PTU (Propylthiouracil)

[Nat89]

Has anyone been prescribed PTU (Propylthiouracil) for a low TSH? My TSH is 0.01, T4 11.5 and T3 5.8. My Endo wants to put me on this one as i am trying for a baby and it's the safe one. Has anyone had any side effects?

[SlowDragon Administrator]

Please add ranges on Ft4 and Ft3

Ft4 looks extremely low.

This suggests HYPOTHYROID.....Autoimmune hypothyroid disease also called Hashimoto’s frequently starts with transient hyperthyroid results.....before becoming increasingly hypothyroid

PTU or Carbimazole should only be prescribed for confirmed Graves’ disease.

To confirm Graves’ disease it’s essential to test TSI or Trab antibodies

Have you had TSI or Trab antibodies tested.

We see many early stage Hashimoto’s patients misdiagnosed if antibodies are not tested

Essential to test vitamin D, folate, ferritin and B12 too

[Nat89 in reply to SlowDragon]

My TSH RECEPTOR ANTIBODY - 0.4IU/L - Normal range: <0.5IU/L this was done last year.Currently waiting for up to date results.

[SlowDragon Administrator in reply to Nat89]

Recommend Getting full thyroid and vitamin testing done ....via Medichecks if GP/endocrinologist won’t

Medichecks have offer on today

TPO, TG antibodies, Ft4, Ft3, TSH, vitamin D, folate, ferritin and B12

Come back with new post once you get results

[Nat89 in reply to SlowDragon]

great thank you, i have been tempted to get one as it just takes so long to get anything done with the GP this has been going on since 2017 and now they are only just putting me on meds.

[SlowDragon Administrator in reply to Nat89]

But your TRab test is ambivalent

You need TPO and TG antibodies tested for Hashimoto’s

Ft4 is low. If you had Graves’ disease Ft4 would be high and way above top of range

Likely low vitamin levels

[Nat89 in reply to SlowDragon]

Hi, i got my results back what do you think?

[Nat89 in reply to Nat89]

and here

[SlowDragon Administrator in reply to Nat89]

Results do NOT suggest Graves disease

Far more likely hashimoto's

Hashimoto's frequently starts with transient hyperthyroid results before becoming increasingly hypothyroid

PTU or carbimazole are not correct treatment for Hashimoto's

Getting ultrasound scan of thyroid can be helpful

[jimh111]

Really need the reference intervals for these results. Your fT3 looks high normal and fT4 low normal so a TSH of 0.01 is very strange. You may have hyperthyroidism which your endo seems to be assuming or you may have autoimmune thyroiditis which will probably be associated with fT3 and fT4 that jump around.

I would ask for TPO, TBG and TRAb antibody tests to try and find out what is going on. It seems premature to jump to the conclusion that you are hyperthyroid. What are your signs and symptoms? Do you know what your resting pulse is?

[Nat89 in reply to jimh111]

These are the ranges from last year, which will be the same for ones above. I am currently waiting for latest anti bodies results as they have not come back yet but endo still wants to put me on PTU.

TSH - 0.16 - Normal range 0.35 - 4.94mIU/L

FREE T4 level - 11.60 pmol/L - Normal range: 9.01 - 19.05

PROLACTIN - 223mIU/L - Normal range: 109 - 557mIU/L

OESTRADIOL - 126pmol/L

TSH RECEPTOR ANTIBODY - 0.4IU/L - Normal range: <0.5IU/L

My symptoms are very cold hands and feet most of the time, weight gain but that could be from working from home now since lockdown :). Mood swings, goiter in front of neck. Thats it really.

[jimh111 in reply to Nat89]

Unless the TRAb has jumped up since last year this does not look like hyperthyroidism and I don't see why they would prescribe PTU. It is important to have TPO, TBG measured as it could well be autoimmune thyroiditis (Hashimoto's) which generally causes hypothyrodism but can produce spurts of thyroid hormone as the thyroid comes under attack.

If you are secreting erratic amounts of thyroid hormone it may be necessary to use 'block and replace'. This is where they give you carbimazole or PTU to block the thyroid and a full dose of levothyroxine to replace it. This gives steady hormone levels.

For now they need to see if your thyroid is under autoimmune attack (quite likely I think) and determine if you are currently hypo or hyper thyroid. It's most important to monitor your signs and symptoms rather than just looking at your TSH.

[kittyelen in reply to jimh111]

Sounds like good advice, and also as you are trying for a baby they would advise to get the thyroid under control before trying. PTU is the one they would use as Carbimazole is more risky if you get pregnant on it, I don't think you should worry too much about side effects. Main thing is about getting the thyroid levels to a stable and advisable level before trying for the baby, hope everything goes well

[Nat89 in reply to kittyelen]

Thank you so much 💓

[PurpleNails Administrator]

You mention in a previous post you had a CT scan with iodine contrast showing you have 2 benign over producing nodules.

I am wondering if this was a specific uptake scan of your thyroid. Do you have a copy of the report from the specialist?

You seem to have a history of fluctuating in range, occasion low frees. With low TSH.

Anti thyroid medication should only be prescribed if continuously above range.

Some over producting nodules cause levels to elevate very gradually (over years even) whereas with Graves levels spike very high, symptoms often becoming unbearable suddenly.

I agree you need to have TPO and Tg ab tested as you may even have more than 1 thyroid issue.