Stevodat: Hi Guys, New to this forum but have... - Thyroid UK

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Stevodat

Stevodat profile image
18 Replies

Hi Guys,

New to this forum but have 7 years tackling & experimenting with nutrition for Hashimotos.

With a keen background in nutrition I was determined to address it with this and avoid any thyroid drug interaction if possible.

My antibodies were as high as 3500 at worst and are now 528 and dropping. My TSH has been as high as 4.8 but is now 1.2. Both free T4 & T3 are in the accepted health range now.

During this time I had good access to available testing every 3 months so any changes were then easy to track back to nutritional changes I'd made.

Without going through all the compounds I've tried during these years and there were many, the ones I now take on a daily basis are as follows:

Totally avoid gluten foods where possible including liquids (ie. beer)

Hi Dose Vitamin / Mineral & Trace element supplement. (USANA)

Hi Dose magnesium (varied types) - 1000 mg / day (divided doses)

Hi Dose Vitamin D3 - 20,000iu / day. (originally on 10,000 iu but results better on 20K)

Vitamin K2 (mk7) - 200mcg daily

Vit B3 - 500 mg daily

Zinc - (varied types) - 50 mg daily

Quercetin dihydrate - 600 mg daily for 6 months - (now on 300 mg daily)

NAC - 750 mg daily

Selenium (methionine form) - 350 mcg daily

Aloe Vera Gel - 50 mls daily (on empty stomach)

Inositol - 600 mg daily

Ashwagandha - 300 mg daily

Every second day - Ginger 500 mg, tumeric 600 mg, GSE 450 mg

Iodine - 12 mg (Lugols's 5% soln.) - WEEKLY.

Black seed & oil / Flax oil mix & kefir is used with a gluten free cereal for breakfast.

It sounds like quite a process but once underway it flows quite well.

I now feel better consistently than any time in the past 7 years and can play sport

and do whatever I like.

Hope this may help someone.

Regards, Steve

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Stevodat
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18 Replies
greygoose profile image
greygoose

Hi Stevodat, welcome to the forum. :)

With a keen background in nutrition I was determined to address it with this and avoid any thyroid drug interaction if possible.

What do you mean by 'thyroid drug interaction'? Do you mean that you're trying to avoid taking thyroid hormone replacement? I rather fear that that is impossible. Do you know how Hashi's 'works'? Your immune system is attacking and slowly destroying your thyroid. Sooner or later, there won't be enough thyroid left to make the amount of hormone you need to keep well. And you cannot replace a hormone with a vitamin.

My antibodies were as high as 3500 at worst and are now 528 and dropping. My TSH has been as high as 4.8 but is now 1.2. Both free T4 & T3 are in the accepted health range now.

Your antibody levels are totally irrelevant. They do not signify anything much. They fluctuate all the time, and tend to be highest during and just after an immune system attack, when they come along to clean up traces of TPO and Tg that have leaked into the blood.

And, by the same token, your thyroid hormone levels - and thus the TSH - tend to fluctuate according to whether the thyroid is under attack or not. But none of that has anything to do with nutrition.

Hypos usually have low nutrients, due to low stomach acid levels. And optimal nutrients are essential for well-being. So, almost all of us supplement a lot of the same nutrients as you, but it doesn't make any difference to the Hashi's. We always suggest that people get their vit D, vit B12, folate and ferritin tested and supplement according to need. Taking more than you need is never better, and can be dangerous with things like vit D.

Just taking one B vit is not helpful because the Bs all work together, and need to be kept balanced. Better to take a good B complex.

Be very careful with NAC and ashwagandha. NAC can down-grade conversion of T4 to T3. And ashwagandha can reduce cortisol.

Iodine is never recommended on here, especially not with Hashi's. It can make everything a lot worse. If the cause of your hypo is not iodine deficiency then taking iodine is not going to help.

Many Hashi's people are gluten-intolerant, even if they don't have Coeliac Disease, so cutting out gluten relieves a lot of their symptoms. But that doesn't mean it will cure their Hashi's.

