13 year old with Hashimotos- should we try ndt?... - Thyroid UK

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13 year old with Hashimotos- should we try ndt? Anxiety, constipation, brain fog and trouble sleeping :(

nikkilou77 profile image
14 Replies

Hi - my daughter is currently on Levothyroxine 50mcg daily- she suffers with anxiety, constipation, brain fog and difficulties falling to sleep. She also tends to have dips in energy during the day and flushed cheeks which we thought was related to adrenals. (We tested cortisol levels and although low are in range)

Thinking of switching to ndt to see if can improve symptoms - not sure what tests other than rev T3 we should be doing next ..

Recent results :

Peroxidase antibodies 1029 (<35)

B12 558ml/g (197-771pg/ml)

Ferritin 29ug (13-150ug)

Tsh 2.15miul (o.27-4.2)

Free t4 15.5pmol/l (12-22)

Serum globulin 20g/l (25-35)

Serum creatinine 48mmol/l (55-77)

Any advice much appreciated - she is gluten free and largely following paleo diet.. she’s very sensitive to any supplements..

Am planning on starting magnesium, zinc and vit c , iron one at a time so can see which she reacts to ..

Thanks for any help you can offer -Xx

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nikkilou77
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14 Replies
Jazzw profile image
Jazzw

Have you already asked her GP for a raise in levothyroxine? She’s currently under-replaced—there’s scope there for a raise with her TSH being where it is. I think that would be my starting point. The problem with sourcing NDT is that you nearly always end up having to source it alone, at considerable expense and forever worrying about whether your supply will be met. It’s more of a last option than a first option.

Marz profile image
Marz

Ferritin would be better around mid'range. Needed to aid conversion of T4 to T3. Low Ferritin could mean low serum iron which could be causing fatigue. I would suggest a FULL Iron Profile with your GP.

jimh111 profile image
jimh111

Her levothyroxine dose is a little low, there is room for 25 or 50 mcg more. It would have been useful to have fT3 measured but I wouldn't bother doing another test until she has been on a higher dose for a month or more. A reverse T3 assay is a waste of time and a lot of money, it doesn't tell you anything.

I would not put her on NDT unless it is absolutely a last resort. It can have serious consequences for you and your daughter bbc.co.uk/news/uk-england-h... . (I'm not supporting this anti NDT attitude, NDT should be available on NHS prescription).

nikkilou77 profile image
nikkilou77 in reply tojimh111

Thanks I need to do lots more research .. need to see if she is converting t4 to T3 but unsure how ..

I’ll discuss increasing levo

Thanks

shaws profile image
shawsAdministrator in reply tonikkilou77

I think doctors are completely unaware that T4 (levothyroxine) is an inactive hormone and has to convert to T3 - the active thyroid hormone and brain and heart has the most T3 receptor cells.

Blood tests for thyroid hormones should always be at the very earliest, fasting (she can drink water) and allow a gap of 24 hours between last dose and test and take afterwards.

They rarely test Free T4 and Free T3, both of which should be in the upper part of the ranges.

You can get a home pin-prick test and if you decide, make sure daughter is well hydrated a couple of days before blood test.

thyroiduk.org/getting-a-dia...

thyroiduk.org/managing-your...

thyroiduk.org/managing-your...

SeasideSusie profile image
SeasideSusieRemembering in reply tonikkilou77

nikkilou77

need to see if she is converting t4 to T3 but unsure how ..

The way to see if she is converting T4 to T3 is to get TSH to 1 or below which gives the highest possible FT4. Then you measure TSH, FT4 and FT3 from the same blood draw. If FT4 is high in range and FT3 is low in range then conversion is poor. For example:

Poor conversion:

FT4: 20 (12-22) = 80%

FT3: 4 (3.1-6.8) = 24.32%

Good conversion:

FT4: 20 (12-22) = 80%

FT3: 5.75 = 71.62% (or above)

Useful calculator - chorobytarczycy.eu/kalkulator

Tsh 2.15miul (o.27-4.2)

Free t4 15.5pmol/l (12-22)

The aim of a treated Hypo patient on Levo, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. Currently her TSH is far too high for someone on Levo and her FT4 is only 35.5% through range. She needs an increase in her Levo, 25mcg now, retest in 6-8 weeks.

nikkilou77 profile image
nikkilou77 in reply toSeasideSusie

Thanks is it worth me getting t3 and T4 tests now to see if conversion a problem ?

