Kelp and Hashimoto: Hi there, I only found this... - Thyroid UK

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Kelp and Hashimoto

spaneast profile image
12 Replies

Hi there, I only found this forum the other day and the comments are so helpful!! I was diagnosed with hashimoto 8 years ago and have been taking 900mg kelp daily for 7 years alongside 150mg levothyroxine. The last 8 months has been virus after virus and i'm constantly exhausted. I have a 5 year old and ran a half marathon last year so normally pretty active. Acupuncture has worked in the past but its not doing anything this time.

My last blood test in May was TSH: 0.02 and T4: 23

The Doctor wanted to reduce my dose of 150mg but I asked for a antibodies test which has come back as: Anti-TPO Antibodies 565 U/ml.

I haven't taken kelp or eaten gluten for 4 days in the hope that this will help. I know that it takes a while to improve and I've had 6 month downtimes before but never this bad so I'm looking for any suggestions....x

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greygoose profile image
greygoose

Hi spaneast, welcome to the forum.

Why did you ask for an antibody test when you already know you've got Hashi's? It doesn't go away. It would have been more helpful to get your FT3 tested. It could be that that is low.

No idea what an FT4 of 23 means, because you didn't give the range. Please, please always give ranges when posting blood test results. Your TSH, on the other hand, is exactly where it needs to be for someone with Hashi's.

Four days without gluten isn't long enough to see an improvement in anything. And, your levels of iodine must be sky high, having taken it for 7 years! Why have you been taking it? 900 mg is an excessively high dose. And it really isn't recommended for people with hypo and/or Hashi's.

spaneast profile image
spaneast in reply to greygoose

Hi there. They didn't send me the range for T4 (I got a tx from the doctors) but previously I thought it was between 9 and 24?

I read a study years ago that suggested Kelp and its worked all these years.

For the antibodies test, the doctors have been really difficult and constantly talk about dose reduction. They never test for T4 or T3 unless I request it. I thought that by requesting the antibodies test they might take some notice! Which they have! I have been referred to endos 3 times - every time its because the docotrs want to lower my does, every time the endo agrees that I should keep my 150mg dose.

spaneast profile image
spaneast in reply to spaneast

Also, I have always made doctors and endos aware that I have been taking kelp (and the amount). I've asked if it makes a difference and have always had a muted answer.

greygoose profile image
greygoose in reply to spaneast

That's because they only look at the TSH, and they're terrified of a suppressed TSH. They don't understand that your TSH needs to be suppressed when you have Hashi's. They also don't understand the importance of the FT3 test. But, you need your FT4 and FT3 tested at the same time, to see how well you're converting.

When you say the iodine has 'worked' for you, what exactly do you mean? What do you think it's doing? Taking something like iodine, on the basis of one study, seem a little rash, to me. Did you not research the down-side of idoine? Did you get your iodine tested before starting it? Do you at least take selenium? Iodine and selenium need to be balanced.

spaneast profile image
spaneast in reply to greygoose

when I say "working", I mean that I have energy, I can manage stress, i'm not depressed, hair loss is minimal, I can exercise..kind of normal I suppose.

I did a ton of research years ago about kelp/iodine but am sure there are loads more studies now. After I was first diagnosed, I was desperate as the thyroxin didn't help much and the doctors were not responsive (sorry I can't put down more info...it was a while a go now!) . I went on a strict diet and had a ton of acupuncture and kelp seemed to get my body back on track. I have been able to get on with my life until last year, as I didn't have any symptoms.

I might have been tested for iodine ages ago but not for a while and I don't take selenium but have seen that on a few posts - thanks for the info!

greygoose profile image
greygoose in reply to spaneast

OK, but what makes you think that it's the iodine making you 'normal'? Isn't it more likely to be the thyroid hormone replacement - the levo? If the levo didn't seem to help in the early days, it's probably because your dose was still too low.

spaneast profile image
spaneast in reply to greygoose

That would mean that taking iodine wouldn't make a difference then, which I don't think is the case. Maybe it is placebo - if you have any links to study's re iodine, please forward.

greygoose profile image
greygoose in reply to spaneast

Iodine is just one of the ingredients of thyroid hormone. I don't see how having an excess of one of the ingredients would help anything.

On the other hand, it can cause all sorts of problems in excess - you just need the right amount, no more, no less. More isn't better. It could cause your gland to burn out faster, as you have Hashi's, by stimulating the thyroid, which in turn, stimulates the antibodies. Also, iodine used to be given to hyper people, to reduce their out-put of hormone.

shaws profile image
shawsAdministrator

Welcome to our forum.

When we have blood tests for thyroid hormones we have to have the earliest possible test, fasting (you can drink water) and allow a gap of 24 hours between last dose of levothyroxine and test and take it afterwards.

This procedure allows the TSH to be at its highest as that seems to be the only result Endos/doctors take notice of and adjust hormone replacements according to it. They rarely take Free T4 and Free T3 blood tests and I'll give a link and you can read why these are important for the patients recovery.

Also you should have a B12, Vit D, iron, ferritin and folate as everything has to be 'optimum' not just in range.

Always get a print-out of the results with the ranges. Ranges are important as labs differ in their machines and it makes it easier to comment.

thyroiduk.org.uk/tuk/testin...

spaneast profile image
spaneast in reply to shaws

Thanks shaws, I have an appointment tomorrow so will ask again for a printout. I always take thyroixin and eat before my blood tests - is that incorrect?

greygoose profile image
greygoose in reply to spaneast

Totally incorrect. So, that level of FT4 is a false high. All you've measured is the dose you've just taken.

TSH is highest early in the morning, it drops throughout the day, and drops after eating. So, the best way to test is early in the morning, after fasting over-night, and leaving a 24 hour gap between your last dose of levo and the blood draw. Otherwise, you always have doctors on your back, wanting to reduce your dose. When, in actual fact, you probably need and increase in dose.

spaneast profile image
spaneast in reply to greygoose

Cool OK. I can ask for another test tomorrow and see TSH, T4 and T3 in its 'normal' state

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