I was diagnosed with postpartum Thyroiditis a year ago after the birth of my daughter. I went from hyper to hypo and put on 75mcg of Levothyroxine. Told it was permanent (despite med literature and my pharmacist saying the opposite) and discharged back to GP - the endo couldn’t get me quicker out of her office at the first mention of symptoms with normal levels!
More recently, however, I started getting hyper symptoms again, so had TFTs checked, but not T3:
TSH: 0.01 (normal 0.27-4.20)
Free T4: 27.0 (normal 12-22)
I was relieved, thinking that it was the levo causing the hyper levels and that perhaps I am in recovery. My GP recommended I reduce my levo to 50mcg and test again in 2 weeks to see if they’re coming down, which I did.
But, unhappy with the hyper symptoms (palpitations, v agitated, sweating etc) and before I got the second blood results back, I reduced my levo to 25mcg, thinking I’d be told to do this anyway. I got the results back a few days later:
TSH 0.05 (0.27-4.20)
T4 20.4 (12-22)
- but no phone call saying reduce further - uh-oh.
It’s been a week since I reduced the levo myself to 25mcg, so yesterday asked for a call back from my GP to let them know and what to do. It wasn’t my usual doctor who called me - she got annoyed and said ‘25mcg is much too low, your levels are all normal now, I’ll get your usual GP to call you on Monday and anyway this is an emergency line and I have other patients’- and hung up. Great thanks(!) and are my levels now normal??
My questions are, have I messed up my system/recovery by reducing so quickly? Do I go back up to 50mcg to potentially come back down again? Could it be the levo causing me to feel and have levels that are hyper?
Since having the baby I’m now at high risk of type 2 diabetes, treated for acid reflux and h pylori infection, amongst other autoimmune scares which may or may not be related to the thyroid. Although I’m aware that having further children there’s a good chance I could go hypo again (permanently next time), I admit I do feel rushed to get back to a semblance of my old body, at least for now.
Any thoughts would be welcome, I’m fed up, worried and clueless!
Big thanks xxx
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EvaNik
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Mine apparently went back to normal without treatment, and I had a healthy second pregnancy. I had hypo symptoms again soon after. I never had a hyper stage that I was aware of, though apparently it's common with pp thyroiditis. I felt great for a bit, though tired from the baby, so I always wondered if I'd had a mild hyper phase only - you'd certainly not have treated it!!
The hypo phase though was awful, but maybe worse the second time. We'd moved to a diff town, so diff doctor second time, this one treated me with levo and checked antibodies (never checked before) and as they were very high, and it was my second rodeo, I gave up hope of ceasing treatment.
Are things stable for you now? What dose of levo are you on now? It does seem that irregardless of what’s going on now with my thyroid, future pregnancies carry the risk of further issues.. though v glad to hear you had healthy pregnancies 😊 xxx
OK, well, first of all, I think your diagnosis of postpartum Thyroiditis was wrong. It's true that postpartum Thyroiditis is temporary, but I don't think that's what you have, or it would have settled down by now. I think what you have is Hashimoto's Thyroiditis, which is for life. Do you know if you had your antibodies tested?
A brief rundown on Hashi's:
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.
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.
So, that could explain why your FT4 level went so high - nothing to do with the levo, nor with going into recovery.
My questions are, have I messed up my system/recovery by reducing so quickly? Do I go back up to 50mcg to potentially come back down again? Could it be the levo causing me to feel and have levels that are hyper?
I very much doubt you 'messed up your system' by reducing so quickly - although your system might have been a bit shocked and unhappy. And, quite frankly, I don't think there is any recovery to mess up.
I think it might be a good idea to go back to 50 mcg, but doubtful you'll be going down again. 50 mcg is a starter dose.
Since having the baby I’m now at high risk of type 2 diabetes, treated for acid reflux and h pylori infection
Does this mean you are taking PPIs? Omeprazole or something like that? People with Hashi's usually have low stomach acid - which is what allows the h pylori to take hold - so taking PPIs makes things worse. Unfortunately, the symptoms of both high and low stomach acid are the same, so doctors automatically assume that your acid is high and prescribe PPIs which lower it even further. So, once you've got rid of the h pylori, what you'll need to do is increase the acid level.