SeasideSusie profile image
SeasideSusieRemembering in reply tonikkilou77

nikkilou77

I think it's best to get TSH lower first, it needs to be down to 1 or below to give the highest possible FT4 and then you can see how well she converts. So first thing is to get an increase in Levo, retest 6-8 weeks later. Once her TSH is down to 1 then if GP wont test FT4 and FT3 go private. The only private company who will do tests for under 18s is Blue Horizon.

nikkilou77 profile image
nikkilou77 in reply toSeasideSusie

Can I work it out from free t4 and total T3 results ? Thanks x

SeasideSusie profile image
SeasideSusieRemembering in reply tonikkilou77

nikkilou77

Total T3 is an outdated test and doesn't tell us what we need to know. It's the total of T3 that is bound to proteins and unbound (free). It's the Free T3 that tells us what's available for the cells to use. You can have a good amount of Total T3 but the Free T3 can be low, so it's the Free T3 that's the important test.

humanbean profile image
humanbean

Am planning on starting magnesium, zinc and vit c , iron one at a time so can see which she reacts to ..

I would start with vitamin C immediately, then add the magnesium in a week, then the zinc a week or two after that.

Vitamin C helps the body to absorb iron.

Zinc - Don't buy a dramatically high dose of zinc - excessive zinc can lead to symptoms on its own, but can also lead to a copper deficiency. When zinc is low, copper tends to be high. When zinc is high, copper tends to be low. There can be exceptions, but most people with thyroid disease tend to have low zinc and high copper.

Personally, I take 30mg zinc orotate per day.

This is worth reading :

en.wikipedia.org/wiki/Zinc#...

and this :

en.wikipedia.org/wiki/Dieta...

Magnesium - There are lots and lots of ways to take magnesium, some better than others, and depending on people's preferences and health problems they should choose one that fits their own requirements. Magnesium can be sprayed on the skin, put into the bath, sprayed into the mouth, swallowed in powder or tablet form. For more info on magnesium supplement options :

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

Note that in order to excrete any excess magnesium people must have reasonably functioning kidneys before supplementing.

Personally I take magnesium citrate powder in water - roughly 1/2 a teaspoon per day. It can be bought in tablets but they tend to be enormous, which is why I use the powder. It has a slight laxative effect which may be helpful to some people. Magnesium is best taken in the evening because it is relaxing and can make some people a bit sleepy.

Iron - On the subject of iron, be aware that supplementing iron isn't a trivial thing - it can be complicated, and is poisonous in overdose. It is important to know more about iron than just a ferritin level. See this link for more info :

healthunlocked.com/thyroidu...

Some nutrients make people feel ill quite quickly if they are overdosed, but having too much iron in the body might not cause symptoms until levels are very high and already doing damage. The body has no natural mechanism for getting rid of excess iron.

I would suggest delaying considering iron supplements for your daughter. Instead you might want to try increasing her iron intake. Liver is the well-known source for iron in the diet, but there are some other sources - see this link :

dailyiron.net/

Some people on the forum have raised their levels of iron and ferritin from low to optimal with just one serving of liver per week. 200g per week should be the maximum intake of liver because it has other nutrients such as vitamin A that shouldn't be overdosed. Some people can only eat liver by mincing it up and putting it into other meat dishes to hide the taste.

Some useful info on iron generally :

rt3-adrenals.org/Iron_test_...

I struggle to absorb and to hold on to iron and have to take a maintenance dose of iron supplements a few days a week - but I got to this point with lots of trial and error and lots of testing. One problem (of many) that I eliminated by optimising my iron as well as I could is that it got rid of my anxiety.

There has also been some relatively new research suggesting that iron supplements work better if they are given on alternate days rather than every day :

Iron absorption from oral iron supplements given on consecutive versus alternate days and as single morning doses versus twice-daily split dosing in iron-depleted women: two open-label, randomised controlled trials

sci-hub.tw/https://doi.org/...

I am not aware that this particular research has been replicated yet.

If your daughter has problems with her weight, now or in the future, be aware that iron is very important in helping to maintain a healthy weight :

youtube.com/watch?v=PtczW43...

nikkilou77 profile image
nikkilou77 in reply tohumanbean

Thanks thats really useful - what dose of vit c do you recommend ?

My daighter is super tall and skinny with thick hair - looks super healthy sadly diesnt feel it x

humanbean profile image
humanbean in reply tonikkilou77

500mcg - 1000mcg (equivalent to 0.5 - 1 gram) per day should be enough, although I know some people take lots more than that without any problems.

An interesting link on vitamin C :

lpi.oregonstate.edu/mic/vit...

Note that there are other forms of vitamin C besides ascorbic acid, if your daughter can't tolerate it in that form.

lpi.oregonstate.edu/mic/vit...

lpi.oregonstate.edu/mic/vit...

HLAB35 profile image
HLAB35

I just saw your most recent post and, like many here, can see from here she's undermedicated. Personally, I think she should stick to the Levo and you could try trialling Metavive I (the lowest dose) before bed, which is when she struggles to sleep. Her Ferritin is too low (periods?) Often girls at this age (right up to their late teens) can have very unreliable periods. It's essential her vitamin D levels are good as this vitamin is actually a master hormone that not only pulls in Calcium, but helps regulate menstrual cycle. Taking Magnesium will help get the levels up. For better Ferritin levels, vitamin C is vital, so are vitamins A and amino acids.

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