just started levothyroxine today

[Freesiaspring]

I have hypothyroidism caused by thyroiditis (probably the postpartum kind) I’ve started my pills today.

The symptom bothering me most is muscle/joint pain. Did anyone see a quick improvement in this after taking the drug?

Does anyone have any experience with water retention improving?

I have lots of other symptoms but particularly wondering about how fast anyone saw an improvement with the above?

thanks for any advice

[greygoose]

Hi Freesiaspring, welcome to the forum.

First of all, levo is not a drug. It's thyroid hormone replacement - the thyroid hormone T4. It replaces the hormone your thyroid can no-longer make enough of.

The symptom bothering me most is muscle/joint pain. Did anyone see a quick improvement in this after taking the drug?

Things rarely happen quickly with hormones. But, it does depend on how much you were started on, and whether or not the muscle/joint pain is caused by being hypo. Very often it's caused by nutritional deficiencies, which hypos often have. Low vit D, for example, can cause terrible joint pain. And Muscle pain can be caused by low zinc. Have you had your nutrients tested? And have you had antibodies tested? If so, it would help us to help you if you poste the results and ranges so that we can see exactly what is going on.

[Freesiaspring in reply to greygoose]

Thanks so much. My situation is a little unusual…

There’s quite a lot of reasons to think that my thyroid may have been mildly slow for a while (potentially even decades) - although this was first picked up in my pregnancy with a low T4 but normal TSH. This was also the case 6 weeks after my baby was born. However, no other testing was done… so no details to share other than a hunch/possible symptoms.

I was expecting to be gently medicated for this hypothyroidism a few months ago when to my shock we found out I was then suddenly hyperthyroid (with T4 or around 34 and 37… and a TSH of less than 0.005).

The only antibody I have had raised is Anti-Tg. This reflects my situation probably being post partum thyroiditis rather than the other causes. Then a couple of weeks ago, it did its classic switch up - and has gone fully slow with low T4 and high TSH.

I have joined this group for some support as it’s all been a lot. I was very unwell in my pregnancy (and gained 100 pounds including baby and lots of fluid). I have now lost 60 of those pounds (including baby and lots of fluid), but these are not the sorts of numbers I’m used to. The shifting hormones have also obviously had loads of impacts - physical and emotional. Really hoping that my body pains might reduce now with some treatment.

Happily my baby seems well and unaffected by my health issues, but it’s all been pretty hard at times x

[greygoose in reply to Freesiaspring]

Actually, I think your situation is classical. We read about it all the time on here. Women being told they have post partum thyroiditis when they actually have Autoimmune Thyroiditis - aka Hashi's - which very often starts just after child-birth, with hyper-like blood test results. But PPT doesn't have antibodies. Those are positive Hashi's (or Ord's - same thing but without a goitre) antibodies.

After the false 'hyper' phase, you go hypo because your immune system is slowly destroying your thyroid.

although this was first picked up in my pregnancy with a low T4 but normal TSH

What do you call a 'normal' TSH? When a doctor says 'normal', all he means is that the result is somewhere within the range. But, the ranges are too wide. And a truly 'normal' (euthyroid) TSH is around 1. But if the range is 0.42-5.6, a doctor will tell you it's 'normal' if it's 5.5.

So, if you have reason to believe that you've been hypo for decades, and blood test results showed low FT4 during pregnancy, then the likelyhood of you having had Post Partum Thyroiditis - which goes away after a few months - are very slim. You have Hashi's, I'm afraid.

[Freesiaspring in reply to greygoose]

Hi - I don’t think I do have hashis, but time will tell. Hoping mostly to end up in less pain (joint and muscles) than I am now.

[greygoose in reply to Freesiaspring]

The only antibody I have had raised is Anti-Tg.

Your antibody test says you do. The antibodies may have now gone back into range, but antibodies fluctuate all the time. But the Hashi's will still be there. It doesn't go away.

[Freesiaspring in reply to greygoose]

My endocrinologists have not said this and have expressly told me that I have thyroiditis- I don’t think they’d lie.

[helvella Administrator Thyroid UK in reply to Freesiaspring]

Freesiaspring,

You have thyroiditis. No-one is suggesting they are lying about that. The issue is whether it is transient post-partum thyroiditis. Or autoimmune (Hashimoto's or Ord's) thyroiditis.

A positive antibody test (Thyroid Peroxidase or Thyroglobulin) most often indicates a form of autoimmune thyroiditis.

greygoose is absolutely right that this is a pattern we have seen so many, many times.

[Freesiaspring in reply to helvella]

Hi, I initially asked about joint pain and muscle pain and fluid retention and explained I’d joined for support on my first day of treatment.

I don’t really know why we are discussing what form of thyroiditis I have.

[greygoose in reply to Freesiaspring]

Because it's important to know due to the way the disease works.

You've already said that you started out hyper, then went hypo. Well, that is likely to happen again with autoimmune thyroiditis - aka Hashi's/Ord's, but UK doctors never call it that, they always call it autoimmune thyroiditis, or just thyroiditis. And your doctors won't have a clue what's going on and will want to slash your dose, or accuse you of misusing your levo, or whatever. So it's important that you know what's going on.

If you're not interested, I apologise, but I thought it was pretty important and a form of support - knowledge is power. But, I'll shut up now, and leave the support to others more capable of it.

Forgot to say that I did answer your question about joint and muscle pain, don't know if you noticed.

[Freesiaspring in reply to greygoose]

Tbh you have made me feel much worse today. Might just leave this group.

[greygoose in reply to Freesiaspring]

I'm sorry to hear that. It certainly wasn't my intention. I just replied to you the way I reply to everyone and most people find it helpful. But I don't know what you wanted to hear.

[Rosebud1955 in reply to greygoose]

🙏🏻

[helvella Administrator Thyroid UK in reply to Freesiaspring]

Very much because post-partum thyroiditis will, in many cases (around 70%), resolve with a year. Thus symptoms such as muscle pain and fluid retention will also resolve.

But if you have one of the autoimmune forms, it won't resolve and the muscle pain and fluid retention will only improve by adequate treatment which will be very long-term. Unfortunately, some suffer muscle pain and/or fluid retention for a very long time. Partly because many are under-treated with doctors unwilling to increase dose and/or allow combination treatment including liothyronine (if needed).

The last thing I want to do is reassure you all will be well in a few weeks if it won't or is unlikely to happen. Though it would be great if I could do so.

And a lot depends on your dose. If you have been started on 25 micrograms, you will very likely have to go through a few dose increments before you are taking enough to see symptoms really resolve. Each increment might take six or eight weeks and will need another blood test. With the poor availability of GP appointments, this can take significantly longer. Therefore, it can take as long, or longer, to get to the best achievable treatment than it would for post-partum thyroiditis takes to resolve!

A potentially informative link:

Postpartum Thyroiditis

ncbi.nlm.nih.gov/books/NBK5...

[tattybogle]

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A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

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