It's very kind of you to reach out to try and help people, but I think this is more likely to confuse than help. You cannot cure Hashi's and you cannot avoid thyroid hormone replacement forever. Sooner or later it will catch up with you.

Stevodat profile image
Stevodat in reply to greygoose

Hi Greygoose and thankyou for your input.Sorry if I confused the subject but I was not attempting to replace any thyroid medication with vitamins or anything else.

My aim was to reduce / eliminate the internal inflammation that is causing the basic problem.

That we do have control of the right food types and supplemation.

In my case, for a condition that was totally out of control with many symptoms and now be symptomless for many months, something has clearly changed for the better.

The tests (TSH, free T3 &T4 and antibodies) have all improved to the point where they are the best in many years.

This is not luck, it's managing food choices and supplementation by trial & error over time.

There are 2 camps regarding Hashimotos.

One claim it cannot be improved and is inevitable. The other inc. my Doctor (a Thyroid specialist) experiences just what I have now achieved on a regular basis.

The results speak for themselves.

I was not trying to influence anyone to take anything, but simply impart what has & is working for me and others.

If you don't change something, you end up with the same result.

That's how we improve.

Take care greygoose and I wish you well with your health issues in future.

Steve

greygoose profile image
greygoose in reply to Stevodat

I see. Your original post came across as if you were talking about curing Hashi's.

But I would argue that the basic problem is not inflammation, it's lack of thyroid hormone. The thyroid hormone T3 is needed by every single cell in the body to function correctly. If you haven't got enough to go round because your thyroid cannot produce enough, then all the supplements in the world aren't going to help. You need to take thyroid hormone replacement, and not once did you mention that.

I would also argue that Hashi's is a very unstable condition due to its very nature, and that just because you are symptom-free right now, doesn't mean you won't be next month, or next year. Everything fluctuates and inbetween you get periods of euthyroidism, which is when so many people believe they have cured their Hashi's. But they haven't. Over the years I've seen it all on various forums. Your claims are nothing new. And I also had a doctor who was a Hashi's specialist (now retired) - he had it himself, and he was of the opposite opinion to your doctor. So, being a specialist doesn't really mean very much as there is no consensus among them.

But that's what this forum is all about: exchanging tips on what has worked for us, and what hasn't, knowing that we are all so very different and individual. I just don't want people that are new to all this to get the idea that you can over-come Hashi's with vitamin pills and don't need thyroid hormone replacement, because you actually need both.

Stevodat profile image
Stevodat in reply to greygoose

Hi Greygoose,Yes I got the feeling you did assume too much from my first comment.

I never said I cured it, only relieved all symptoms after 7 years. When I was doing nothing, nothing changed ! Since my diet has been altered and the supplements fine tuned, much has been achieved.

I may well get symptoms back again as you claim, but after 7 years of trials, I may just not either.

One thing we do agree on, it is a complex process and without trial & error - nothing is gained. I may well require thyroid medication in future but currently tests show I have no shortage of T3 and TSH has continued to go down. This is common to the situation and of this I'm pleased.

We are all learning and I am willing to change my strategy should the need arise. Till then it remains.

Again I wish you well with your choice in direction and welcome to hear of any other nutritional changes you encountered that helped.

Regards Steve

greygoose profile image
greygoose in reply to Stevodat

My 'assumptions' were based on this; With a keen background in nutrition I was determined to address it with this and avoid any thyroid drug interaction if possible. Which is obscure to say the least. Maybe you should be a little clearer in what you say.

And, just for the record, i didn't have any choice in direction. By the time I finally got a diagnosis, my thyroid was all but dead. Apart from that, I do what most people on this forum do, get tested and take the supplements I need and that make me feel better. I'm afraid your approach is nothing new. It's what most of us do.

Stevodat profile image
Stevodat in reply to greygoose

Hi Greygoose,I read your bio and I see you have certainly been through the ringer over the years, interesting reading !

I feel for you. Out of interest you made no mention of any nutritional supplementation you took to avoid any deficiencies you may have had. You mentioned you did not get tested for Vit d.

