Desperate for Initial help diagnosis: Evening all... - Thyroid UK

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Desperate for Initial help diagnosis

Amberskys1 profile image
5 Replies

Evening all,

TIA for reading my post

I'm 29,been unwell struggling greatly (can feel like I'm 100) since I was around 12. Main symptoms are extreme varying fatigue where I can not work as I can need 2 naps a day generally just to cook dinner in an evening, general malaise, weakness, muscle/joint pains, brain fog amongst others I struggle to think.

Private B. T end2018

TSH 3.26 0.27-4.2

Ft4 18.7 12-22

Ft3 5.91 3.1-6.8

Thyroglobulin antibody 262 0-115

Thyroid peroxidase antibodies 56 0-34

B12 (supplementing) 172 37-188

Serum folate 9 3.89-26

Ferritin 17.6 13-150

Vitamin D was very low sorry can't find results so I was sent for bone density scan.. All ok but I'm taking liquid Vit D with k2 now quite high doses.

More recent NHS only did TSH and T4

Results jan 2020

TSH 3.4 0.3-5.5

T4 17 10-22

Consultant said to have another blood test in few months and may try levo... (Oh dear)

I've had endoscopy for coeliac because of my low Vit D and no conclusive for my ongoing symptoms. But came back inconclusive so I'm staying gluten free and now dairy free and feel a teeny bit better. I've read multiple books on thyroid and do so much research to try find how to make me better. I have two girls I want to be able to do more for. I hate feeling so awful.

What would happen if I went and got my own NDT like amour to try? If I have no thyroid issues would that made me Ill?

I'm so desperate, any advice very very welcome. I've spent lots on supplements ect.

I hope you're all doing well and thanks so much for reading my post ❤

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Amberskys1
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5 Replies
Jazzw profile image
Jazzw

Your ferritin level is very low. Yes, it’s in range but many people would have the symptoms you’ve described with the levels that low.

Has your doctor done a full iron panel? Ferritin is just one of the clues to iron status so a few more tests need to be done to see what’s going on. You may have iron deficiency anaemia. But don’t start taking iron tablets until you’ve found out for sure.

Jazzw profile image
Jazzw

Oh, and I understand how desperate you are to try something like NDT. Been there myself. But it’s too early to try that—go and ask about anaemia first.

NDT is getting horrifically expensive and if you have to source it yourself you live with the constant fear that you might not be able to get your hands on it/afford it.

Plus levothyroxine works for most people, once prescribed. Not all, but most.

humanbean profile image
humanbean

Ferritin 17.6 13-150

I agree with Jazzw . Your ferritin (iron stores) are much too low for you to have a hope of feeling well. You might even be anaemic. (People can be iron deficient with or without anaemia - but it needs fixing in either case.) You really need to find out how bad your iron is, and this can be done with a full iron panel. Your doctor might do one for you, but if not...

You can do your own finger-prick iron panel without involving a doctor if you are willing to pay :

medichecks.com/iron-tests/i...

And you can get 10% off the price permanently with the following discount code :

healthunlocked.com/thyroidu...

Sometimes there are higher discounts available. It is worth registering with Medichecks so that you receive emails about their special offers.

When you have the results of an iron panel you can post them in a new thread and ask for feedback on what they mean and what supplements you can take (if they are necessary).

Vitamin D was very low sorry can't find results so I was sent for bone density scan.. All ok but I'm taking liquid Vit D with k2 now quite high doses.

It would be nice if you could look again for your vitamin D results. You say your vitamin D dose is "quite high". I'm curious how much you are actually taking per day, and how much vitamin K2 you are taking. It would be nice to know which actual products you are taking. Please make sure you are taking vitamin D3 rather than vitamin D2.

People taking vitamin D also need to take magnesium to get the most benefit from the vitamin D. There are loads of posts on the subject of magnesium on the forum. Not all magnesium supplements are worth taking.

B12 (supplementing) 172 37-188

Serum folate 9 3.89-26

Your B12 looks good.

Your folate is too low though. In order to make the most of the B12 you have got the body needs good levels of folate. Ideally your level would be in the top half of the range, which is roughly 15 - 26 with the range you've given. For info on folate and good supplements to look for :

chriskresser.com/folate-vs-...

SlowDragon profile image
SlowDragonAdministrator

There’s almost 2 million people in the UK on levothyroxine, many manage fine on levothyroxine

It’s the easiest and by far the cheapest option to be take

Getting all four vitamins optimal is your first step

Ferritin is terrible at moment

Never supplement iron without doing full iron panel test for anaemia first

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

SarahJLD profile image
SarahJLD

You had raised antibodies in 2018 on the private blood test, is the endocrinologist aware of those results? If so why is he waiting for another blood test before starting medication?

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