Symptoms worse on meds and getting new ones!

[Compostella1]

I’ve had 2 stints on Eltroxin- one 25mcgs for approx 6 weeks which exacerbated symptoms so stopped.. symptoms gradually subsided.. then crept up again and bck on eltroxin 50mcgs - as thought the original low dose was perhaps the source of the issues.. but now a week in and the symptoms have gone through the roof and really feels like this medication is sending things even more haywire- intense buzzing feeling, chronic insomnia- 4 hours a night- and anxiety. Last night pain between shoulder blades and a discomfort when trying to get a ‘big’ breath. All ok again this morning. Def feel last 3 days things getting increasingly worse.

Has anyone found this medication has actually caused some issues and found alternatives etc?

My symptoms were pretty bad before I started this 2nd run and at a TSH of 63 a week ago I Hv to address it some way.

Any thoughts wld be helpful.

[SlowDragon Administrator]

50mcg levothyroxine is only a starter dose

It takes 6-8 weeks for each dose to have full effect. Then bloods are retested and dose levothyroxine increased up by 25mcg

It’s common to feel worse as you get started on levothyroxine

Which brand of levothyroxine are you currently taking

Essential to test vitamin D, folate, ferritin and B12

Has this been done?

Have you had coeliac blood test done

Are you on strictly gluten free diet

You may need to be prescribed beta blocker if you really can not tolerate levothyroxine, in order to get dose increased

Anxiety is common hypothyroid symptom and will improve as dose levothyroxine is increased upwards

[Compostella1 in reply to SlowDragon]

Hi,

Thx for ur reply.

I’m in eltroxin. I’ve just gone to a&e as felt my gp does not seem very up on thyroid and thought I wld benefit for a review.

The dr advised I came off the medication as he felt it rly was not agreeing with me. I spent some time last year on it and jst felt after a week on it like it was cranking up again but this time with more intensity quicker. The buzzing was intolerable the last few nights and a real feel like my body was not tolerating. My face was flushed but I felt very cold. Internal intense buzzing in my body , inability to sleep but was exhausted.

I jst can’t see how this can be a correct feeling. I know I have symptoms that are pretty bad before I medicated again but the last few days have been quite scary. Rly feel I need endocrine input

[SlowDragon Administrator in reply to Compostella1]

Starting and stopping levothyroxine makes it worse

Roughly where in the U.K. are you

Email Thyroid UK for list of recommend thyroid specialist endocrinologists

NHS and Private

[e-mail]

It’s often many months to get referrals to NHS endocrinologist

So you need to see Privately

It can be difficult initially to start on levothyroxine. The only way I could tolerate was to take beta blocker (propranolol) at same time .....but knowing what I know now ....it was likely better to have addressed low vitamins and gluten intolerance

Especially as propranolol lowers magnesium too

But the longer you go without thyroid hormones the more difficult it gets to get started

Propranolol can’t be prescribed if you have asthma

Do you think you may be lactose intolerant?

You might need liquid levothyroxine or lactose free levothyroxine tablets

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Just replied re vitamins on previous post

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2

When adequately treated, TSH will often be well under one. Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

[Compostella1 in reply to SlowDragon]

Hi,

I’m in dublin in Ireland and requested a referral to this consultant privately. After listening to Dr Toft’s speaking on prescriptions etc I wanted a thyroid endo rather than diabetes endo which most of them are.

beaconhospital.ie/consultan...

I am hopeful of getting an appointment soon- referral was only done late last week.

Can I ask what symptoms u were experiencing that were difficult, which is why the propanol was prescribed?

Re vitamins- I have increased my vit D supplement and my B12 looks good (almost top of the range)

MY ferretin in low- this may be down to anaemia last year and take some time to recover.. I am increasing all the time in diet and do take a low grade supplement.

I am gluten free a week now and all going fine from that perspective. I am sure it will take a while to see the benefits of that.

I honestly don’t think I can knowingly take the drug again until the endo directs me as I find it difficult to function and very unnerving.

[SlowDragon Administrator in reply to Compostella1]

You can read my profile

But yes levothyroxine caused terrible anxiety, palpitations, chronic fatigue, exacerbated existing hypothyroid symptoms until on high enough dose levothyroxine.....

Levothyroxine doesn’t top up failing thyroid, it replaces it. So it’s important to be on high enough dose levothyroxine

[SlowDragon Administrator in reply to Compostella1]

The buzzing was intolerable the last few nights and a real feel like my body was not tolerating. My face was flushed but I felt very cold. Internal intense buzzing in my body , inability to sleep but was exhausted.

These are all absolutely typical symptoms. It does improve

You have to be patient, levothyroxine takes 6-8 weeks for each dose to have full effect