I thought I'd found the answer and now I'm wracked with doubt.
I've been on here before and got incredibly good advice, with the consensus being that I need a bit more T4. I've tried several times now to ask for a modest increase from 50 one day and 75 the next to 75 every day, and drawn a blank. I have not increased my T3, which is 25 a day split into two doses.
Two events have occurred recently: the first was getting ambushed for my routine thyroid blood test alongside every other the GP does when called in for an asthma review. I'd taken my thyroid drugs about two hours before the appointment and so was not surprised that my TSH was quite low (about 1), and therefore there was no chance of reviewing my thyroid meds.
My most recent private thyroid panel suggested that the T4 was slightly below range, t3 a pretty healthy top third of the range.
I also recently got a Blue Horizons D102 test (along with several other thyroid hormone/DNA tests to check for my ability to process thyroid hormones). These came back with about 7 out of 8 checks telling me that I am not great at processing T4 into T3 and advising me to take iodine.
My diet is largely dairy-free vegetarian and so I don't derive much iodine from food, except eggs.
I have been taking iodine, on and off since the BH tests, and certainly notice an improvement in energy levels when I do. However, I keep reading conflicting advice about iodine and autoimmune thyroiditis. And I recently stopped taking iodine again, to again have days and days of hardly being able to get out of bed as opposed to a few days when I feel some kind of normal if not exactly 30 again.
My question then is who to believe? I'm very worried about overloading my thyroid and triggering even worse heart symptoms (I have fast atrial fibrillation and high BP). Can iodine make someone feel better while quietly making their condition worse?
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DandyThyro
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Do you have enough wiggle room with your Levo script timings to be able to make the increase to 75mcg per day... that way you will get your Ft4 up a bit and be increasing your iodine with the extra T4?
Perhaps you are going away on holiday and could do with an earlier repeat? 😉
Thanks, that would be ideal, at least to try, but there's a problem. I already struggle to get my prescription filled because the 25mcg dose is usually Teva and I'm allergic to it, so with all the fuss about getting me a different brand, the chances of getting a larger amount is zilch.
I'd taken my thyroid drugs about two hours before the appointment and so was not surprised that my TSH was quite low (about 1), and therefore there was no chance of reviewing my thyroid meds.
Taking your thyroid meds 2 hours before your test wont have any effect on TSH, it affects FT4 level (gives a false high result as Levo peaks in the blood 2-4 hours after ingestion).
Things that might affect TSH are certain foods and drink and time of blood draw (TSH is highest early morning and lowers throughout the day).
Levothyroxine contains iodine.It was supplements with iodine in them that set my thyroid all wrong. It made me hyperactive. No antibodies were found and the iodine was the only reason the consultant could suggest. I would be very wary.
Your results sound like you are not on high enough dose
What brand are your 50mcg tablets
Have note added to all prescriptions “No Teva”
what vitamin supplements are you taking
When were vitamin levels last tested
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Day before test split T3 as 3 smaller doses spread across the day with last dose 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Very interesting thank you for posting this. I always say the thyroid is the conductor of the orchestra. Was reading a very good book all about the disease. Its hereditary going down the female line. Underactive. I had to be different & got graves disease. Two different beta blockers at the same time.didn't touch the sides. Offered thyroidectomy or radio active iodine. Didn't research it & no technology then. Opted for Iodine. Scary stuff that 😳 only realised after had it done, 1 tiny pill. Ordered by me @ department of nuclear medications. It came from Germany. I could not take Teva, made me very ill as does lots of other medications that I am legic to, one being hydroxychloroquine fir Mr UDCT disease. Rheumatologist put me on nothing saying let's see how it goes!! Nothing to protect my vital organs & practically my whole body now. I reported him fir malpracticeAll medications are mostly toxic.
I detest toxic drugs.
I now have to tame a couple as they help my condition. Vitamins I only take the purest of the pure. No H&B meds. I take high dose omega 3
High dose vitamin D
Pure magnesium
I know what my body likes & dislikes & research lots on the NHS website.
New area I am I'm now, having to flee & quick as his narcistic & metal abusing me got worse. New Dr's. What a nightmare that was. Have a Dr In this surgery investigating why I was spoken to & treated was shocking. I had my new patient assessment couple of weeks ago. Had
Ian Dr call me as he us not at all happy with my liver results. Wanted to know the name of my consultant who I was seeing before I moved away from area. He is contacting him to get there heads together to find out what us causing my liver results, scans & even a biopsy results didnt showed lots up but not the cause. I say good luck to them both. My biopsy went to Addenbrooks!
Diabetic health assessment last week. Apparently I can not have a small banana every morning with my weetabix & soya suger free milk. I cannot eat as many dark fruits like blueberries & black grapes. I have grown 1/2 a inch lol the whole quick appointment was a nightmare. What I say is do what us right for you. I still have my little banana each morning
I still eat blueberries & black grapes. I do endulge in a cake, biscuit, & other things I enjoy. I went on a NHS course. They even said eat it if you want it. Everything on moderation. Thank goodness she was only doing the assessment & a Diabetic specialist Admiral nurse will call me to discuss what is right & wrong. Cannot wait for it. As one I saw knows nothing really.
There is still a bigger picture to all my
ailments. Having whooping cough when at junior school has a knock on effect. I have forwarded my history of health to the Dr who called me & mentioned whooping cough. I finally think I am getting the help I need & that people are listening to me.
