Thyroid working on its own?

[Rosieann]

Hi all, I was diagnosed hypothyroid in 2012 with a TSH over 20 and a Free T4 10.7 (12 - 22) and my dose over the years has gradually gone up to 175mcg levothyroxine. However, I stopped my levothyroxine for 8 weeks so it would help settle my TSH which was jumping around a lot since and before diagnosis and by the looks of the things my thyroid seems to be producing hormone on its own!

At the time of the bloods I felt very out of breath walking uphill even though I am active throughout the day and I have been getting other symptoms like hard stool, periods heavy, puffy eyes, sleeping in the afternoon because of heavy periods, muscle aches and cramps, weight loss, brain fog and I find this all very confusing.

I am just not sure what is going on right now! I have been taking 50mcg levothyroxine increased from 25mcg 6 weeks ago and due a retest next week.

Advice appreciated x

TSH 4.29 (0.2 - 4.2 MIU/L)

FREE T4 17.5 (12.0 - 22.0 PMOL/L)

FREE T3 4.1 (3.1 - PMOL/L)

[SeasideSusie Remembering]

Rosieann

TSH which was jumping around a lot since and before diagnosis

My guess is that you have raised antibodies which means autoimmune thyroid disease aka Hashimoto's. Have you had thyroid antibodies tested - TPO and TG? If not you need them done.

You also need vitamins and minerals tested:

Vit D

B12

Folate

Ferritin

Those test results show undermedication, I expect you will need another increase when you've had your new test next week.

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 respective reference ranges when on Levo if that is where you feel well. So keep retesting/increasing Levo until your levels are where they need to be.

When booking thyroid tests, always book the very first appointment of the morning and fast overnight (water allowed) . This gives the highest possible TSH which is needed when looking for a diagnosis, an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. Also, take your Levo after the blood draw because if you take it before then your FT4 will reflect this and show higher than what is normally circulating. We usually advise 24 hours between last dose of Levo and blood draw so if you take your Levo in the morning then delay until after the test, or if you take it at night then delay that dose until after the test. These are patient to patient tips which we don't discuss with doctors or phlebotomists.

[Rosieann in reply to SeasideSusie]

Thanks all bloods done early morning before 9am fasting and leaving off Levothyroxine for 24 hours. I will post other results now. I am confirmed iron deficient, folate deficient, B12 deficient and vit D deficient

[Rosieann in reply to SeasideSusie]

JANUARY 2017

THYROID PEROXIDASE ANTIBODY 358 (<34 IU/ML)

APRIL 2018

FERRITIN 31 (30 - 400 UG/L)

FOLATE 3.7 (4.6 - 18.7 UG/L)

VITAMIN D 45.2 (25 - 50 NMOL/L

Deficiency)

B12 269 (190 - 900 PG/L)

[SeasideSusie Remembering in reply to Rosieann]

Rosieann

Your raised antibodies confirm autoimmune thyroid disease aka Hashimoto's which is where the antibodies attack the thyroid and gradually destroy it.

You can help reduce the antibodies by adopting a strict gluten free diet and supplementing with selenium l-selenomethionine 200mcg daily. Keeping TSH suppressed can also help reduce them.

I'm on my tablet now so don't have all my links to hand as they're on my PC, but check out my replies in this thread as they also refer to you, particularly the lengthy reply towards the end.

healthunlocked.com/thyroidu...

If you've had all these deficiencies confirmed then I assume you have been prescribed treatment.

[greygoose]

Stopping your levo for 8 weeks will not help your TSH settle down, it will just make you more hypo. Were those labs done during the time you were off your levo? If so, it shows your thyroid is making some hormone on it's own, but your TSH says it's not enough. Your TSH says you're hypo, and that's why you were put on levo in the first place. Thyroids do not heal themselves, I'm afraid - in fact, they don't heal at all.

[Rosieann in reply to greygoose]

Sorry no the ones done with me off are

TSH 4.59 (0.2 - 4.2)

FT4 12.9 (12 - 22)

FT3 3.8 (3.1 - 6.8)

[greygoose in reply to Rosieann]

Well, there you are then. The Frees are right at the bottom of the range. You can't live like that.

[Angel_of_the_North in reply to Rosieann]

Well, those show you can barely make any T4 even with your TSH up high and so there is not enough to convert to a decent amount of free T3. You need your replacement hormones.