How and what do you need to start to manage your own health ?

[Yogibo]

So I have been struggling on a prescription of thyroxin for the last 20 year, I’ve joined this site in the hope that it will learn more to help myself .... so my I think my question would be where should I start on my journey , I think I need to start with a blood test to see what I need to start my knowledge and development ... what blood test do I need to get to establish my start position ? Where do you go for these blood test ? Thank you in anticipation

[SeasideSusie Remembering]

Welcome to the forum Yogibo

To get a full picture we need a full thyroid and vitamin panel to include

TSH

FT4

FT3

Thyroid antibodies

The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well.

The thyroid tests will tell us if we are optimally medicated. They will also tell us whether we convert well enough the pro-hormone T4 into the active hormone T3 which every cell in our bodies need.

The antibodies will indicate whether we have autoimmune thyroid disease (Hashimoto's).

Vit D

B12

Folate

Ferritin

Because we need optimal nutrient levels for thyroid hormone to work properly, it's essential we also test these. Low levels/deficiencies can cause their own symptoms, some of which overlap with symptoms of hypothyroidism.

Most GP surgeries can't include all the tests we need, so hundreds of us here use private labs recommended by ThyroidUK, and the full thyroid/vitamin panel can be purchased as one test bundle which can be done either by fingerprick or venous blood draw at extra cost.

Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code THYROIDUK for a 10% discount on any test not on special offer

or

Blue Horizon Thyroid Check PLUS ELEVEN bluehorizonmedicals.co.uk/t...

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 Serum B12. Medichecks does Active B12.

Serum 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 Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

When doing thyroid tests, we advise to do the following evey time and that way results can be compared accurately:

* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.

* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it will give false results (Medichecks definitely use Biotin, they have confirmed this and the amount of time to leave the supplement off).

These are patient to patient tips which we don't discuss with doctors or phlebotomists.

Some people find fingerprick tests easy to do, others struggle. If doing a fingerprick test, here are some tips:

* Be well hydrated, drink plenty of water the day before, and before you do the test.

* Some people take a shower before hand, some run up and down the stairs to get blood flowing. Personally, as I can't run up and down the stairs, I circle my arm round, windmill style.

* Have a bowl full of hot water, dip hand in and out, swish around, hand needs to go red. If blood flow stops, you can always swish round in the hot water again.

* Stand up to do the test. Make sure your arm is straight down when collecting the blood. Either use a small step stool to raise yourself well above the work surface, or put the collection tube on a lowish shelf. One member uses an ironing board so she can get the perfect height.

* Prick finger on the side, not the tip. I find that half way between the nail bed and tip is about right, or maybe slightly nearer the nail bed rather than the tip. I use my ring finger, but middle finger is next best for me.

* Do not squeeze your finger to get the blood out, it can damage the blood and it may not be usable.

I've recently done 2 tests. The first one there was very little blood coming out which was unusual for me so I used a second finger and between the two I gradually filled the tube. However, when I checked the prick site for the first finger the actual cut was very small and as I've had some of these lancets fail before I put it down to that. When I did the second test this is what I did

* Prick my finger as usual, make a very slight twist with the lancet whilst blade is still in the finger. I'm not talking 90 degrees or anything, just a very slight twist to make the cut just slightly bigger, it doesn't hurt or cause a blood bath! This made a big difference, 11 generous drops of blood filled the tube in less 2 minutes.

Post your results, with reference ranges, on the forum and members will comment.

[Yogibo in reply to SeasideSusie]

Wow thank you for taking time to respond I appreciate your guidance immensely... I’ll go do this and share what come back ... thanks again for such a awesome a complete response ❣️

[DIYqueen in reply to Yogibo]

I like seaside susie's tip about twisting the lancet slightly! Hadn't thought of that. I did run up and down stairs etc but still ran out on middle and ring finger - but medichecks sent me 4 lancets. (just remember the step of cleaning with antiseptic wipe each time and wiping first tiny bit with the sterile saline wipe).

Then I went to little finger, filled tube then couldn't stop it dripping lol. That's my 'go to' now. So if first finger doesn't produce enough don't worry, just keep working across fingers until tube(s) filled.

[SilverAvocado in reply to DIYqueen]

I feel like this is one of those sod's law things... You can suffer for ages to fill the tubes, but once they're full and sealed up the blood will start flowing!

[Yogibo in reply to DIYqueen]

Thank you for the guidance .... I’ll follow and be back

[Yogibo in reply to DIYqueen]

Thank you for your advice I will follow it

[Yogibo in reply to SeasideSusie]

Seaside Susie I appreciate there’s rules so I’m not sure how to ask this as don’t want to put either of in a precarious position .... but out of these 2 blood service is there a preference ( personally experience) or basically they are same ... not sure which one I should choose and wondered if you might be able from a personal perspective share with me privately ??? Sorry if I’ve crossed any ethical boundaries .. I’m new and learning 🥴

[Yogibo in reply to Yogibo]

Don’t worry I think I’m going to choose to use Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... because of the 10% discount....😂

[SeasideSusie Remembering in reply to Yogibo]

Yogibo

Don't worry, you can ask and members can give personal opinion.

