elevated TPO, but normal TSH and T4

[Flashgirl]

Hi all. Am totally new to this board! Have been feeling shocking for a year or so; fatigued, brain fog etc. Was diagnosed with very low ferritin in August, and have been taking ferrous sulphate for 6 months but still feel terrible. Went to docs as developed thyroiditis two weeks ago - which is very painful (feels constant pressure on throat... and i feel like I'm going to be sick). Blood test shows ferritin levels are in range now but my TPO is positive (150.8 when range is 0.00-5.60). However TSH is normal and T4 is lower end of normal. I don't know what to do?! Any ideas? Still feel shocking and throat killing! Many thanks.

[greygoose]

First thing we have to get our heads around is that the terms 'normal' and 'in-range' are meaningless. 'Normal' just means 'in-range', and rarely has anything to do with 'normal' as most people interpret the word. And, just being 'in-range' is not necessarily good. The ranges are totally unrealistic, far too wide, so it's where in the range that the results fall that counts. Therefore, we always ask for numbers: results and ranges. Give us those, and we might be able to help you.

How much ferrous sulphate have you been taking?

Have you also had your vit D, vit B12 and folate tested? Because they could also be low, causing you to feel bad.

The high antibodies mean that you have Hashimoto's Thyroiditis - aka in the UK Autoimmune Thyroiditis. An autoimmune disease where the immune system slowly destroys the thyroid. Therefore, results have a tendency to jump around, and need to be kept an eye on with frequent testing (if possible). Unfortunately, symptoms often precede abnormal lab results, so doctors won't take action.

[Flashgirl in reply to greygoose]

Thanks so much for your speedy response greygoose. Makes sense to include all the numbers!! Thanks for agreeing to advise and to give me some ideas about ways forward.

Still feel grotty and throat killing! Feels like I've been punched in the adams apple!

I can try and upload my results, but have included some below. FYI I'm 46 years old.

August 2019:

Ferritin 8 (range 10.00-200.00)

Serum TSH 1.62mu/L (0.35-5.00mu/L) "Normal"

Serum free T4 11.7 pmol/L (9.00-22.0pmol/L) "Normal"

Prescribed 2 x 200g ferrous sulphates a day. Taking as directed.

Nov 2019:

Vit D was "Normal" (don't have number)

Ferritin 28 (range 10.00-200.00) "Normal"

B12 was 840 ng/L (range 200-910) I take a B12 supplement "Normal"

Continue to take 2 x 200g ferrous sulphates a day as directed.

Jan 2020

Went back to docs as still feeling tired and very run down, achey, brain fog etc... Whilst waiting for my appt I developed thyroiditis.

Blood test:

Se thyroid peroxidase Ab conc (SM) 150.8 ku/L (0.00-5.60ku/L) "Positive"

Serum TSH 1.75mu/L (0.35-5.00mu/L) "Normal" (increased from Aug 2019)

Serum free T4 9.7 pmol/L (9.00-22.0pmol/L) "Normal" (decreased from Aug 2019)

Ferritin 50 (range 10.00-200.00) "Normal"

[Sybilla14 in reply to Flashgirl]

It looks like you may have a similar problem to mine where the tsh did not rise relative to the low end of ft4/ft3. One thing I’d recommend is to repeat the tests privately by using a kit and have ft3 measured as well. If ft3 is low as well as ft4 you can try working on your gp and showing evidence that tsh levels may be artificially low in your case (pituitary problem, interference of other hormone imbalances etc.) and push for a trial. Tsh in the range is a challenge to a diagnosis but following shaw’s recommendations will help you catch it at its highest.

[Flashgirl in reply to Sybilla14]

Thanks so much! Great advice. Think thats the way forward.

[Sybilla14 in reply to Flashgirl]

I also find raising and maintaining ferritin and vit d levels a bit of a challenge and take them permanently with annual tests. Your b12 looks good but are you taking it as methylcobalamin?

[Flashgirl in reply to Sybilla14]

haven't a clue?! will investigate!

[Flashgirl in reply to Sybilla14]

yes I am... is that ok? (better you spray)

[Sybilla14 in reply to Flashgirl]

Yes that’s the better one to take. I think cyanocobalanin is harder to convert into the active form but sounds like you’re good and unlikely low b12 contributes to feeling unwell. 🙂

[Flashgirl in reply to Sybilla14]

will keep on the ferrous sulphate to keep raising the levels, although my digestion is all over the place feel like i will be on that forever. have felt tired for years, but put it down to a young(wish) family and busy job!

[greygoose in reply to Flashgirl]

Your ferritin is now in-range, but still far from 'normal'. Should be around 100. As your ferritin was under-range to begin with, your doctor should have done a full iron panel to find out more.

