Will this ever end? : I was diagnosed with... - Thyroid UK

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Will this ever end?

Flowerpot108 profile image
10 Replies

I was diagnosed with hashimotos a year ago. The following seems to happen on a three month cycle.

1. I get Levo

2. I feel better

3. I feel normal, like I'm not sick, it's amazing.

4. I start to go downhill. Muscle aches and joint pains start coming back along with fatigue and hunger.

5. The return with a vengence

6. I get blood tests done and they increase my Levo.

Bloods are done around every 6 weeks so I usually get a normal test where I'm on range and then the next one shows an increase in TSH in line with symptoms and they up me Levo.

What I want to know is...will I ever get to a point where I stay at point 3. I am well medicated and everything is good.

I don't eat gluten or dairy and i limit soy. I've tried doing the Dr. Wentz paleo diet but it just isn't for me. My body responds well to slimming world and I lost weight well on it, especially when well medicated but even when not if I really stick to it. I eat a good diet filled with fruit and veg and protein. I supplement well in line with tests. I don't drink too much and not at all if my body is not doing so well. I don't smoke. I rest when I need to and exercise when I have the energy to and it makes me feel good...so I'm hoping this is normal and basically at some point the Levo will be replacing what my thyroid isn't putting out in full and then I won't keep having these troughs.

Is that going to happen do you think?

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Flowerpot108
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10 Replies
greygoose profile image
greygoose

Yes. If you keep increasing your dose when necessary, the levo will eventually replace what your thyroid can no-longer make, and you won't have these troughs anymore. The cycle you are describing is perfectly normal, and experienced - more or less - but most hypos.

The problem is when doctors, who don't understand the cycle, decide that your dose is ok based on the TSH and refuse to increase anymore. That often happens, I'm afraid, due to their firm conviction that the TSH tells them all they need to know. It doesn't. The most important number is the FT3, backed up by symptoms - or lack of them. :)

Flowerpot108 profile image
Flowerpot108 in reply togreygoose

Thank you! Very reassuring and I know what to look out for.

greygoose profile image
greygoose in reply toFlowerpot108

You're welcome. :)

SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you now taking

Do you always get same brand

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

Omg this is me to I get exactly the same symptoms, I have just had increase in thyroxine so hopefully joint pain etc,etc will calm down hope you feel better I can totally understand how you feel x

Flowerpot108 profile image
Flowerpot108 in reply toPurpleprincess1963

Hope this is your last need for an increasen

serenfach profile image
serenfach

It does take a while as the docs are very careful with dose increases and those increases take a while to take full effect. It is a slow business but once you find your "sweet spot" and are on the correct dose, things do get better.

We are all behind you pushing you up the hill!

Flowerpot108 profile image
Flowerpot108 in reply toserenfach

Awwwh thanks!

HashiFedUp profile image
HashiFedUp

I know exactly how you feel. I get stable on a new dose and think i can finally live my life and then Bang! back the old friend comes.

My endo says that some people never get to perfect. Like 5% of his patients. And we have to fiddle with the doses, repeat bloods, leave it for a bit (then I go running a lot!) then I feel ill again and get grumpy and just walk for exercise. Im having an episode at the moment - four weeks or so. So need to book bloods and call endo. It seems endless but Ive kind of accepted that its my life.

PS post your bloods every time you post, so we can advise on where they should be. Also vitamin D is important as well as other mineral levels.

Flowerpot108 profile image
Flowerpot108 in reply toHashiFedUp

Oh my gosh that is SO depressing. I hope i'm in the 95%! I wonder if the 5% would do well of they strictly followed the Dr. Wentz diet and supplement routine?/

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