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Thyroid Disorders Message Board
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Old 03-06-2011, 09:31 AM   #1
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Question Your experience of starting medication

There are a steady stream of new people posting or looking at this form like me who have recently started medication for a thyroid problem. I'm Hypo and I know it will likely take many months before I reach an optimum dose and feel truly better.

It's not easy to wait months and I don't know if you start to slowly feel better over the months as your medication gets into your body and your dosage increases. Or if you only feel a little bit better, until you get to your optimal dose and then you feel lots better (as I've noticed people saying they can feel bad with small changes of dosage/blood levels).

So, I'd like to ask you all - What was your experience of starting medication?

Mine so far (3 weeks on 50mg thyroxine, 4 weeks on 100g thyroxine) is that I had a first day of super energy (mental and physical) followed by 2 weeks of better than usual energy, then 1 week of feeling back to how I was before medication (very upsetting).

Going up to 100mg I've not had a big rush of energy but I'm feeling slightly better than before medication. My mind is a bit clearer, I have more will and want to do things (from taking care of myself and the flat to small bits of studying). My physical energy is not much improved. I don't fall asleep so much during the day but still have bad insomnia (with anxiety dreams and nightmares too when I do sleep ). I still want to stay inside a lot and going outside is exhausting.

Do you remember how it was when you started medication? I'd really like to hear, it would help me not get unrealistic expectations of how quickly I might get better. Many Thanks

 
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Old 03-07-2011, 08:18 AM   #2
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Re: Your experience of starting medication

Hi Alexandra,

It's not a lie that it takes time . . . and when you feel unwell time drags!!

I started on 25mcg in July 2010 and felt worse for a while. Sleep problems, vivid dreams, brain fog, hair loss, severe bloating etc. Dosage increased to 50mcg in October 2010 and felt even worse that before I started medication for a good couple of months. I couldn't walk for more than 10 mins before needing a rest and couldn't iron more than 2 shirts before needing to sit down! I felt like an OAP.

I'm still on 50mcg at the moment (review due next month) but I am feeling a lot better. Hair loss has stopped, my mind feels sharper and my concentration is back on track. I still have problems sleeping sometimes and my stomach is still bad but apart from that I'm feeling ok. I also push myself to go to yoga twice a week, it's a struggle most of the time but it seems to be helping. So it's taken 8 months for me to feel semi-normal!

Hope you start to feel better soon!

 
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Old 03-07-2011, 12:48 PM   #3
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Re: Your experience of starting medication

It does take time.....and patience.

I started levothyroxine in March of last year and added Cytomel in January of this year.....I'm still not sure whether or not my current doses are "it" but, I am sure of a few things.

Firstly, I've been able to identify my setpoints - the "place" within the ranges of FT4/FT3 normal at which I feel best....for me, it's the very top end of the range for both levels.

Secondly, it takes at least two weeks for a dose to start to "show its stuff" and, if symptoms return after another week or so, that's a good sign the dose is too low.

Unfortunately, we have to wait for our blood levels to reflect a change in dose and that takes 4-6 wks.

It can also take some time for the body to "re-set" itself with each dose adjustment. I believe it's appropriate to increase the dose if labs dictate.

I've had periods of time during which a dose "held me" for 2 months only to find I needed an increase.

I told my doctor that I wanted to get labs every 4 wks. to stay on top of things...in other words, adjust my dose if my levels start to move away from my setpoints - in the hopes of preventing the development of symptoms.

So far, so good.

The journey was long....but it was worth it.
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Last edited by cd37; 03-07-2011 at 12:50 PM. Reason: typos

 
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Old 03-08-2011, 03:06 PM   #4
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Re: Your experience of starting medication

Thank you both for your replies.

When I was told I was hypo by the doctor I was told it was fine and you take medication that will restore you and it has very few side effects.

The reality is different. Dosage, T3 info (here in the UK), how to take medication, this is all information found out later and much of it shared here.

The reality of taking T4, once I gradually accepted it would take months to get to a correct dosage, is that your symptoms get better, get worse, part of you gets better, other bits don't, then you can feel up or down or sideways, everyone is different. It's a bumpy journey. I really wish doctors would prepare their patients for that.

 
Old 03-08-2011, 03:12 PM   #5
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Re: Your experience of starting medication

Doctors don't seem to prepare patients in general....for anything.

A family member recently had sinus surgery. One week before the surgery, he was told for the first time that he would have to miss work for a week! He was also told he shouldn't have been taking stuff like aspirin, Vit E, etc. for two weeks before surgery....this again was one week before surgery.

This seems to be a universal problem, no matter where we live. Patients truly have to be their own health-care advocates. Sad state of affairs
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Dx'd Graves' June 2007..used ATD's, achieved remission Nov '09....went hypo Mar '10

Last edited by cd37; 03-08-2011 at 03:12 PM.

 
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