Let's see how it goes. I will keep making appointments if they don't find the treatment I deserve & so does everyone that has health issues
Good luck on your journey try to stay positive & keep banging on doors. Be it consultants, specialists, Dr's. Make a pest of your self x
Thanks for sharing your experience Louby. I'm a bit rubbish at going back and back to GPs etc after several brush-offs and so your story encourages me to keep at it. It really is time to get some help with all this. Cheers x
These came back with about 7 out of 8 checks telling me that I am not great at processing T4 into T3 and advising me to take iodine
It's not 'processing', it's converting. You convert T4 to T3 and iodine has nothing to do with it. Iodine is just one of the ingredients of thyroid hormone - T4 and T3. One molecule of T4 has four atoms of iodine. One of these atoms is removed to make it into T3, with three atoms of iodine. How would taking extra iodine help with that? It doesn't.
Iodine is anti-thyroid in excess. It used to be used to treat Graves' patients before anti-thyroid drugs were invented. However, it can have a stimulating effect on the thyroid when you first take it - which is why you felt more energy, etc. However, that effect won't last forever, and eventually it will make you more hypo.
Given that you are taking thyroid hormone replacement, you're already getting quite a bit of iodine from that:
50 mcg T4 contains about 32.5 mcg iodine.
25 mcg T3 contains about 12 mcg iodine.
And the iodine removed during conversion - remember T3 is converted to T2 and T2 to T1, and T1 to T0 - is recycled in the body. Which is why the daily requirement is low - about 150 mcg a day for a euthyroid person.
Some fruit and veg contain iodine - although not that much - such as beans, strawberries and pineapple. But, given that you are taking thyroid hormone replacement, your thyroid will not be making thyroid hormone and therefore doesn't need iodine. So, you need less iodine, not more.
And, the kicker for me is that excess iodine can trigger thyroid cancer.
There’s a lot of misinformation in your post. In the same paragraph you say iodine is “anti-thyroid” AND has a stimulating effect on the thyroid. Can’t be both. And do you have references to “the effect won’t last forever and will eventually make you hypo”? Also, you seem to not understand that iodine is used for WAY more than just thyroid. Sure maybe the thyroid only needs 150 mcg (and that’s widely debatable), but every single cell, and thus every single organ, has iodine receptors. It’s not just a thyroid mineral. Thus, the daily recommended value it likely way under what a person seeking optimal health would need. Look, iodine is widely debated and the right answer is likely, “it’s different for everyone and every body needs a varying degree of iodine.” But, you should not be telling people to be scared of iodine. It really does make a huge difference in certain peoples lives. But, yes, of course is controversial with Hashimoto’s, and needs to be taken with selenium and antioxidants, But then again many people with Hashimoto’s take iodine with success. Me included.
In the same paragraph you say iodine is “anti-thyroid” AND has a stimulating effect on the thyroid.
Read it again. I say that when you first start taking it it has a stimulating effect. But, as levels build up it becomes antithyroid in excess. After all, as I said, it did use to be used in Graves' patients to bring their levels down before carbimazole etc. were invented.
Also, you seem to not understand that iodine is used for WAY more than just thyroid.
I have never read any proof of that. The symptoms people suggest are due to not having enough iodine for these other things would appear to be symptoms of low thyroid hormone - which would be low if you were low in iodine.
Sure maybe the thyroid only needs 150 mcg
Everywhere I've read it says that the total daily need for an adult is around 150 mcg. Nowhere have I ever read that that is just for the thyroid!
But, you should not be telling people to be scared of iodine.
Actually, I tell them to be scared of excess iodine, not iodine itself.
It really does make a huge difference in certain peoples lives.
If they are deficient in iodine, of course it makes a difference when they take it. But, one should always get tested before taking it to make sure one needs it. OK, I didn't actually repeat that above, but it's been said so very many times...
So, no, I don't think there is a lot of 'misinformation' in my post. There are a lot of things you disagree with, but that doesn't make it misinformation. And I do speak from bitter experience.
Yes, all good points. Sorry I really didn’t mean to come at you hot. And I really, really don’t want to add to the constant insane rhetoric around iodine online. It’s already pretty confusing. Sorry, I was probably in a bad mood when I wrote that, and you’re right in saying that I more so “disagree” with you. I think you made some good points and iodine absolutely has the ability to wreak havoc, but can also be helpful on some individuals. The Iodine Crisis is a profoundly important book if you are wanting to research more. Regardless it sounds like you’ve had a bad experience with it, and actually I have too, but am “back on the wagon” so to speak for the other health benefits it has like estrogen metabolism and dissolving cysts—both things I need in my particular journey. I sincerely wish you all the best.
I would just say that I have a lot of cysts - I even have one on my brain ! - the iodine never did anything for them. I had one surgiaclly removed, but the rest are still ther.
It was iodine supplements that were responsible for sending my thyroid haywire. I have no autoimmune disease or familial history of thyroid problems. Iodine was the only cause the endocrinologist could suggest as to why I had a major thyroid problem I had supplemented with iodine at 100% of daily dose for at least 4 years prior.
I would not advise anyone to start taking iodine unless they had been tested as deficient .
My doc says a use a 24hr urine catch for the lab. The "hat" sits on the toilet seat. Then, it is poured into their container. All must be kept cold. I line a cooler with a bag with ice/ice pack under it. When done it is transported in the cooler to the lab, asap. Many important labs can result from this kind of lab if ordered by an astute physician.
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