How to take 'Natural' desiccated Thyroid ?

[legsgran]

Hi, 67 year old newbie Gran here - have been on Levothyroxine 100 for 15 years. Was hospitalised 2 years ago and given massive doses of Prednisone (steroid). Every since getting of the Prednisone I have had terrible symptoms, fatigue, fibromyalgia, tinnitus, my eyebrows fell out (!) etc. I am convinced I need T3 (my mother suffered terribly from hypothyroidism) so have bought some desiccated Thyroid pills 130 mg (2 grains) from abroad. My docs don't want to know, so wondered if anyone has advice on how to start taking it. Do I cut down on my Levothryroxine by, say 50mg, and take, say, 1 grain of the desiccated to start? Or do I just add the desiccated thyroid? Or just swop one from another. Nervous!! Any advice gratefully received. x

[SeasideSusie Remembering]

legsgran

Welcome to the forum.

Before anyone can make any suggestions, we really need to see your current test results (including the reference ranges as these vary from lab to lab) for the following:

TSH

FT4

FT3

Thyroid antibodies

Vit D

B12

Folate

Ferritin

If you don't have them then they need testing before you do anything about changing from your current thyroid meds.

We have recommended private labs that can do all those tests in one bundle (by fingerprick or venous blood draw) if you can't get them all done with your GP. Please ask if you'd like details.

[legsgran in reply to SeasideSusie]

ok, am getting a private test done, will be back with results - thanks!

[SeasideSusie Remembering in reply to legsgran]

If you haven't already ordered your tests, then these are the two most popular, either one would be fine as they are very nearly the same:

Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func...

I think this is on offer until the end of February. After that you can use code THYROIDUK for a 10% discount on any test not on special offer

or

Blue Horizon Thyroid PREM IUM GOLD bluehorizonbloodtests.co.uk... Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences: For the fingerprick test: Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml) Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test. B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12. Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.

[legsgran in reply to SeasideSusie]

thanks so much, went for a much cheaper one £29.00, but it just does T4 and T3 and a couple of other things. I already take Vitamin D by prescription, so know that is ok. I get my thyroid checked regularly at the GP's but think they just show T4. I will see what this one says, then my GP is a sweetie and might be able to get a much broader test done if this one isn't good enough. Thanks for all the help!

[SeasideSusie Remembering in reply to legsgran]

I already take Vitamin D by prescription, so know that is ok.

Is your GP checking your levels?

What is it currently?

The level recommended by the Vit D Council is 125nmol/L and the Vit D Society recommends 100-150nmol/L.

How much D3 are you taking on prescription?

Are you taking D3's important cofactors - magnesium and Vit K2-MK7 (doctors don't get taught much, if anything, about nutrition and generally have no knowledge of these important cofactors).

[legsgran in reply to SeasideSusie]

I had a liver transplant, I take Colecaciferol 2000 weekly.

[SeasideSusie Remembering in reply to legsgran]

But is your GP regularly testing your level? When taking D3 it's important to check our level twice a year, most doctors refuse to retest.

What is your current level?

Are you taking D3's important cofactors as mentioned?

I have a pretty good D3 level - last tested it was 126nmol/L (I originally had severe deficiency with 15nmol/L) but I prefer it nearer 150nmol/L. I need 5,000iu D3 daily, all year round, to maintain my level.

[legsgran in reply to SeasideSusie]

my D level was ' good' when last tested by my liver consultant in January, but don't know the exact level.

[SeasideSusie Remembering in reply to legsgran]

my D level was ' good' when last tested by my liver consultant in January, but don't know the exact level.

Always ask for the result, never accept "good", "fine", "OK", "normal". Better still, ask for a print out of your results for every test, you are legally entitled to them.

A Vit D level of 51nmol/L would be in the "sufficient" category yet it's way below the level recommended by the Vit D Council/Vit D Society.

[legsgran in reply to SeasideSusie]

I also take magnesium as a supplement. I think my Vit B levels were ok when last done by endericonologist some time ago, but my GP might check if I ask. I also take Multi Vit B supplement anyway.

[SeasideSusie Remembering in reply to legsgran]

Magnesium helps the body to use D3, it converts it to it's usable form.

However, it's also important to take Vit K2-MK7 because D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

Also, magnesium supplements should be taken 4 hours away from thyroid meds.

If you let us have your current thyroid test results, as mentioned, we may be able to help you change over to NDT but we also need to see current ferritin test result too.

[legsgran in reply to SeasideSusie]

how can I get Vit K? Have often wondered. Yes, I would also like to see my ferritin levels. I will ask, but won't be for a couple of weeks as I am moving house! I will see what the Thyroid test says, then if there is some ambiguity, I will go to my GP and get tests for B, D and ferritin, plus another thyroid test including T3. He's a good guy, and hopefully will help. I get a quite substantial broad bloods done when I go to my liver transplant consultant, but that is only every 6 months now. He also is helpful.

