Felt better then much worse? Please advise

[MivoUK]

Hypothyroid for around 2 years. Was stable on 50mcg levo ED for most of that time until about a month ago when my TSH rose to 130+

While my TSH was this high I genuinely felt like I was dying. Extreme disorientation, detached from reality, dizziness, lack of co-ordination ect.

Been on the new 100mcg dose for 17 days I think now.

On day 3-4 of taking the higher dose I felt better. And things gradually got better and better up until the 25th (Yesterday). I gone to bed, woke up and I suddenly felt extremely disorientated on waking. Dizziness, strange detached feeling ect.

Today I also woke up feeling similar to yesterday.

I even gone to college today and made a huge show of myself in reception as I believed it was Tuesday. The receptionist assured me it was Thursday but I was still like no, its 100% Tuesday and I have English this afternoon!

This has really scared me a little as I feel like I am going delirious

Is it normal to have a sudden decline of symptoms after feeling better on new dose 14-17 days in?

I did start taking the Tesco's multivitamins in the last 2 days. But I always take them 4-5 hours after my levothyroixine to prevent interaction.

Previous Blood Results (Before increasing dose to 100mcg)

ibb.co/M6KqkBL

Other Medications: Seretide 250, Nicotine Lozenges

I guess it might not even be my thyroid who knows!

[shaws]

If you've been on 50mcg of levothyroxine since you were diagnosed two years ago!!!! then that's probably the reason why you do not feel well.

The usual routine is that we begin on 50mcg when newly diagnosed, with 25mcg increases every six weeks until TSH is 1 or below and Free T3 and Free T4 towards the upper part of the ranges.

The latter two are rarely tested and I'll give some hints on the best way to get accurate results.

1. Always get the very earliest appointment.

2. Allow a gap of 24 hours between last dose of levo and the test (we usually take levo when we get up with one full glass of water. Although some prefer a bedtime dose)- in that case miss your bedtime dose and take after test and bedtime dose as usual the same day.

A Full Thyroid Function Test consists of:-

TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. Ask GP to test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

As you're now on 100mcg of levo maybe the 50mcg increase may be a bit too much but wait a few days to see if you settle down.

It's horrible when we're diagnosed and given levothyroxine but no explanation given as to what hypothyroidism really is and its a pity we have to go online to try to figure out why we're not improving - even a little to begin with until we're on an optimum dose. Optimum means we feel well with no symptoms.

P.S. I am not medically qualified but had undiagnosed hypothyroidism and TSH was 100 when, finally, I diagnosed myself.

[greygoose]

Your doctor has been wickedly negligent to leave you on 50 mcg for nearly two years. It should have been increased to 75 mcg six weeks later. How on earth did he manage to allow your TSH to get up to 130+? Didn't he do any tests during that time?

So, then he increased your levo by too much. Increases should be 25 mcg at a time, so as not to shock the system. But, in answer to your question, yes, that can happen that you feel better for a while, and then backslide. It just means you need another increase - which is not surprising with that TSH.

So, make sure you get retested six weeks after starting the 100 mcg, and get another increase - but 25 mcg this time.

[MivoUK in reply to greygoose]

No my doctor done no tests in the 2 years that I was taking 50mcg. Back in 2017 I was diagnosed hypothyroid when my TSH was apparently over 150 if I remember right.

They put me on 50mcg, retested after 6 weeks and said my TSH was normal and just to continue taking that dosage.

Which I did until my TSH gone up to 130+ again in the last few weeks.

So I am backsliding again after only being on the 100mcg dosage for just over 2 weeks? Wouldn't a 25mcg increase now be a good idea then? I don't want to slip back into the state I was in 2 weeks ago.

I had a retest about 2 days ago but still waiting for the bloods to come back. The ER insisted that my doctor do the retest after just 2 weeks on the new dose.

Thanks for all the help

[greygoose in reply to MivoUK]

I don't think it's a good idea to increase again so soon, given that your last increase was too large anyway. And, you won't slip back that much, don't worry about that. It's just your body giving you a nudge that you still need more.

Are you still seeing the same doctor? I really think you should find a new one, because this one just has no idea what he's doing.

Retesting after only two weeks won't tell you much because it takes about six to eight weeks for the body to process the increase in dose. But, just make sure you get regular testing for now on. And, always ask for a print-out of your results, every time you have a blood test. It is your legal right to have one in the UK.

[SlowDragon Ambassador]

We never recommend multivitamins

greygoose will explain why

ESSENTIAL to test vitamin D, folate, ferritin and B12

See GP and get these tested ASAP

Nicotine lozenges.......have you recently given up smoking?

Quitting smoking can suddenly make hypothyroidism much worse

[greygoose in reply to SlowDragon]

Ah! Yes! I forgot that. I meant to mention it and then it went out of my head.

So, you shouldn't be taking a multivitamin anyway for all sorts of reasons.

* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.

* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.

* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.

* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. And that will be especially true of a multi-vit from Tesco's. I'm afraid that with supplements you get what you pay for.

* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.

* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.

With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results.

[Inafunk63]

Hey, I was wondering how you’ve been keeping this last while? It’s been a year since you last posted