Newbie............results for my daughter - Thyroid UK

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Newbie............results for my daughter

16 Replies

Following all the fantastic advice here I have been able to advise my daughter on what to do with her vits levels, and also gluten free diet, etc etc.

My question is this...........she very much wants to go a 'natural' way, and fancies trying NDT. This is rather fraught with supply issues, persuading the GP and so on.

I am reluctant to encourage her choose Levo without the excellent advice to be had on here.

She is not suffering especially with symptoms (yet), my bloods were not as bad as hers and I feel much worse. Hey ho we are all individuals!

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16 Replies
humanbean profile image
humanbean

Your daughter's high ferritin is worrying. Has she been supplementing with anything at all that contains iron? If she has, then she should stop immediately.

Although your daughter's ferritin is only the tiniest sliver above the reference range, it should be monitored to make sure it doesn't continue to rise. I doubt a doctor would show any interest at the moment.

Look at the chart on this page for some causes of raised ferritin. Without other blood tests nothing much can be learned from a high ferritin in isolation :

irondisorders.org/Websites/...

humanbean profile image
humanbean

Vitamin D : Your daughter's level is far too low. Most of us feel at our best with a level around 100 - 150 nmol/L.

To raise the level your daughter needs to take vitamin D3 supplements with a dose of 5000 iU - 6000 iU per day. They are easily bought from Amazon and other sites selling supplements.

Vitamin D3 should be taken with some fat because it is fat soluble.

Vitamin D3 supplementation increases the absorption of calcium from the diet. To encourage this extra calcium into the bones and teeth it is necessary to supplement vitamin K2 as well.

Another essential co-factor is magnesium. Find a supplement that appeals to you in these lists :

metabolics.com/blog/the-def...

globalhealingcenter.com/nat...

naturalnews.com/046401_magn...

Vitamin D toxicity is a possibility. So re-testing occasionally is essential. I suggest supplementing throughout the winter and then re-test in the spring. When optimal levels have been reached then reduce the dose of vitamin D either by lowering the daily dose or reducing the number of times a week it is taken.

humanbean profile image
humanbean

Vitamin B12 and folate : Both of these are too low and should be supplemented.

B12 : Start supplementing with 1000mcg methylcobalamin per day. It should be taken under the tongue and left there to dissolve as slowly as possible - no sucking or chewing. The aim is to get B12 up to at least 500, and preferably up to top of the range. B12 isn't poisonous so going over the range is not dangerous.

Folate : Two or three days after starting to supplement B12, add in a folate supplement. The best way to do this is to take a good quality B Complex. You should buy one that contains methylcobalamin and methylfolate. Popular brands are Jarrows B-Right and Thorne Research Basic B Complex. I'm sure there are others...

shaws profile image
shawsAdministrator

Levothyroxine is the standard that (if in the UK), the doctor prescribes. She should try this first and if after quite a long time as increases are gradual it is raised sufficiently for her to feel well.

Doctors will not prescribe dessicated thyroid hormones as it is not permitted (although many members now purchase their own when they haven't improved with levo or GPs haven't increased sufficiently). The usual name for NDT is 'natural' dessicated thyroid hormones. Even though it's made from pigs' thyroid glands it still goes through a 'processing' ,in order for it to be made into a tablet. A private Endocrinologist will probably prescribe.

Hypothyroidism is a life-long disease and in the UK all prescriptions for any other illness after being diagnosed as hypothyroid are free due to the seriousness of hypothyroidism. It can work out very expensive to source our own for a lifetime. Sometimes the suppliers can run out and there's a dash to try to source elsewhere.

I had to try several alternatives myself and sometimes it doesn't always suit us,

Othes will respond re her blood results :)

humanbean profile image
humanbean

Your daughter's TSH is over 10, but her Free T4 and Free T3 are still within range. This is classified by doctors as subclinical hypothyroidism. To be diagnosed with overt hypothyroidism the Free T4 level would have to be under the range as well as having a TSH over 10.

I always consider the definitions of what constitutes hypothyroidism to be absurd and insulting. To any ordinary person the word subclinical suggests there are no symptoms. But of course, sufferers know this is nonsense.

