Desperate for advice

[Paolatello]

Hi all

I need some help with next steps.

I have u always believed I had hashimoto’s as my Levels fluctuate but never stay under active long enough to get treatment and my TPO antibodies are high ranging from 70 ish up to 1100.

Had a baby 9 months ago and symptoms flared up. Had radioactive uptake scan last month which showed an active hot nodule and TRAb test that was positive.

Consultant now says he would like to try me on a small dose of carbimazole. My results are:

TSH 0.21 (0.3-3.0)

Free T4 21 (10-22)

Free T3 5.5 (3.5-6.5)

Is the consultant on the right track?

[NIKEGIRL]

Hi. I would ask you politely. How do u feel within yourself? For the TPO and TRAB test do u have any ranges? What symptoms do u get? Did the consultant offer TSI or Tg testing?

[Paolatello in reply to NIKEGIRL]

Feel bad most days. Sometimes sore joints, sometimes shaky and palpitations and hypoglycaemia. Numb hands during sleep. Losing weight. Anxious. Mood swings No other tests ordered.

[NIKEGIRL in reply to Paolatello]

I am not very knowledgeable. I hope others will come along more knowledgeable than me to help u more than I can. I have Graves and I have positive TSI, Trab and TPO. All 3 three are largely elevated. My T4 and T3 are double the ranges. T4 10-26 mine is 44 and T3 2.0-6.0 mine is 28. I do have highly elevated levels more so than others. Another aspect to consider is have u had any vitamins tested? Specifically iron, folate, b12 and vitamin d. These 4 are often low in thyroid patients? Have u had any testing on these or do u supplement with any of these? Selenium is also recommended for thyroid patients

[NIKEGIRL]

I hope SlowDragon or Helvella or Shaws will join this conversation with more factual advice than I can offer u.

[PurpleNails Administrator]

Your Free T4 & T3 are still within range. I wouldn’t agree to carbimazole (yet)

You do need to be monitored.

I have a hot nodule it took over 4 years for the FT3 to get from top of range to almost double the range. This it when it was spotted & I was started on carbimazole.

[Paolatello in reply to PurpleNails]

Thank you. How did carbimazole help/change things for you? What symptoms were you having?

[PurpleNails Administrator in reply to Paolatello]

I edited my post as I meant to put I would NOT agree to start carbimazole until my frees were continuously over range or high above range. Yours are still in range. I don’t have autoimmune but you do have TRab. So your levels could rise more quickly, which is why careful monitoring is very important. What sort of dose was the doctor suggesting?

My symptoms had developed very gradually and I honestly still hadn’t noticed at the time it was picked up. I had tachycardia, headaches, nails lifting off bed, zero energy & motivation, off scale appetite. So much so I was extremely overweight and thought I had hypothyroidism.

I Started Carbimazole 10mg x2 and propranolol 40mg x3. Two years on I now take 10mg / 5mg alternate days, and 30mg propranolol. They keep my levels down. The doctor want it very low so my TSH get into range, but it hasn’t risen yet.

I did stop propranolol briefly but gave me migraines if I don’t take a low dose. I don’t have those symptoms any more & I did lose weight with diet. I have other health issues and other symptoms that have no apparent cause.

[SlowDragon Administrator]

You also need vitamin D, folate, ferritin and B12 levels tested

Maintaining GOOD vitamin levels can significantly improve symptoms

Plus get coeliac blood test done BEFORE considering trial on strictly gluten free diet