Why did you not consider this ?

What else did you take nutritionally if you don't mind sharing this.

Steve

Buddy195 profile image
Buddy195Administrator

A word of caution re selenium; doses of above 400ug per day have been shown to be toxic.

In the past, I have supplemented with 200ug when diagnosed with active Thyroid Eye Disease (as studies have shown it can help mild/ moderate cases if taken for 6 months). I then reduced to 100ug. Selenium supplementation did reduce my antibody levels (however, they still remain over range).

As Brazils can contain 50-90ug selenium each (depending on selenium content of soil where grown) it’s not advisable to take a selenium supplement AND eat a couple of Brazils a day.

Stevodat profile image
Stevodat in reply to Buddy195

Hi Buddy,Yes selenium & Iodine is a double edged sword. Only after trial & error and much testing was I able to settle on the amounts I currently take. These are tested to maintain current levels.

Both result in symptoms if used in excess.

Again, they are not taken singly, they are combined with a mix of ther nutrients the safeguard their use and work together.

I have experienced marvellous overall results with high dose Vit D3 when combi ed with Vit K2 not only with hashimotos.

I carefully monitor blood calcium levels as a precaution. Aches & pains & general aging symptoms have subsided.

It's like most things, if you research current medical science and make decisions based on this, it's a good start.

Take care Buddy.

asiatic profile image
asiatic

It was interesting to read your post. I believe nutrition to play an important and under researched role and applaud your tenacity in experimenting to find what works for you. However, I don’t feel able to make the leap to say getting the nutrition right can stop AITD progressing. Perhaps it can for some or perhaps it may delay the inevitable. Can you supply a little more information. Have you ever taken thyroid hormone ? Can you share a summary of your thyroid panel results - were they ever substantially out of range ?

Stevodat profile image
Stevodat in reply to asiatic

Hi Asiatic,Firstly, no to date I have not taken any form of Thyroid medication.

My current Thyroid results are as follows :

TSH - 1.2, Free T4 - 11, Free T3 - 3.5, TP ab - 528, TG ab - 66.

At worst they were TSH - 3.6, T3 & T4 similar to above, TP ab - 3500, TG ab - 268.

One thing I proved over time elevated all results was fishoils. My Thyroid Doctor said avoid them at all cost. My results & symptoms only worsened when on them. I now use organic Hemp oil from the local grocer. Thankfully results continued to improve thereafter.

I don't have all the answers but with some I'm convinced. Maintaining high Vit D3 levels is vital. I now keep mine between 200 - 300 nmil/l. - no side effects if taking Vit K2 200mcg and watch calcium levels in blood tests.

I hope this explains some issues.

Regards Steve

asiatic profile image
asiatic in reply to Stevodat

So in summary - FT4/FT3 levels showed little change, AB levels varied ( which they normally would do ), TSH showed a very small downward trend rather than an increase if your thyroid was starting to struggle and you found , as is stressed almost daily on the forum, a good level of Vit D is vital. You say you relieved all your symptoms, but were they symptoms of AITD or something else. Symptoms usually mirror FT3 levels which you say didn’t change. I do not doubt your experimenting has had a positive result health wise but for me it is just too big a leap to hope it will have any effect on protecting you if antibodies decide to go rogue.

Stevodat profile image
Stevodat in reply to asiatic

Hi asiatic,Regarding the symptoms I encountered, they were all typical hashimoto symptoms ie. Intolerance to cold, poor sleep, terrible lethargy, reduced overall strength, low mood & short tempered,memory loss - brain fog, low sex drive, chronic vertigo, white skin patches, sensitivity to light, vocal fatigue and several other annoying symptoms.

I had viral scans & parasite tests done to rule these out also. Only Blasto showed up and was treated accordingly.

That was basically 7 years of trauma. Now all gone and able to exercise, play squash and do as I please for over 3 months now.

I was not against taking thyroid medication but my doctors advice was first to try and offset deficiencies and use meds as a last resort.

So far so good.

