Goiter and hyperthyroid to hypothyroid

[Someome]

I have been diagnosed with Graves at the beginning of June. Blood tests as follows:

ferritin: 46 (normal: 13 - 150), TSH: 0.005 (normal: 0.27 - 4.2), FT4: 65 (normal: 12 - 22); TRab: 12 (normal: <1.75), vit D: 9 (deficiency: < 20 ng/mL)

Took methimazole 30 mg per day for 2 weeks, then 20 mg per day until 23.07. Had blood tests:

ferritin: 16 (normal: 13 - 150) - even though I have eaten more meat. I barely ate any before

FT3: 3.1 (normal: 3.1 - 6.8), TRab: 11 (normal: <1.75), FT4: 5.7 (12 - 22), TSH: 0.202 (normal: 0.27 - 4.2)

After having my dose halved, taking only 10 mg methimazole per day for three weeks, I have developed a goiter which is growing...so I had blood tests today and my FT4 was just 5, my FT3 was 3.9 but my TSH skyrocketed to 13.4 (normal: 0.27 - 4.2).

Will the goiter grow even more? I feel discomfort when I gulp already. It is visible.

The doctor advised no methimazole anymore but how can i go from severely hyperthyroid to hypothyroid so fast?

Also my main problem is that my heart is beating fast. Even when hypothyroid.

Thanks for any insight.

[SlowDragon Administrator]

Your ferritin is far too low

Has GP done full panel test for anaemia?

Vitamin D extremely low, presumably you are on vitamin D supplements?

Essential to test B12 and folate too

Have you had TPO and TG thyroid antibodies tested?

Had an ultrasound scan of thyroid?

It is possible to have Hashimoto’s (autoimmune hypothyroid) at same time as Graves’ disease.

You may need “block and replace “ where they prescribe anti thyroid medication for Graves disease and levothyroxine as replacement thyroid hormone

[Someome in reply to SlowDragon]

I actually asked my endocrinologist if I have anemia cause all the red blood cell tests were a bit off.. But she said no. So no further tests. My vit D has normalized after supplements. B12 is OK.

I tested for tpo in June and they were detected but they were under the threshold for positive.

Haven't had TG tests. Maybe I should.

[SlowDragon Administrator in reply to Someome]

Patients have learnt that we need optimal vitamin levels

NHS will only test and supplement for deficiencies

So will prescribe if vitamin D is under 50nmol

But optimal vitamin D is at least around 80nmol and around 100nmol maybe better.....but will need to self supplement to maintain these levels

Serum B12 over 500

Folate over half way through range

Ferritin at least over 70

Thousands of posts on here about all these and how to improve if too low

[Lora7again]

I also have a goiter it is a multi-nodular one. When I was very hyper it looked very swollen but now you can hardly see it unless I tip my head backwards. You can read my story on my profile page if you are interested. The one thing I will say is don't be persuaded to have your thyroid removed because a lot of people who have done this have struggled to get the correct treatment afterwards. One of the first thing my Endocrinologist said to me was that I could have my thyroid removed or have RAI. I am so glad I ignored his advice because here I am 12 years later still with my thyroid and at the moment I feel well. I do however have regular ultrasounds of my goiter just to check that none of the nodules look suspicious.

[Someome in reply to Lora7again]

Surgery doesn't sound very appealing to me at all and hopefully won't have to choose between RAI and that. I'm glad you've managed to keep the thyroid problems under control. Seems like a constant struggle with getting medicated correctly.

[asiatic]

The anti thyroid meds have worked very quickly blocking your production of thyroid hormone but you have now become hypothyroid. This happened with me and worsened my TED. Your TRAb levels which are a mix of blocking and stimulating antibodies are still quite high and at the moment you are unlikely to achieve remission. Block and replace would therefore be a good treatment for you. It may take a bit of monitoring to achieve the right balance. I took 10 mg. Carbimazole and 50mcg. Levothyroxine. This gave my thyroid a bit of a rest and a pea sized nodule which had been clearly visible disappeared. I have recently reduced the Carbimazole to 5mg. and my TSH is coming to within range, hopefully a sign I am reaching remission after 5 years. If not I am happy to stay on long term, low dose block and replace as I now feel well.

[Someome in reply to asiatic]

It's actually great to hear a success story.

I haven't had bulging eyes and hopefully it stays this way...

I didn't test antibodies now but I think they couldn't have fell so quickly so you're probably right.

But what is the use of block and replace? I mean if it's not sure that antibodies fall during treatment with methimazole(so I understood) , what is the use of continuing methimazole while taking thyroid hormone?

Why not titrate the methimazole and get the natural hormone the thyroid makes?

[asiatic]

I don't have answers and not sure even the "experts" do. Carbimazole is said to have an immunomodulary effect. Also it is variable which antibodies ( blocking, neutral or stimulating ) dominate during the course of your disease. I experimented with different regimen to find which gave best results with blood tests and symptoms. For me titrating down didn't work. I became very hypo and TRAb were at 16. Levo alone was not a good option as it would have needed frequent adjusting . B and R keeps me stable longer. It's all about finding what best suits your individual circumstances. If you are being well monitored and learn to spot your body's first signs of hypo or hyper you can safely experiment a little.

[Batty1]

My doctor just informed me your consider having anemia if your ferritin is below 30 .