Thyroiditis

[Mazzahk]

Hello

I was diagnosed with hypothyroidism over 10 years ago and have been taking Levothyroxine at varying dosages since. Until a month ago I was taking 125 mcg.

About 5 months ago, I felt I was struggling particularly with fatigue. I’d had a busy/stressful year so thought I just needed a holiday. At the beginning of October I developed what I thought was laryngitis. After a couple of visits to GP, I was referred to ENT. After an examination she said there was nothing wrong with my throat and suggested it might be thyroid related - especially as blood tests were showing I was over active (sorry don’t have those results). My GP received a call from the hospital who suggested that my thyroxine be reduced from 125 to 75 mcg.

I then had a neck scan and thankfully there was nothing sinister but my thyroid was inflamed.

Throughout this time I haven’t been able to speak (over 10 weeks) and have been feeling just awful.

Yesterday I had another hospital appointment which I had hoped would be with someone with thyroid knowledge. Unfortunately, it was an ENT specialist again. He deferred all advice about treatment to my GP. However he did say that it might be worth cutting my thyroxine out completely and/or being put on steroids. I also had blood taken again yesterday so hope to see my GP early next week. The ENT guy said he was also testing for antibodies. I did this myself privately 3 years ago and the result was I have Hashimotos. At that point I moved to a gluten free diet and felt improved but I’ve still really struggled, although not a crash like this.

Now 4 weeks after having my dose reduced, my voice is very, very, very slightly returning so assuming the inflammation is reducing although I can physically feel the inflammation. Still feeling exhausted.

Has anyone else had an episode like this? What did they find useful to do?

Many thanks

[SlowDragon Administrator]

First thing is, do you have any actual blood test results?

if not will need to get hold of copies.

Likely they only tested TSH which is completely inadequate

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Your previous posts show you were extremely poor converter of Ft4 to FT3

Strongly recommend getting FULL Thyroid and vitamin testing. Far too often medics only look at TSH

Dose reduction likely to lower FT3 even more.

Bloods should be retested 6-8 weeks after any dose (or brand) change in Levothyroxine

Have you had brand change in Levothyroxine

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

[Mazzahk in reply to SlowDragon]

Hello

No sorry I don’t have any of my blood test results at the moment. I’m intending to get them when I go to GP next week. I will ask for a full set to be done as well.

I usually follow your guidelines when going for blood tests but didn’t yesterday. Long story.

Thanks for the advice though - appreciate it.

[MichelleHarris]

Yes I’m experiencing the same !

I have an urgent neck ultrasound booked in Jan ( urgent from 29th Nov Lol!) after my main GP’s dismissal of my symptoms. My new GP was alarmed by how ill I looked as soon as I walked in the door.

I feel that the Thyroxine is making my throat swell and when Ive tried taking T3 its even worse.

I’ll follow you as you are further on in your investigations. I hope you feel better soon.

How long do they intend to leave you without Thyroxine?

[Mazzahk in reply to MichelleHarris]

Hi

Sorry to hear that you are suffering this way too.

The ENT specialist suggested I might come off thyroxine, but he has left this for the GP to decide so not sure if this be will be the “official” advice.

Looking forward to following your story too and hope that it comes to a successful conclusion!

[greygoose]

he did say that it might be worth cutting my thyroxine out completely

Why would he suggest that without even seeing any labs? I very much doubt that the levo is causing the inflammation. More likely to be a Hashi's 'hyper' swing, but without any lab results, impossible to say.

[Mazzahk in reply to greygoose]

Thanks fir your reply.

I did think that was strange! I’ll wait to see what my blood test results are and then ask further advice then.

[greygoose in reply to Mazzahk]

You're welcome.

[SlowDragon Administrator in reply to Mazzahk]

Never ever agree to a dose decrease unless FT3 is over top of range

You need Full Thyroid and vitamin testing

[Mazzahk in reply to SlowDragon]

Great advice. Thank you!