Hashimoto's and normal levels

[ElleJay369]

I am getting to the point of desperation. When I lived in Canada I was diagnosed with under active thyroid and received natural T3 and T4 meds. Since returning to the UK ten years ago I have been unable to get my medication as the levels are different here. Not only that but having done my research and through trial and error I have realised that I have Hashimoto's - which comes up as normal levels until it is too late. Along with the other classic symptoms (including my Vit D level being around 80% lower than it should be) my hair has fallen out significantly and has stopped growing all together (I have not had it trimmed in over 3 years). I am desperate and the only reaction I get from my doctors each time I go to them is a shrug and raised eyes that I'm bothering them again. How can I get them to listen to me and if a miracle occurs and they do listen - what is the best medication (preferably natural) that I can get in the UK to treat Hashimoto's. Should I still be on T3 and t4? Please help!

[SeasideSusie Remembering]

When I lived in Canada I was diagnosed with under active thyroid and received natural T3 and T4 meds.

What natural T3 and T4 meds did you receive in Canada?

Since returning to the UK ten years ago I have been unable to get my medication as the levels are different here.

What happened when you registered with a UK GP? Did you bring your medical records with you or were they forwarded from Canada?

If you had a diagnosis of hypothyroidism in Canada, that diagnosis is for life wherever you live.

Why have you been unable to get any medication for your hypothyroidism? You would probably have been prescribed Levo.

Are you saying you haven't taken any thyroid meds for 10 years now?

Regardless of what the reference ranges are here in the UK, if your levels are within range when on thyroid meds then that just shows that your medication is doing it's job.

What are your latest results for

TSH

FT4

FT3

Thyroid antibodies

Please post them with their refererence ranges.

my Vit D level being around 80% lower than it should be

What is this level and what are you doing about it?

What are your current levels of

B12

Folate

Ferritin

what is the best medication (preferably natural) that I can get in the UK to treat Hashimoto's.

Hashi's isn't treated, there is no treatment, it's the resulting hypothyroidism that's treated. Probably the only way to get a natural treatment - and the only one is NDT and it's only the pig's thyroid part that is natural, the fillers making the tablets are synthetic - is to buy it yourself either with a prescription if you can get one from a private doctor (unlikely that a NHS doctor will issue one but occasionally some do) or buy without prescription from Thailand.

Hashi's information:

You can possibly help reduce the antibodies by adopting a strict gluten free diet which has helped many members here, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Should I still be on T3 and t4?

No-one can answer that until we see the test results/reference ranges mentioned.

[ElleJay369 in reply to SeasideSusie]

I will have to ask about the medical records - as far as I know they were forwarded. My GP here insisted that the tests be done here and they came up border line; they did not however do the full range just T3 and T4. I will ask about the 'diagnosed for life' though. They are reluctant to do them again due to the cost and don't want to do the other ones - again due to the cost. My Vit D was around 12 as far as I recall. That test took ages to get out of the doctor. Once results came in I was prescribed 25,000u of vitamin D daily for a few weeks, but when I went back for a repeat prescrip and/or another test to see how they were doing I got an annoyed 'tsk' and "i'm not going to do another test just to see how your levels are now; you'll be fine!" I can't recall the exact name of what I was presried in Canada. Something like Armour, but I was sent to a compounding pharmacist who made them himself. (please also see further comments on my Reply below. Thank you for your kind response.

[ElleJay369 in reply to ElleJay369]

I forgot to add - I also used to get a regular B12 jab once a month and was diagnosed with Pernicious anaemia. I respond poorly to iron supplements. Here I am told that I am not anaemic ("low but not bad enough to do anything about) My ferritin levels were 'low, but within the normal range' but to be honest I have little faith in these tests. I just wish doctors would return to treating the patient holistically and not relying on tests that are flawed.

[SeasideSusie Remembering in reply to ElleJay369]

Hypothyroidism is generally a life long condition requiring treatment for life with replacement thyroid hormone.

Sometimes there is temporary thyroiditis which can be caused by a viral infection or pregnancy.

Then there is autoimmune thyroiditis, aka Hashimoto's, which is where the immune system attacks the thyroid and gradually destroys it, causing full blown hypothyroidism.

So unless you had temporary thyroiditis you will need replacement hormone.

"My GP here insisted that the tests be done here and they came up border line; they did not however do the full range just T3 and T4."

Tests should be done annually anyway, so if you were on Thyroid replacement hormone and had borderline results then you were undermedicated.

"They are reluctant to do them again due to cost"

I can't find the link now but thyroid tests costs a little over £1 each from what I remember.

Doctor's say that Vit D testing is expensive. You had your loading doses. Ideally level should be retested when loading doses are finished so you know how much to continue with, but most doctors won't repeat them. In this case we have to do private testing which costs £29 with an NHS lab who offer a fingerprick blood spot test to the general public. If we have been severely deficient, as you were, then supplementing with a maintenance dose is for life so we need to retest ourselves twice a year and buy our own supplement.

Iodine is contraindicated with hypothyroidism, unless tested and found to be deficient. Iodine used to be used to treat overactive thyroid and can make hypothyroidism worse. It's not recommended where Hashi's is present.

thyroidpharmacist.com/artic...

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you add results here if you have them

Or come back with new post once you get results and ranges members can advise on next steps

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first




Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

[ElleJay369 in reply to SlowDragon]

Thank you so much for this advice. I have a blood test early next week and then return visit to the GP on Friday. I am gluten intolerant as when I eat that or wheat products my stomach swells so much I look five months pregnant. What led me to discover Hashimoto's was in my attempt to self medicate out of frustration. I took Lugol's Iodine as it is supposed to help under-active thyroid; I put 7lb on in five days, all on the tummy and thighs ( which apparently is a common reaction with Hashimoto's), my b/f thought I was pregnant! It has been virtually impossible to shift.

[SlowDragon Administrator in reply to ElleJay369]

Hashimoto's and iodine don't mix

drknews.com/iodine-and-hash...

thyroidpharmacist.com/artic...

Most people on here test privately....it's not worth the argument with GP and labs won't test FT3 or even FT4 a lot of the time

Getting full Thyroid and vitamin testing is first step

Getting vitamins optimal.....not just within range

Thyroid levels too. GP's frequently underdose

As you add gluten intolerant, gut is affected

It's more likely to need addition of small dose of T3

But getting "ducks in a row" first of optimal Levothyroxine dose and good vitamin levels

Dionne at Thyroid Uk has list of recommended thyroid specialists, many of whom will prescribe T3

[ElleJay369 in reply to SlowDragon]

thank you so much for this. I feel like crying that someone is finally listening to me. I used to be prescribed T3 and T4 in Canada. My one concern with Levo is that I've read some threads that say the hair loss can get even worse (my hair has not grown for three years and I've lost a lot; what I have now is not much more than fluff.) Is this a real risk or would i be better asking only for the natural thyroid? Sorry, I'm asking something that could only be a 'try it and see' case, but I'm desperate to avoid any further hair loss and hopefully start growing my hair again.

[SlowDragon Administrator in reply to ElleJay369]

Hair loss with Hashimoto's is often low ferritin or low zinc

thyroidpharmacist.com/artic...

hypothyroidmom.com/10-thing...

You already know you have low ferritin

What's GP been doing to improve low ferritin

Eating liver or liver pate once a week, plus other iron rich foods plus daily vitamin C may help improve iron absorption

You can test zinc via Medichecks or Blue Horizon