Anybody with postpartum thyroiditis who has come off Levo?

[Twan12]

Has anyone had postpartum thyroiditis and recovered (reduced/come off Levothyroxine)? Interested to hear other stories. Currently reducing but starting to feel really rubbish. Gone from 125mcg to 25mcg. Are you supposed to feel worse before it gets better or is this a sign I need to stay on medication? I can't speak to my Endocrinologist to discuss what's normal because he's unavailable due to pandemic.

[SlowDragon Administrator]

Why do you think this is temporary post partum thyroiditis and not Hashimoto’s?

Previous post shows high antibodies, most likely due to Hashimoto’s

healthunlocked.com/thyroidu...

[Twan12 in reply to SlowDragon]

Hi SlowDragon,

I'm with a different Endocrinologist now and he tested my antibodies and listened to my history and symptoms etc and said it was most likely postpartum. Antibodies were originally over a thousand I think and they're about 50 now.

I, initially, reduced myself from 125 to 100 last November because I was sick to death of my heart palpitations, they were getting so bad! And they went almost immediately after I reduced. My new Endo looked at all my results in January this year and said I was almost over active in a lot of them so said I could try gradually reducing to see if my thyroid responds. It was smooth sailing until I got to 50, then I started to feel a bit crap. Now on 25 I'm struggling! So wondering if I should be on 75, that's where I felt best. But didn't know whether I have to go through the pain before my thyroid starts up again or something... Not sure how it works, whether I should feel okay immediately after a reduction or whether it gets worse before it gets better.

[tattybogle in reply to Twan12]

Hi Twan,i found this *** in a paper which also has references antibodies in Post Partum Thyroiditis. The rest of the paper is quite complicated for a sunday morning. you might need a cup of coffee first!

Differential Diagnosis of the Hypothyroid Phase of PPT

The differentiation of hypothyroid PPT from Hashimoto’s thyroiditis is difficult. Both conditions present late, and the majority of affected women are TPOAb positive. However, the majority of those with hypothyroid PPT will not require thyroxine beyond the first postpartum year, and drug withdrawal is safe in them – they will remain symptom-free with TSH levels within the reference range. However, it is prudent to remember that at the end of the first postpartum year, between 4% and 54% of these women may require long-term thyroxine therapy as they may have become permanently hypothyroid (Stagnaro-Green 2012). *** Patients with Hashimoto’s thyroiditis on the other hand will become symptomatically and biochemically hypothyroid when thyroxine is withdrawn and will require long-term thyroxine replacement therapy.***

link.springer.com/reference...

[SlowDragon Administrator]

Your likely extremely under medicated if now only on 25mcg

Suggest you get FULL thyroid and vitamin testing ASAP

[Twan12 in reply to SlowDragon]

I've booked a test for Monday to see what's happening. I'm also really iron deficient (getting that checked Monday too)

[SlowDragon Administrator in reply to Twan12]

Far to many endocrinologist only dose based on TSH.

Absolutely essential to ALWAYS test Ft4 and Ft3 plus all four vitamins

Come back with new post once you get results

Make sure to do blood test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

[Twan12 in reply to SlowDragon]

I will, thanks. Which 4 vitamins? They're doing a full blood count, testing iron levels, ft3, ft4 & tsh

[SlowDragon Administrator in reply to Twan12]

Vitamin D, folate, B12 and ferritin (storage form of iron)

[Petf in reply to SlowDragon]

What is “storage form of iron” ? - I can only find “Gentle iron” & iron “complex”

[helvella Administrator Thyroid UK in reply to Petf]

Ferritin is a storage form of iron. Our bodies make ferritin which is a protein that binds iron. That allows us to store (and distribute) iron without causing iron overload. The iron atoms are unable to act like free iron while they are in the form of ferritin.

[humanbean in reply to Petf]

Iron is found in the body/bloodstream in two forms.

The first is "serum iron" which is usually referred to on test results as just "iron".

There is a second form of iron called ferritin. Each molecule of ferritin contains up to 4,500 atoms of iron.

A healthy body moves serum iron into ferritin, and moves ferritin into serum iron many, many, many times a day as and when needed.

People are likely to feel healthiest when both ferritin and serum iron are at their optimum levels. But achieving that can be easier said than done, and doctors often won't test both. They usually test just ferritin if they want to test if the body has sufficient iron.

People can have any combination of low, normal, or high serum iron, and low, normal, or high ferritin. Since excessive iron/ferritin can be poisonous to the human body it is important when trying to raise either iron or ferritin that neither gets too high and that testing is done regularly while supplementing.

[SlowDragon Administrator in reply to Twan12]

Ferritin

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

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.

[SlowDragon Administrator in reply to Twan12]

Vitamin D needs to be at least over 80nmol. Often around 100nmol may be better

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

[SlowDragon Administrator in reply to Twan12]

Same applies to low B12 - extremely common in hypothyroid patients

All patients who are hypothyroid should have B12 tested

ncbi.nlm.nih.gov/pubmed/186...

There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,

Folate supplements can help lower homocysteine

ncbi.nlm.nih.gov/pmc/articl...

Levothyroxine can decrease serum homocysteine level partly; still its combination with folic acid empowers the effect. Combination therapy declines serum homocysteine level more successfully.

[shaws Administrator]

25mcg is usually an incremental dose and I doubt 25mcg can do you any favours, i.e. restoring your thyroid hormones to optimal.

This is a link that may be helpful:-

hopkinsmedicine.org/health/...