Your TSH is in range, but abnormally low compered to your FT4. With an FT4 that low, one would expect the TSH to be a lot higher. However, GPs know very little about thyroid, so instead of looking at the actual thyroid hormone - FT4 - your doctor is only looking at the TSH, which is a pituitary hormone.

If your FT4 is that low, it could be that your FT3 - the active hormone - is even lower. It might be a good idea to get private testing done to get the FT3 result. If your FT3 is as low as I suspect, that is what is causing your symptoms. Although the still-low ferritin is not helping. So, I think that should be your next step.

[Flashgirl in reply to greygoose]

Thanks. This board is fab!!! I've been going around in circles the last few days!

[Flashgirl in reply to greygoose]

ps... do you think knowing my extra results that its hashimotos? thanks!

[greygoose in reply to Flashgirl]

Oh yes, quite definitely Hashi's.

[Flashgirl in reply to greygoose]

Arghhh... Something to get my head around!

[greygoose in reply to Flashgirl]

Have you read up about it?

[Flashgirl in reply to greygoose]

No I haven't as only found out yesterday, and the doc hasn't confirmed it is! but the thyroid hurting is absolutely horrid. i feel like i'm being strangled. she has reluctantly prescribed me two weeks of levothyroxine 25mcg. would this be right?? any books you can recommend. many thanks in advance. if i go quiet its cos i'm doing bed time!!! not for me

[greygoose in reply to Flashgirl]

No, that would not be right. 25 mcg for two weeks? What does she think that's going to do? Thyroid hormone replacement is for life. And the starter dose at your age is 50 mcg. Another doctor that has no idea what she's doing!

I've never heard of anyone having such bad throat pain with Hashi's, so I don't really know if that is connected. Is your thyroid swollen?

Anyway, here is a brief run-down of Hashi's to get you started:

OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid.

After every attack, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.

There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.

(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)

Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.

There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!

However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.

But, there are things the patient can do for him/herself to help them feel a bit better.

a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you get rid of the antibodies, you will still have Hashi's, because the antibodies are not the disease.

b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.

c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified by a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, but it also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.

With your elevated level of antibodies, there is no doubt that you have Hashi's, but maybe your doctor calls it Autoimmune Thyroiditis?

[Flashgirl in reply to greygoose]

Yes she did!Ive looked up sore thyroid and have seen subacute thyroiditis (?) I'm having an ultrasound soon (waiting for NHS) on the thyroid to check it out. I think am going to try and see an endocrinologist to try and get to the bottom of this, as many gps as you say are general! Thanks for the info... need to digest. Really helpful

[greygoose in reply to Flashgirl]

I don't want to worry you, but it's very doubtful that an endo would be able to get to the bottom of it. Also the title 'endocrinologist' suggests that they know all about the endocrine system and all the hormones, in actual fact, they don't. The vast majority of them only know about diabetes and have little or no knowledge of thyroid. So, if you want to see an endo, chose one wisely.

Email [e-mail] and ask Dionne for the list of hypo-friendly doctors that she has. And, when you've picked one that suits you, distance wise, ask on here for feed-back (PM only). Otherwise, you might be bitterly disappointed.

[Flashgirl in reply to greygoose]

Good tip. I will do. Thanks for your advice.

[greygoose in reply to Flashgirl]

You're welcome.

[london81 in reply to Flashgirl]

my first sign of hashis ( apart from tiredness ) was sore throat. ended up in walk in, in 2015, they said laringytis, it was actually hashimotos. feel free to look at my profile on here and the excellent answers i’ve had over the last 4-5 years from the admins/members. good luck, there is hope xx

[Flashgirl in reply to london81]

Thanks London. Will do for sure. Great!

[shaws Administrator in reply to london81]

I went straight to A&E because I felt so very unwell. They kept me in overnight running on treadmill etc. They stated upon my discharge, it was 'probably viral with a high cholesterol'. The fact that they didn't test the TSH which I did on the Monday a.m. TSH was 100.

I'd think they should always check the TSH when females (in particular) go to the A&E with a vague symptoms.

[shaws Administrator]

Welcome aboard and members will respond. The fact that you have thyroid antibodies means you have an Autoimmune Thyroid Disease, commonly called Hashimotos. You should be prescribed levothyroxine on the antibodies alone.

thyroiduk.org.uk/tuk/about_the_thyroid/thyroid_antibodies.html

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

These are some tips to get the best results from a blood test for thyroid hormones:-

The earliest blood draw, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take it afterwards.

A 'Full Thyroid Blood Test' consists of but not all are tested:

TSH, T4, T3, Free T4, Free T3 and antibodies.

Always get a print-out of your results and ensure the ranges are also given. Ranges are within brackets. Post if you have any queries.

Also ask GP to check B12, Vit D, iron, ferritin and folate - everything has to be optimal.

[Flashgirl in reply to shaws]

Thanks so much for responding shaws. I have put some extra details above! Many thanks!!