Steve

asiatic profile image
asiatic in reply to Stevodat

It has been interesting reading your journey. I do believe nutrition plays a part and I hope your good health continues. Unfortunately in the UK it would be almost impossible to find a doctor willing to work and experiment with a patient presenting with your thyroid function results.

LifeintheMed profile image
LifeintheMed

Hey there, I'm new too.

I like your positive post and I like Grey Goose's caution.

I figure it's all worth working on and seeing how far we can go with helping our systems to manage.

I'm a bit confused Grey Goose by some of your comments as on this forum I've seen a lot of people reference the thyroid pharmacist (can't remember her name, sorry) who seems to quite clearly believe that Hashimoto's can be put into 'remission'. I'd love to understand this better.

Sparklingsunshine profile image
Sparklingsunshine in reply to LifeintheMed

I guess it depends on what you mean by remission. The lady you are referring to is Isabella Wentz who has Hashis herself, she also plugs a lot of expensive supplements which always makes me instantly cautious.

If by lowering antibodies or slowing down the autoimmune attacks then going gluten and or dairy free can help some with that, selenium supplementation can be helpful as well. But once the thyroid is damaged and is no longer producing hormones then taking thyroid replacement is inevitable and unavoidable. So remission in the sense of reversing the damage and returning to a euthyroid state then no.

elaar profile image
elaar

"My TSH went as high as 4.8"

Most doctors would class that as normal still, or sub clinical. I had very few symptoms when mine was at that level pre-medication, but then it jumped to 37 that's when everything went wrong, and no amount of nutrition altering was going to fix that.

My personal view (and hence perhaps wrong) is that you have to tackle the thyroid insufficiencies to improve nutrition, rather than the other way around.

The autoimmune dysfunction is extremely complex and it's highly unlikely that nutrition is going to alter this process.

A key factor that is often covered is the conversion of cholesterol into one of the factors of bile acid, which the thyroid has a major role. Without this, nutritional absorption is limited, along with a whole host of gastrointestinal issues. Accompanied by the right level of thyroid hormone levels for optimal intestine transit times, necessary for correct bacteria levels and a well functioning mucosal layer. It's an extremely complex system with many feedback loops.

Many papers directly connect the bacteria-mucosal layer interactions as the potential source of the autoimmune dysfunction, but it's a complex system and hence research is limited, and the supplements you've listed aren't going to have any effect on this part of the gut process. This is why gluten cessation is often recommended, as there is a direct relationship between gluten and bacterial response in the gut in some people, and hence the autoimmune response may decrease.

Nutritional supplementation for most is to make up for issues the thyroid creates, and an attempt to improve the T3 conversation, and potentially makeup for the small quantity of T3 the thyroid used to make directly.

Stevodat profile image
Stevodat in reply to elaar

Hi Elaar,Thanks for your input.

Most genuine thyroid hashimoto experts would agree the gut impermability is the root of their problem - as is most auto immune conditions.

Although I actively avoided gluten, I agree that was only part of the problem.

In addition to the nutrition I undertook, I worked on gut repair also. I consciously took 50 - 100 ml of Aloe Vera gel every morning on an empty stomach.

An hour or so later for breakfast I consumed a combo of flax seeds & oil, black cumin oil and glutamine powder with as mentioned an amount of gluten free cereal. This was mixed with hi probiotic organic kefir. All this is available at the local grocery store.

This was my approach to assist gut repair.

I have no way to prove why my results & symptoms improved - whether it was this or my nutritional intake - but I'm sure it's not just good luck. I'm 67 now and been fighting this for 7 years - there's no other good reason why it should improve.

Time will tell.

Steve

tattybogle profile image
tattybogle

due to lack of research /data , (cos they are not tested very often), it's hard to conclude anything with any certainty from antibody results .

eg. i too had TPOab >3000 at diagnosis/ starting levo 21yrs ago ,

8 years ago they were 195 ..... and are currently 101 . (no idea what they were in between these tests).

they have fallen massively despite the fact that i eat continue to eat gluten regularly , have never made any dietary changes/ exclusions , and only started testing/ improving some vitamin levels etc in the last 3 years or so.

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