To take meds or not to take meds....

[Sillvie]

Hi guys,

At the end of Nov last year I had some routine blood tests done as I was constantly itching. The results were Serum TSH level 0.01 mu/L (0.35 - 5.5) and Serum free T4 level

35.5 pmol/L (10.0 - 19.8) In Feb that same year my results had been Serum TSH level

1.48 mu/L (0.35 - 5.5) with T4 of 17 and all previous years had been ok so I was surprised at the reading. My GP did a further test which was Thyroid peroxidase antibod lev33 iu/mL (0 - 61) which was normal. My resting heart rate was 88, but I could really feel my heart pounding heavily in my chest. I had a slight tremor in my fingers. I was having loose bowel movements every day, I had really bad insomnia and couldn't get to sleep at night and had lost 10lbs in weight but hadn't put all they symptoms together. My GP wanted to mediate me but I didn't want medication and said I'd wait for my endrocologist referral. By the time I saw her in Mar this year all my symptoms had gone. I had some bloods done a couple weeks before I saw her which were Serum TSH level 0.01 mu/L (0.35 - 5.5 )Serum free T4 level 26.5 pmol/L (10.0 - 19.8) which were high but she said that as it had come down and symptoms weren't a problem, no need to medicate, come back in 5 months. I did some more bloods at end of last month which were Serum TSH level 0.01 mu/L (0.27 - 4.20) Serum free T4 level 31.6 pmol/L (12.0 - 22.0). When I went back to see her on Wednesday this week she said because it had risen again I would need medication. I explained that I hadn't had any symptoms since Jan. My resting heart rate is between 60 and 65, the weight all came back, normal bowel movements, no itching and no insomnia, no tremor. But she has told me that I still have to take medication because I could have issues with my heart and my bones could thin in the long term.

I guess my question is do I really need to be medicated if I have no symptoms? I was told medication would be for a year and then they'd look to gradually wean me off if I was improving. But if the medication didn't work I'd need to think about having my thyroid removed. I know she has to prepare me for the worse but since Jan I have felt completely fine physically. I'm really bad at taking things, even vitamins, and have been warned of the dangers of missing this medication once I start. Even if I set alarms with the best will in the world I don't see myself taking something everyday.

Is there anyone else on here with no physical systems of hyperthyroidism who is on medication due to blood results? I have to be immobilised with pain before I even take pain killers so the thought of having to be on medication is really, really scary me. I would rather just wait and see if the symptoms come back before making this kind of decision. Am I being silly not wanting medication? I know my levels of high but is 31 dangerously high?

Please offer me whatever advise you can. Thank you in advance.

[SeasideSusie Remembering]

Sillvie

If it was me, before taking any medication, I would want to know that they are medicating the correct condition.

Ask for thyroid antibodies to be tested.

For overactive thyroid (Graves Disease) it's TSI (Thyroid-stimulating immunoglobulin) and TRab (Thyroid stimulating hormone receptor antibody).

For autoimmune thyroiditis aka Hashimoto's, which is where antibodies fluctuate and the antibody attacks gradually destroy the thyroid, you can have results fluctuate and symptoms for both hypothyroidism and hyperthyroidism, it's Thyroid Peroxidase (TPO) and Thyroglobulin (TG) antibodies.

Doctors often confuse the hyper-phase of Hashimoto's for overactive thyroid disease and treat with Carbimazole, which is wrong.

You need to know exactly what condition you may have before taking anything for overactive thyroid.

[Sillvie in reply to SeasideSusie]

Thank you SeasideSusie. Do you know what my Thyroid peroxidase antibod test measured as the results came back normal. Is there a specific antibody test I need to ask for?

[SeasideSusie Remembering in reply to Sillvie]

Sillvie

You have given the result of your Thyroid Peroxidase antibody test in your opening post.

My GP did a further test which was Thyroid peroxidase antibod lev33 iu/mL (0 - 61) which was normal

The result at that time showed they were within the range of 0-61. However, antibodies fluctuate, sometimes they will show in range, and if you have autoimmune thyroiditis (Hasimoto's) sometimes they will be over range which confirms it. You only need one result over range to confirm Hashi's, then the test doesn't need to be repeated.

With Hashi's, as I said, the antibodies destroy the thyroid and you become hypothyroid (underactive) where TSH is high and FT4 and FT3 are low. But because the antibodies fluctuate, there are times when the hormone levels are high because the antibody attacks cause the cells to die off and they dump a load of hormone into the blood. This will then result in a low TSH and high FT4 and FT3.

From the results you've given in your opening post, your TSH has fluctuated from a very low, below range 0.01 with a very over range FT4 of 35.5, to an in-range TSH of 1.48 with an in range FT4 of 17.

Heart pounding, raised resting pulse, tremor, losing weight and loose bowels can be a sign of overactive but as everything settled down and went back to normal that would indicate that you most likely had a Hashi's hyper swing with those symptoms and the low TSH/high FT4.

Ask your GP to explain why, if you have an overactive thyroid, with below range TSH and high over range FT4, and symptoms of overactive, then why do your results fall back into range and all those symptoms disappear.

For your doctor to assume you have an overactive thyroid (Graves disease) and give you medication for it (Carbimazole) is very wrong when she hasn't tested for absolute confirmation. This is why you need the antibodies tests done. My guess is that you wont have positive Graves antibodies but will at some point have positive Hashimoto's antibodies.

So ask for all the antibodies to be tested

TSI and TRab for Graves (overactive)

TPO and TG for Hashimoto's

[Sillvie in reply to SeasideSusie]

Thank you so much for this. You have explained more to me in your short post than my GP and endocrinologist have put together. I've also been doing some online reading but it sometimes is a bit over my head so thank you vey much.

[SeasideSusie Remembering in reply to Sillvie]

Sillvie

I do gabble on at times and sometimes wonder whether my ramblings make sense. I'm glad you've managed to follow what I was saying