What I tend to do is for basic thyroid monitoring purposes or any test that requires 1 x microtainer for the fingerprick test I use Medichecks, they tend to be cheaper.

However, if I want to do the full thyroid/vitamin panel (I do it once a year), then Medichecks require 2 x microtainers which I struggle with. Blue Horizon only requires 1 x microtainer for the full test so I use them.

The only other differences are what I mentioned above, and out of the B12 tests then the Active B12 is the better test.

I haven't found any difference is service or quality and they both use accredited labs.

[Hidden]

the aip diet made a massive difference for me 😊

[Yogibo in reply to Hidden]

What the aip diet ?

[Hidden in reply to Yogibo]

The autoimmune protocol, it cuts out all inflammatory foods so your body can heal, you then re introduce them slowly to see what you do or don't react to

[Yogibo in reply to Hidden]

Thank you I’ll go do some research assuming it’s on the net .... happy to try anything that’ll potentially Help

[Hidden in reply to Yogibo]

yes its all on the net, there has been a recent medical study to prove it works for thyroid patients, it made a massive difference to my life. Hope you find what you are looking for and start to feel well soon 😊

[JumpJiving in reply to Hidden]

Could you share a link or reference to that medical study please? Whilst I've been lactose-free for years, and most meals are vegan, AIP feels a big step.

[Hidden in reply to JumpJiving]

I tried to copy and paste the link to the study but unfortunately it wont work, if you google aip hashimotos study its the first thing that comes up. It made such a difference to me. I was in bed every weekend for months, and couldn't walk to get a drink or do the simpliest thing at some points, and i went to being able to go walks and yoga class. I think instead of focusing on what you cant eat focus on how many nutrients you are getting from all the new food you are eating. Good luck 😊

[DIYqueen in reply to Yogibo]

I have also found a lot of helpful info on AIP on a facebook group Hashimotos 411. They have specific teaching units and members share/give links to good recipes.

[SilverAvocado]

Yogibo, I'd say the first steps are to look at your thyroid panel blood tests. Learn how to interpret it by posting in the forum, but also sticking around and reading lots of other people's results, and the other info shared by members.

You may have a battle on your hands with doctors to adjust your dose if necessary. Unless you've had a very good doctor looking out for you it will almost certainly need some tweaking. And hopefully you'll get an improvement in symptoms straight away.

At the same time look at the vitamins SeasideSusie recommends. Bqeing hypothyroid trashes our vitamin levels so you may have some deficient or low results. If they're under range your doctor may help, but probably you'll be on the Internet buying supplements and trying to raise levels. Again, finding deficiencies can be good news because it means you can work on them and get symptom improvement quite quickly.

Then the next level priority things to try are less clear cut. If you have Hashimoto's auto immune thyroid disease (this might be confirmed by the finger prick test if you don't know already) trying gluten free is a must, and dairy free might also help. If you adjust your dose and find that you need T3 getting that is the next priority. This might mean persuading doctors or you may end up sourcing your own.

The priority level after that is really the sky's the limit. There are many other things to try. Some say testing for adrenal fatigue with the 24hr saliva test should be done, there are more obscure vitamin tests to look into, there are stricter diets such as the auto-immune protocol, lifestyle changes like meditating. All things to think about only once you've done the basics, I think.

Continue to read the forum and these things will slowly come together. When I first started I could hardly concentrate and it was all a blur, but I came back to it every day and read a little bit and slowly it started to sink in. If you're good at reading journal articles and book recommendations come up often, too.

[Homer48 in reply to SilverAvocado]

Just a tip from personal experience I done an adrenal saliva one,and GP says Endo poo pooed it(more likely looking for an easy appt with no investigating with me tho!).

[SilverAvocado in reply to Homer48]

Homer48, unfortunately 24hr saliva cortisol test and adrenal fatigue in general is not acknowledged by the NHS, so we are completely on our own treating those.

This is true of most of what I've listed. If you're lucky a doctor will allow a hormone dose to be adjusted to good looking levels, but many people have to fight with doctors because eg good levels produce a suppressed TSH. Many of us are buying our own because doctors just won't prescribe or won't oversee proper dosing of thyroid hormone.

With vitamins, again doctors may help a little, but if you have serious deficiencies they will only take levels into the low range, they won't help us supplement up to optimal levels.

Below that on my list help from doctors is almost non-existent. There are patchy things you may get help with, but overall we are on our own to investigate and treat thyroid.

[Homer48 in reply to SilverAvocado]

Wish I could literally fight drs to get result-would be easier! LOL

[SilverAvocado in reply to Homer48]

Ha ha! That's a good mental image!

[Homer48 in reply to SilverAvocado]

Have thought that when drs are at ESA/PIP assessments,or tribunals-it stopped me going to last PIP tribunal!

[Yogibo]

I will go and get a panel of bloods and then share to see what I need to do if anything . Thank you so much as I feel

Like I can actually do something now and you guys are awesome.