Having low stomach acid means that you have difficulty digesting and absorbing nutrients. So, it would be a very good idea to get your vit D, vit B12, folate and ferritin tested, and supplement where necessary. Nutrients all need to be optimal for your body to be able to use thyroid hormone efficiently.
Oh, just one question about that result of 27 for FT4, how long before the blood draw did you take your levo? Do you know how to do blood tests correctly? Normally, on here, we advise people to have their tests as early as possible in the morning - before 9 am - and fast over-night. That is because the TSH is highest early in the morning and drops throughout the day, and after eating. And, leave a 24 hour gap between your last dose of levo and the blood draw. Otherwise, all you will be testing is the dose you just took, and not what is normally circulating in your blood. These are patient-to-patient tips and not to be discussed with medical staff.
Also, if you want to be able to compare results, the testing should always be done in the same way. You cannot compare a TSH result done at 8 am with a TSH result done at 3 pm, for example - although doctors don't seem to know this!
Thank you much for your reply.. you seem to have been able to give me a great deal more insight, especially re: the wider picture, than any dr has. I’ve asked before if there’s a connection between all the issues and never been told anything. You’re correct, I’m on two 30mg PPI tablets a day- all very concerning, the notion that I’m being treated opposite to how I should potentially be treated.
It’s also interesting to know that I could just be having one of these ‘flares’, especially with everything else going on in the body. That said- antibodies were tested twice (a month apart) when I was first diagnosed by GP then hospital:
GP- TPO antibodies: 13 iu/mL (norm 0-34)
Hosp- anti TSH-receptor antibodies: <0.1 (<0.1 iu/L is regarded as negative, 0.1-1.8 is regarded as equivocal, >1.8 is regarded as positive).
No idea what any of that means!! Could it still be Hashimotos?
Had all others tested back in October (vit D, folate etc) all normal, but no idea now. Ferritin was done recently though, also normal. Will ask for the others on Monday, along with antibodies.
Good tip about the testing - usually do morning after fasting but after having taken levo! Will abstain next time til after bloods.
OK, well, if you take your levo before the blood draw, that's why you got those high results. No doctor I've ever met has understood that. It's incredible.
TPO antibodies: 13 iu/mL (norm 0-34)
Those are Hashi's antibodies. And, that result is negative. However, you cannot rule out Hashi's on the basis of one negative result because antibodies fluctuate. Also, some Hashi's people never even have high antibodies. So, it's a case of not being able to prove a negative.
Hosp- anti TSH-receptor antibodies: <0.1 (<0.1 iu/L is regarded as negative, 0.1-1.8 is regarded as equivocal, >1.8 is regarded as positive).
Those are Grave's antibodies. I expect they did those because you had a suppressed TSH, but I doubt your Frees were ever actually high enough for Grave's.
Had all others tested back in October (vit D, folate etc) all normal, but no idea now. Ferritin was done recently though, also normal.
Now, be very careful here. 'Normal' doesn't actually mean 'normal' (doctors have a whole twisted vocabulary all of their own!). It just means 'in-range'. But, in-range isn't the same as optimal. You've probably noticed that these ranges are extremely wide, so it's not logical to think that you will feel the same if your result is at the bottom, as you would if the result is at the top of the range. So, you should always get a print-out of your results and check for yourself. Your doctor, who knows nothing about nutrients, will say they're 'fine', 'good', 'ok' or 'normal' if they're anywhere within that range. So, best to post them on here and see what people say.
Yes it was horrid, side effects were flu-like and pounding head. Finished a couple of weeks ago, I pray it’s been eradicated so I don’t have to go through a repeat. Have you been treated for it too? Xxx
Have you had both TPO and TG thyroid antibodies tested?
Bloods should be retested 6-8 weeks after any dose change in Levothyroxine
Do you always get same brand of Levothyroxine? Many people find different brands are not interchangeable
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 Thyroid antibodies are raised
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)
Last Levothyroxine dose should be 24 hours prior to test,
(taking delayed dose immediately after blood draw).