[SeasideSusie Remembering in reply to legsgran]

how can I get Vit K

Vit K2-MK7, easily available from online suppliers. It's a fat soluble vitamin so needs to be taken with dietary fat to be absorbed. You may wish to check this out with your doctors due to your liver transplant and any medications that you take. Note that this is K2 and not K1 which doctors often confuse. K1 is the blood clotting form of Vit K, K2 directs calcium to bones and teeth and away from arteries and soft tissues.

[legsgran in reply to SeasideSusie]

Thats very helpful, thanks. I always check with my liver doc when I take supplements. I didn't know you could get it online, it's a supplement that is often mentioned with liver problems also. (Although my 'new' liver is actually functioning well right now, 10 years down the line). Very grateful for the informed info on this site and people's help. xx

[SeasideSusie Remembering in reply to legsgran]

When you've checked it out with your doctors, before buying any you are welcome to come back and ask for suggestions or to check out any that you are interested in. It's better to get an oil based one so that it already has some fat to aid absorption.

[pennyannie]

Hello Legsgran

It would be a good idea to get a full thyroid blood test first so we can see ' where you are ' with regards to your T3 and T4 levels now and more importantly to check that your vitamins and minerals are all optimal as no thyroid hormone works effectively if your ferritin, folate, B12 and vitamin D are not at good levels in the ranges.

It reads that your doctor may not help you with these tests and if that is the case there are private companies as detailed on the Thyroid uk website. One company currently has the Thyroid UltraVit on ' offer ' and if you wish, you can arrange for a nurse to take the blood at your home.

Once with the results start another post with the results and ranges and people better able than myself will talk you through the first steps back to better health.

[humanbean]

I already take Vitamin D by prescription, so know that is ok.

Sorry, but that cannot be guaranteed. Doctors will often prescribe piddly little doses that leave people very deficient. What product are you taking and what dose does it contain?

[legsgran in reply to humanbean]

2000 mg of Colecaciferol weekly

[humanbean in reply to legsgran]

I always have to convert vitamin D doses into iU before I can grasp what the dose actually is.

Cholecalciferol or colecalciferol is another name for vitamin D3.

1 IU is the biological equivalent of 0.025 mcg cholecalciferol

If your dose is 2000mcg (not mg) of vitamin D3 per week then your dose is equivalent 2000 divided by 0.025 which equals 80,000 iU, and this is a very good dose, so you are unlikely to be deficient.

It is very unlikely that your dose is 2000mg per week. This would be 1000 times 80,000iU per week.

If your dose is 2000 iU per week this is what I would describe as a piddly dose that won't change anything.

...

Vitamin D raises the amount of calcium absorbed from the diet. If you are taking 2000mcg per week I hope that your calcium level is tested regularly. Over the range calcium levels are not good for anyone, whether it is caused by supplementation or any other problem. Excess calcium can cause bones and teeth to be brittle, and it can end up being deposited in the arteries and organs where it causes lots of problems.

[legsgran in reply to humanbean]

As I said, my immunosuppressant drugs leach calcium from my bones/body, which is why they give me the Vit D. I have just looked at my prescription, and each tablet is 25,000 units (iu?) which I take one weekly.

[humanbean in reply to legsgran]

iU stands for International Units. It is just another unit of measurement used for some purposes, often related to various nutrients. How the conversion is done depends on what is being measured.

thecalculatorsite.com/artic...

I used the above link to get the conversion factor.

[legsgran in reply to humanbean]

They do take Vit D deficiency quite seriously in liver transplant and get checked quite often, as the immunosuppressant drugs I take can leach calcium.

[humanbean in reply to legsgran]

I think it would have been a good idea to have mentioned that you've had a liver transplant in your original post. It's made me a bit twitchy about suggesting anything. Nobody on the forum is likely to know the repercussions of supplementing anything on someone with your health problems.

So, it would be a good idea for you to double and triple and quadruple check anything that anyone says to you regarding thyroid and nutrients.

Was hospitalised 2 years ago and given massive doses of Prednisone (steroid). Every since getting of the Prednisone I have had terrible symptoms, fatigue, fibromyalgia, tinnitus, my eyebrows fell out (!) etc.

I think prednisone has the same effects on the body as cortisol - they are both glucocorticoids.

en.wikipedia.org/wiki/Gluco...

There is a strong relationship between the adrenal glands (which produce cortisol and other hormones) and the thyroid gland. There is something called the HPA axis and the HPT axis which affects that relationship.

en.wikipedia.org/wiki/Hypot...

en.wikipedia.org/wiki/Hypot...

If one part of the HPA axis is disturbed - by, for example, taking a cortisol substitute like prednisone - then it can affect everything else involved in the HPA axis and the HPT axis, and that includes the thyroid.

This is one of those occasions when a good history of your thyroid, nutrient and adrenal results would help. If you felt well on dose X of Levo and had results A and B and C then when trying to fix the problems you currently have you would know what you were trying to aim for. Unfortunately, people having a good history of thyroid, nutrient and adrenal test results from before they were ill and who also had all the right things tested (e.g. not just TSH for example) is vanishingly rare.

