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Veejay17 profile image

H

This is my first time to post and was after bit of advice as little confused

Last September was diagnosed with thyroditis. Was put on Levo and recently started feeling unwell, hot sweating out of puff, joint pain, insomnia etc I had some blood tests done which came back that I was anemic but not due to iron def. gp wrote to heamatology and had more tests on Thursday. Had call to say now hyperthyroidism and to stop medication with immediate affect, he is contacting specialist and will contact me. Would anyone be able to advise if likely to be put on medication to get levels down. I have always been a very cold person and finding it very hard to cope with the heat side of things and having funny turns when getting out of breath but not sure if then having panic attacks. Thanks

These are my results

Plasma free t3 range 2.6 -5.7

July - 15 abnormal

Plasma tsh level range 0.30 - 4.20

July 0.01 abnormal

Nov 0.11 abnormal

Sep 0.23 abnormal

Aug 0.36 normal

Plasma free t4 level range 9-19

July 31.5 abnormal

Nov 14.1 normal

Sept 14.7 normal

23 Replies

Pretty sure those results are indicating Hashi's - Hashimoto' thyroiditis. Have you had any antibodies tested? If not, insist on having them done before taking anti-thyroid medication. That is a treatment for Grave's, not Hashi's. You need:

TPO and Tg antibodies for Hashi's - or, as it is know in the NHS, Autoimmune Thyroiditis

TRAB or TSI for Grave's

As you have stopped taking your levo, the levels will come down, and eventually, you will go back to being hypo. That's the way Hashi's works.

With Grave's, the thyroid is in over-drive, producing far too much thyroid hormone - more than you have in any of those results. With Hashi's, the levels rise due to the dying thyroid cells dumping their store of hormone into the blood. Not the same thing at all. Unfortunately, very few doctors know the difference. So, you have to be strict. :)

Veejay17 profile image
Veejay17 in reply to greygoose

Hi Greygooose

Thanks for your response

Just found couple of other results from last year

Tsh receptor antibody level

Range 0.4

Result 0.4

Thryoid peroxidase antibody level

Range 50

Result 90 abnormal

Doc should be phoning this week as awaiting fbc results and blood film as had high platelets and low red

greygoose profile image
greygoose in reply to Veejay17

Thryoid peroxidase antibody level

Range 50

Result 90 abnormal

Those antibody results say you have Hashi's, which is what I thought.

The Grave's antibody results are inconclusive. So, before taking anti-thyroid drugs, insist they test them again.

Veejay17 profile image
Veejay17 in reply to greygoose

Thanks again for responding, doc called and having bloods in few weeks

greygoose profile image
greygoose in reply to Veejay17

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator

None of these results show you were hypothyroid ....TSH was always extremely low

When hypothyroid TSH is high and Ft4 and Ft3 low

These results all show very low TSH

Do you have any other results?

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Low vitamin levels also common if have Graves’ disease (hyperthyroid)

TPO antibodies result isn’t very high so could be Hashimoto’s or Graves

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin (doesn’t include folate)

medichecks.com/products/thy...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Medichecks JUST vitamin testing via DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Veejay17 profile image
Veejay17 in reply to SlowDragon

Had vitamins done, they all fine, was vit d Def but that is all good and at good level and rising

SlowDragon profile image
SlowDragonAdministrator in reply to Veejay17

Fine or optimal

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate at least half way through range

Serum B12 at least over 500

Ferritin at least half way through range

Veejay17 profile image
Veejay17 in reply to SlowDragon

more than fine but not yet optimal, will be getting sorted without fail 😄

SlowDragon profile image
SlowDragonAdministrator in reply to Veejay17

Why, when TSH was abnormally low, and Ft4 at normal levels , were you prescribed levothyroxine?

Seems odd

Veejay17 profile image
Veejay17 in reply to SlowDragon

I have no idea the whole thing confuses me. I’ve tried to educate by reading but I just do not understand I’m afraid.

SlowDragon profile image
SlowDragonAdministrator in reply to Veejay17

SeasideSusie

greygoose

Can you look at this

Can you explain why levothyroxine prescribed?

SeasideSusie profile image
SeasideSusieAdministrator in reply to SlowDragon

I'm puzzled. When thyroiditis was diagnosed in September FT4 was normal at 57% through range. No reason to start Levo.

Obviously latest July results look. Like a hyper phase of Hashi's.

greygoose profile image
greygoose in reply to SlowDragon

Pressumably because of the antibodies.

Veejay, can you tell us what your blood test results were when you were diagnosed? Are they the September results above?

TSH 0.23 (0.3-4.20)

FT4 14.7 (9-19)

Did you ever have any results with a high TSH and low FT4?

Veejay17 profile image
Veejay17 in reply to greygoose

Yes would have been September, I started on 50mg then upped to 75mg that’s all results I have above.

Veejay17 profile image
Veejay17 in reply to SlowDragon

Have I been given wrong medication, all I know is that I was diagnosed with thyroditis. I was very unwell, cold, tired like never felt before and other bits. I improved once started the meds only just recently in last month that so hot, sweating, got shakes, insomnia, had few funny turns as out of breath and possibly had panic attack on top

greygoose profile image
greygoose in reply to Veejay17

No, you weren't given the wrong medication. It's just that SlowDragon doubted you needed medication at all. But, your symptoms do sound hypo. And, if the levo made you feel better, then that's the main thing.

The reason you started to feel unwell recently, are these results here:

free t3 15 (2.6 -5.7)

free t4 31.5 (9-19)

And, these result are why they're now saying you're hyper, because they don't understand how Hashi's works. But, you had a Hashi's 'hyper' swing. Which is perfectly normal. And just needs you to stop taking the levo for a while. The levels will come down by themselves and you will start to feel hypo again. Here's a brief run-down of how Hashi's works:

OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.

Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:

"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.

The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."

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

After every immune system attack on the thyroid, 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 try 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 were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.

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 of 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, which 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.

greygoose profile image
greygoose in reply to greygoose

Apologies for the lack of spacing. Gremins are at work on HU tonight!

Veejay17 profile image
Veejay17 in reply to greygoose

Morning Greygoose, cheers for this explanation, I really appreciate it and it’s understandable

greygoose profile image
greygoose in reply to Veejay17

You're welcome. :)

Veejay17 profile image
Veejay17 in reply to SlowDragon

Sorry forgot to mention also had swollen neck which now looks pretty good

greygoose profile image
greygoose in reply to Veejay17

Yes, that's the thyroiditis part, which just means: swollen thyroid. Glad to hear it's gone down. :)

Hi, following my post I have had private test and came back with following antibodies

Thyroglobulin antibodies 2329 range <115

Thyroid peroxide antibodies 275 range <34

Tsh 0.005 range 0.27 -4.2

Free t3 21.6 range 3.1-6.8

Free thyroxine 58.7 range 12. - 22

Been very sweaty but weather has had influence on this I’m sure

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