If your daughter is not being treated then she needs to start on levo, 50mcg per day. Blood tests should be repeated after 6 weeks and dosage then increased by 25mcg per day. This cycle should be repeated until symptoms have gone and TSH is 1.0 or below, Free T4 and Free T3 are well into the upper half of the range and possibly in the top quarter or third of the range. Your daughter needs to find the results that work for her and make her feel as well as possible. Whether your daughter's doctor will co-operate is another matter.

I would not suggest taking NDT at the start. The majority of people do absolutely fine on Levo. It has its advantages - doctors have a slightly better chance of understanding the blood test results because they are familiar with it. People diagnosed and treated with levo are entitled to free prescriptions for life. (Or at least for as long as the NHS lasts.)

If your daughter starts taking NDT, she may never get a diagnosis of hypothyroidism from her doctor. Once thyroid meds are taken the TSH might never again rise as high as it is now. And doctors aren't familiar with the pattern of blood tests that would show with a patient on NDT. Also, prescriptions for NDT are very difficult or impossible to get out of UK doctors, and buying online will be necessary. There are never any guarantees that online buying is safe.

in reply tohumanbean

Fantastic, thanks so much humanbean and shaws for great advice.

Clutter profile image
Clutter

Sleepysusie,

Your daughter will be prescribed Levothyroxine. NDT isn't licensed for UK use so your daughter is very unlikely to have it prescribed by the NHS. Most members using NDT have a private prescription or buy online and self medicate.

The T4 and T3 derived from pig thyroid are the only natural ingredients in NDT. The other ingredients/fillers are synthetic.

humanbean profile image
humanbean

Having high TPO antibodies shows that your daughter has Hashimoto's. Many people with Hashi's find that the fluctuations in hormone levels that occur with Hashi's are difficult to cope with. To reduce antibody activity many people find that going completely 100% gluten-free helps. Some people find going dairy, lactose or casein free is helpful. Taking selenium supplements is also helpful - 200mcg selenium per day.

For helpful advice on living with Hashi's and how to reduce the antibody count look for Izabella Wentz (another Hashi's sufferer) on the web. She has a website, a facebook page, and has also written a book which gets good reviews on Amazon.

in reply tohumanbean

And clutter, thanks

shaws profile image
shawsAdministrator in reply to

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jimh111 profile image
jimh111

Levothyroxine is fine for most patients. NDT is natural but of course it is processed. If I were her I would wait another three months or so and see how she is. She will probably become hypothyroid in the near future but there is a small chance this is a temporary thing. So perhaps wait a little while but of course if she starts to get noticable symptoms ask her GP to prescribe levothyroxine (she will then be entitled to a prescription exemption card). It is also much easier to monitor her blood test results if she is on levothroxine, it is very difficult to interpret the numbers for people on NDT. Symptoms are more important than blood tests. This works both ways, if she has only minor symptoms she can hold off for a while.

SlowDragon profile image
SlowDragonAdministrator in reply tojimh111

If she has not started on Levo yet, she could find some improvement by going gluten free and adding selenium supplements. Both may help reduce symptoms and lower antibodies.

My tsh was 9.28 and ft4 around 13.8 when I was given thyroxine. I was told I had subclinical hypothyroidism but due to my symptoms they treated me after a long fight, I was very unwell though.

Thyroxine is a good medication and it has helped me.

I wish your daughter luck with her treatment and I hope she continues to feel well.

Julie

bluebug profile image
bluebug

One final thing if your daughter is 16 or over she needs to start learning about hypothyroidism plus vitamins and minerals herself. The reason for this is:

1. UK doctors as a general rule are not trained in nutrition, and some give out very bad advice.

2. She is the best advocate for her own health - even though you are helping her now at some point you may not be able to and she needs to have the knowledge/or know where to get information to stand up to doctors and be taken seriously.

Josiesmum profile image
Josiesmum

I recommend this vitamin D, which lasts ages:

amazon.co.uk/Thorne-Researc...

Also, diet can make a big difference. I recommend a nutrient diet such as the Paleo diet. There is an autoimmune version which cuts out many common food sensitivities, and can thereby help in identifying them:

thepaleomom.com/start-here/...

I would def advise her to first get a diagnosis on the nhs take Levo and then maybe in the future if she chooses to take ndt then tell her Gp and get them to help monitor bloods. I did it the other way around and self medicated with NDT. Now I would have to make myself ill for weeks possible months so that my levels drop in order to get an nhs diagnosis. Also as mentioned my tsh may never actually raise again.

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