So, all I can really suggest is that you need to get hold of as many of your test results from the last few years as possible - I'm specifically referring to thyroid function tests, nutrient results, full blood counts, and adrenal results i.e. cortisol for example.

You can research your own results with the help of websites like this one :

labtestsonline.org.uk/

Just enter the test name and on the pages that come up click on all the + signs to expand the info provided.

[legsgran in reply to humanbean]

Yes, I understand my complex history, which is why I am attempting to do this sensibly. And yes, I do know the effect of Prednisolone (which is a lethal steroid) on the HPA axis and my adrenals. I have visited an endrinconologist and have spoken at some length to doctors about this, but as you know, most of them are utterly clueless about hormones. I have done the detective work through reading a lot of medical abstracts, and have concluded that it is most likely that my thyroid function is not optimum (as my Mum had terrible thyroid problems all her life) so this is my latest try to sort myself out. Some of the latest findings suggest fibromyalgia could be thyroid related, and in addition to the other very random symptoms which I currently have (bad gastro problems, massive fatigue, loss of hair on eyebrows, tinnitus, severe muscle aches) it seems a likely culprit. Specially as they all arose when I quit the Prednisone 18 months ago. We shall see! (BTW, I had the transplant 10 years ago.)

[humanbean in reply to legsgran]

Some of the latest findings suggest fibromyalgia could be thyroid related

There are some members on here who have been diagnosed with fibromyalgia and/or CFS/ME. Some have discovered that their symptoms have abated a lot just by optimising their nutrient levels. Once they start improving their thyroid hormone levels too it helps even more.

I'm not sure if anyone has ever claimed they have completely eliminated their fibromyalgia or CFS or ME by supplementing and/or treating their thyroid in a particular way. Unfortunately once people get well many of them tend to stop posting and we don't hear from them again unless things go wrong again.

Specially as they all arose when I quit the Prednisone 18 months ago.

I hope you were weaned off prednisone slowly. Going cold turkey would have been a massive shock to the system.

bad gastro problems

These are incredibly common in people with thyroid problems. Hypothyroidism often reduces the production of stomach acid. It is worth reading up on GERD (gastro-esophageal reflux disease) because understanding the biological processes behind how it starts makes it easier to work out how to help ourselves. It is true, however, that some people can never do more than tinker round the edges of the problem because they need to take drugs which affect the gut.

[As an example, I take Naproxen, an NSAID, for chronic pain. I have to take meds which reduce my already low stomach acid to practically zero because without it I am likely to develop stomach ulcers as a result of the Naproxen. I got my first stomach ulcer in my 20s, and my gut has never been healthy.]

For info on stomach acid and gastro problems this series of articles is excellent, even though it doesn't specifically relate it to the thyroid :

chriskresser.com/what-every...

chriskresser.com/the-hidden...

chriskresser.com/more-evide...

chriskresser.com/how-your-a...

chriskresser.com/how-your-a...

chriskresser.com/get-rid-of...

[legsgran in reply to humanbean]

thank you humanbean. It's so complicated, we end up having to be our own experts! As to stomach acid, I had my gall bladder taken out when I had my transplant, but it didn't affect me at all for 10 years, but every since i had the Prednisone, I have had stomach and bile issues. If we all share what we know we can at least help each other. I know I have learned more from forums than I have ever got from Doctors! It has saved my life in one case. I really like the responsible way this forum operates, making sure tests are taken and no wild theories and promises!

[legsgran in reply to humanbean]

and yes, I did wean my self off slowly. It was murder - I went from intravenous 1000mg doses, to 20mg tablets and it took me over a year to wean off. Steroids are amazing, they are very effective, but talk about a sledgehammer to crack a nut - docs give far too high doses, and as long as it has done the trick, they simply don't care about the fall out from side effects. It's terrible for the HP axis and loads of other things.

[SlowDragon Administrator]

As levothyroxine (Ft4) is converted into Ft3 in the liver you may have poor conversion

But FIRST step is to get all four vitamins tested and OPTIMAL levels

[legsgran in reply to SlowDragon]

Yes, will try to get vitamin levels tested, or the results where they have been. Actually my 'new' liver is working very well, I suspect the problem is the genetic problem with F3, as my Mum had lifelong problems with her thyroid and my son, who is 47, also has thyroid issues, and is putting on weight and has fatigue. We all were/are on Levothyroxine, but frankly for all of us it does not seem to make much difference, however much they tinker with the dosage. I gather there is a test for the gene thing?

[SlowDragon Administrator in reply to legsgran]

Yes

Poor vitamin levels is widespread on levothyroxine and always need testing and improving as first step

DIO2 gene variation affects about 10-20% of thyroid patients

thyroiduk.org/tuk/testing/D...

Other DNA issues can be haemochromatosis (too much iron rather than too little

stopthethyroidmadness.com/h...

MTHFR also common. Can cause high iron and/or low B vitamins