent hypoglycaemia.

Are you diabetic ? You may need to discuss your medication with your diabetes nurse or GP. This should not be happening and is as diabetic patients know potentially dangerous.

How often are you recording and treating hypos. A quick call to the GP for an urgent appointment would not be unreasonable as you can hand over your meter or show smartphone results for them to investigate urgently.

If not diabetic you still need to show the GP the results of your testing and discuss how you treat these episodes.

Good luck and take care.

[Paolatello]

I am not diabetic and my blood sugar levels have been checked in various situations and circumstances. My consultant says my thyroid is causing blood sugar sensitivity and, although I feel hypoglycaemic, im not actually according to blood results. It’s a symptom of thyroid issues apparently. I never faint, just feel shaky like I’ve had too much coffee