Concern about Levothyroxine

[Justine_Case]

Hi I have Hashimotos, but no treatment yet as my TSH is still not high enough.

Been feeling rubbish for ages, and was hoping Levothyroxine would help once I am able to go on it.

Problem is, for some while now if I have foods or meds that contain iodine, my BP and pulse go very high causing palpitations, and I have ended up at A&E a couple of times with similar to panic attack symptoms (before I knew to avoid iodine).

Anyway my question is, I understand Levothyroxine contains iodine - to replace the missing iodine in the thyroid, but am obviously worried that once my TSH is high enough for my GP to prescribe it, I wont tolerate it.

I have had to reduce anything that contains iodine in my diet, due to this response. I have told my GP about this, but he didn't offer any suggestions.

My TSH is slowly creeping up as expected, so it shouldn't be long until I am offered Thyroxine, but I'm not sure if I will be able to take it.

Other than my 'iodine episodes' my symptoms are underactive, and my blood tests reflect this.

Could do with some advice if anyone knows how I should proceed?

[helvella Administrator Thyroid UK]

Unlike many other things which contain iodine, in levothyroxine it is chemically bonded and not free to affect you.

However, it isn't quite plain sailing. The T4 gets converted to T3 by removal of an iodine atom which would normally cycle back to the thyroid to be used to make more thyroid hormone. (And similarly for T3 to T2, etc.)

Some of the iodine will be excreted.

I think you need specialist advice. But maybe some other members have experience and will be able to discuss what happened for them?

[Jaydee1507 Administrator]

I see your ferritin level was 31 only 2 months ago. Low ferritin levels (and other key vitamins) can make us have intolerances. So the best thing you can do is work on any low levels that you have at the moment and then there shouldn't be an issue when it comes to taking Levo.

Low ferritin causes a plethora of symptoms including hair falling out in itself. Raising that alone will make you feel much better for now.

guiltfreehealth.com/the-lin...

If people do have issues it's usually the fillers that are used in the pills such as lactose, mannitol and maize. You would then switch to a different brand or liquid Levo.

[SlowDragon Administrator]

previous posts discussing that you have Hashimoto’s and know you are gluten intolerant

Have you had vitamin D retested yet ?

Low vitamin levels tend to lower TSH

Essential to get all four vitamins tested and optimal

Ferritin was very poor

You need to retest see if improved

[Justine_Case]

Hi Thank you for your replies.

Yes my ferritin was low when last tested, I did mention this to my GP to see if he recommended that I take iron supplements, but he said my iron levels were normal.

Anyway, having researched on this forum, plus speaking to colleagues at the Pharmacy I work, I have been taking ferrous fumurate - but only one a day, instead of the three daily usually recommended to patients with an iron deficiency.

My symptoms are numerous still, in particular I am tingling all over (scalp to feet).

The GP blood test ruled out pernicious anemia.

My B12 levels have been reasonably high, for the last couple of blood tests, due probably to me taking B12 supplements, as I suspected a deficiency may have been the cause of my symptoms.

My last GP blood test 'Serum vitamin B12 level 583 ng/L [180.0 - 915.0]' ( dropped from around 900) as I had stopped taking the supplements around three weeks before this test.

I am going to book another test with Thriva, to check my B12, Iron Panel, Vitamin D and another Thyroid test, to see where my TSH is at now.

I also this morning had a GP blood test for H-Pylori, as the GP suspects I have gastritis.

They haven't as yet referred me to have an endoscopy - in spite of the Doctor suspecting gastritis months ago - sigh.

Anyway, once I have my new blood test results, I will post them here for your advice.

I am hoping if I manage to get the vitamins at a good level, the iodine sensitivity wont be as bad!

Many thanks

[SlowDragon Administrator in reply to Justine_Case]

Make sure you test early Monday or Tuesday morning

Watch out for postal strikes

Important to test B12 and folate together

Are you only taking B12 or also take daily vitamin B complex as well

Remember to stop taking vitamin B complex 5-7 days before test as contains biotin

Ferritin at least over 70 and nearer 100 likely an improvement

[RedApple Administrator]

Justine_Case, 'and another Thyroid test, to see where my TSH is at now.'

Although TSH is typically the only test result your GP might be interested in, it is only part of the picture.

As you are purchasing a self test, do ensure that the thyroid part includes FT4 and FT3 as well as TSH. This will give a fuller picture of your thyroid status.

[Justine_Case in reply to RedApple]

Good point, I will do that thank you!