Hypothyroidism to hyperthyroidism and back

[docasj]

Hi

I’m a 35 year old female and was diagnosed 10 years ago with hypothyroidism and have been taking varying doses of levothyroxine since then depending on my blood test results. I stopped taking anything in 2012 or beginning of 2013 after seeing a doctor from my country that said that the levels were good and I did not need to take medication anymore.

I remained around 1 year without medication but towards the end of that time I was feeling horrible and went to see a GP that told me never to do that again and that I would always have hypothyroidism and should just lower the dose if necessary but never outright stop it. And I haven’t since then.

In 2018 test results showed that my thyroid levels were now high and my endocrinologist put me on methinazole and Inderal for I think a couple of months but I don’t remember exactly. Afterwards the thyroid levels went back down and she put me back to levothyroxine 100mcg (I was 50mcg before) for a while and after my next blood test I went back to 50mcg levothyroxine. Earlier this year I was feeling awful and after a lot of freaking out and not really knowing what to do i figured my thyroid levels were off. I hadn’t seen my endocrinologist at this point for over a year because I was supposed to see her in April last year when lockdown happened in my country. She confirmed last Tuesday (4 May) that my levels were high again and she put me on 5mg methinazole and 10 mg inderal and I have a follow up appointment with her in July.

I wanted to know if anyone has had this kind of experience and what they did to revert it if possible or if they know of something that I shouldn’t be eating that may be messing with my thyroid function.

I am also on Zoloft 50mg. Even when taking levothyroxine I am never completely symptom free but I have managed to deal with therapy and dieting. But when this change to hyperthyroid happen I am completely thrown. I am currently spending most of my time in bed and had to ask for 2 weeks off because my brain just wasn’t working at all and the only things I managed to do was stay in bed and sometimes listen to music, read some romance novels and watch shows on Netflix. I’m staring to feel better but I still have no energy and my schedule is completely off,because even though I’m waking up late like today, a couple of hours after waking up I’m tired again and need to get some sleep

[fuchsia-pink]

Welcome to the forum.

I think you are being mucked about BIG TIME.

Do you have any blood results (and related lab ranges as these vary from lab to lab) to support this wild changing in dose? Have you had ALL antibodies testing? If you are in the UK you are legally entitled to your blood results.

Basically, if you are hypo (under-active) you take levo, and should take it every day as - except in rare cases eg where it's come about as a result of pregnancy - you will need to take it for ever. Best practice is to test bloods every 6 - 8 weeks and increase dose in 25 mcg increments until TSH is below 2 and probably below 1 and free T4 and free T3 are in the top third of their lab range. Doses shouldn't be reduced on the basis of the TSH result alone - you need to see what your actual thyroid hormones are doing - and it's important to test antibodies for Hashimoto's- by far the biggest cause of hypothyroidism - because a "Hashi's flare" can cause your results to go "rogue" and mimic hypERthyroidism - but you aren't hyper.

If you are hypO you can't then become hypER - but you can be over-medicated (ie if free T3 goes over-range). Unfortunately in the UK they won't routinely test for free T3 - and also never test the key nutrients you nee to have checked - ferritin, folate, vit D and B12 - unless you, the patient, ask nicely (and even then you may not get anywhere). Have you ever had these tested?

It follows that it is very wrong to switch you from levo to medication for an over-active thyroid and Graves disease (which is only detected by testing TRAb antibodies). If you are hypER your free T3 and free T4 will be wildly over-range (without being on levo) and you are likely to have palpitations etc.

I'm not surprised you feel dreadful. If it were me I'd be getting hold of all recent (last 5 years) blood tests - and checking what has and hasn't been tested, and getting new FULL testing done. If you post your historic blood results (and lab ranges) the lovely people here will help you to understand them

Good luck x

[docasj in reply to fuchsia-pink]

Thanks I’ll try to get a hold of past lab results to post here

[greygoose]

Sounds like you have Hashi's - aka Autoimmune thyroiditis. Do you know if you've ever had your TPO antibodies tested? Doctors ought to recognise this, but the truth is, they know nothing about it.

However, if you have Hashi's, methinazole is not the right treatment. If your levels go high, you just stop the levo until you feel hypo again, and then restart it. You don't need anti-thyroid drugs because your thyroid is not over-active.

Also, I think your doctor is grossly under-medicating you. 50 mcg is just a starter dose. You shouldn't be on it for more than six weeks before it's increased by 25 mcg. And that process should be repeated until you feel well. If you were optimally medicated, you wouldn't need the Zoloft. Your doctor obviously knows absolutely nothing about treating hypothyroidism.

It is very, very important to always get a print-out of your blood test results, every time you have a blood test, so that you know exactly what was tested and exactly what the results were - we can help you with understanding them. And, that would avoid situations like this.

I wanted to know if anyone has had this kind of experience and what they did to revert it if possible or if they know of something that I shouldn’t be eating that may be messing with my thyroid function.

Millions of people have this - which is why it's so strange that doctors know nothing about it. Hashi's is the main cause of hypothyroidism in the Western World. There's nothing you can do to reverse it, I'm afraid, and it certainly has nothing to do with what you're eating. Although, cutting gluten 100% out of your diet could help with symptoms. But, none of this is your fault. It's just the way it is.

[docasj]

Thank you. I’ll try to get past test results and also get tested outside my country but with COVID going on I have no way to do that and have to rely on the advice of my doctor herr

[docasj]

Honestly this is making me freak out a little. I think I had some sort of antibody test done a couple of times. I’ll try to go to the lab that did them tomorrow to see if they still have the results stored and can give me both so I can post it here and try to get all my other blood tests to post here as well as far back as I can get which will probably only be 2017 or 2018

[fuchsia-pink in reply to docasj]

There are different antibody tests for Graves and Hashi's - so it's worth checking you've had them all. I don't know much about Graces - but if you ha raised antibodies for Hashi's (which seems quite likely) - you don't need to keep testing them - they'll go up and down as they see fit but you can't cure it, so it's more important to be aware of it.

Quite a lot of people with Hashi's find going (strictly) gluten-free helps and/or dairy-free - so may be worth a try too