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Thank you for all this slowdragon, big help. Will ask GP to have these tested if not pay for them myself!! Need to look at the wider picture myself and glean what I can. (Probs from here!) Xxx
Told it was permanent (despite med literature and my pharmacist saying the opposite)
Well no, it is well known that any of the different cases of post-something Thyroiditis (ie post-pregnancy, post-miscarriage, post-viral, post-bacterial) can be permanent. In a paper by Stagnaro-Green published in the Journal of Endocrinology & Metabolism, he wrote that "Postpartum thyroiditis is a common thyroid disorder that presents during the first postpartum year. It is the occurrence of either transient hyperthyroidism, transient hypothyroidism, or transient hyperthyroidism followed by transient hypothyroidism. Most, but not all, women are euthyroid 1 yr postpartum." The condition has more than one one identity and each case can't be expected to follow an identical course. It can mislead us if we judge our disorder playing out, and the associated symptoms, against a single exemplar.
About its permanency, Stagnaro-Green further wrote "Although most women with postpartum thyroiditis are euthyroid by 1 yr postpartum, long-term follow-up reveals an increased prevalence of permanent hypothyroidism. Prospective studies have shown a prevalence rate of hypothyroidism of 23% and 29% at 3.5 to 8.7 yr postpartum. Progression to permanent hypothyroidism was more common in women who presented with higher TSH levels and higher titers of thyroid peroxidase antibodies in the hypothyroid phase of postpartum thyroiditis. The development of permanent hypothyroidism provides further evidence that postpartum thyroiditis is the clinical presentation of preexisting subclinical Hashimoto’s disease."
Yes I think I am focusing too much on the possibility of a potential reversal - when clearly no such thing could exist if the condition was pre-existing, let alone with future pregnancy-related changes ensuring that. That said I do know a few people who had somewhat-spontaneously occurring Thyroiditis (poss due to a virus, I don’t know), who underwent recovery a few months or few years later. But again who knows for how long. I wonder if it is related to pregnancy, it is more likely to have lasting effects. Xxx
Yes, I don't think it is helpful to focus too much on any possibility or outcome tbh, to some extent it will be what it will be (or perhaps more accurately, it will proceed down the road of continuing to be what it already is). That's not to say we should be passive and not do what we can to be more, rather than less healthy, of course; but tying ourselves up in knots about it, isn't helpful either. In a more recent paper by Stagnaro-Green, he asserts that PPT is an autoimmune disorder, and that the data in support of PPT as an autoimmune disease are extensive. He quotes Muller et al that “… postpartum thyroiditis is “just” an aggravation of an existing autoimmune thyroiditis after an amelioration of the inflammation during pregnancy … .” This would seem to separate it quite distinctly from post-viral and post-bacterial thyroiditis where perhaps the condition is 'simply' the temporary result of the thyroid function and the thyroid gland's homeostasis becoming disordered as a result of the non-thyroid illness. In this newer paper he reports that a meta analysis of seven studies revealed higher levels (up to 40%) of women developing permanent hypothyroidism over the ensuing 3–12 yr, than previously stated; and details women at increased risk for developing permanent hypothyroidism as those who had higher titers of thyroid antibodies and higher TSH levels during the initial hypothyroid phase; they were older, multiparous, and had a greater degree of thyroid hypoechogenicity on ultrasound - so perhaps indicating that your risk of permanency may be lower? BTW in a PPT prevention study by Negro et al in 2007, selenium supplementation decreased the incidence of PPT as well as permanent hypothyroidism in TPO-Ab+ women when compared with a placebo control group, and women given selenium also had a significant decrease in the titer of TPO-Ab in the postpartum period. I don't know if that study has been further rolled out, but selenium might be worth considering if planning a further pregnancy.
Thanks much, all really useful literature. I remember when the endo said ‘it’s permanent’ and when pressed for an explanation: ‘because it is’, it got my back up and I felt like I wanted to prove them wrong (before inevitably accepting the outcome a couple months later). But I truly think that if doctors gave explanations, in the way the above articles do, it would go some way in helping patients to understand and accept their diagnosis. Too many times I’ve been told ‘you have this, take this medication’, without explaining the how and why, thus making me feel passive, clueless and not in control of my body.
Oh for heaven's sake, is your Endo a toddler - "because it is ..... nah nah ne nah nah". No wonder you were annoyed. Presumably it meant he didn't know why and you put him on the spot.
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