Still a bit confused: Hi all.I have been posting... - Thyroid UK

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Still a bit confused

Shredder profile image
7 Replies

Hi all.I have been posting on here for nearly a year now since radio iodine treatment left me underactive and my doctor / endo put me on levothyroxine. I am a male in the U.K and have been put on ever increasing doses of levo (now between 125 and 150 mcg. I didn't react well at all to the Levo, it gave me awful itching plus the most debilitating insomnia ever (so bad I had to take days off work because of it and even sleeping pills wouldn't work!) and also my weight kept increasing even though I was told it would return to the pre thyroid stage when my thyroid had normalised. Such was my reaction to Levo I begged my GP to let me try NDT. He was very good and initially I tried Armour and then Naturethroid, finally finding WP Thyroid which suited me well as my sleep patterns have returned but the excess weight is still a problem. Unfortunately WP isn't being manufactured at the moment so in desperation I tried NP Thyroid but it gave me the same symptoms as the Levo. I have manage to source Liothyronine (Tiromel) 25mcg and have been taking this along with 50 mcg levo which has helped improve sleep quality but the weight isn't shifting despite either fasting, strict dieting, eating as normal, exercising vigorously or cutting back on the exercise. In my last post someone kindly told me where I could buy Naturethroid from without a prescription from the USA. I would obviously prefer WP but would like to try Naturethroid alongside the Liothyronine to see if I get better results. Can anyone advise me if I am doing things correctly as currently the only answers I get are on this forum but I do feel that I am using my body as a science experiment.

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7 Replies
Catseyes235 profile image
Catseyes235

Always a good idea to post your latest blood test results as it's the only way to check if getting enough thyroxine. Until you get back to 'normality' you can feel like you are part of an experiment! I used to feel Like my head was in a goldfish bowl looking out. Sadly a year isn't always long enough to get ' 'balanced' and weight gain and sleeplessness (despite tiredness) sound like you may still be hypo. Also men often take higher dose thyroxine. My brother takes 200 mcg. Good luck.

Shredder profile image
Shredder in reply to Catseyes235

Thanks for replying.

trelemorele profile image
trelemorele

You should do what's best for you.

A lot of people on here either experiment on themself or self medicate or both. I'd advise you to read some older posts on healthunlocked, you'll find a lot of answers to your question

There is a lot of fear implanted in public 're T3. From my experience - nothing to be afraid of.

If you know hyper and hypo symptoms, best - if you ever experienced them - you will know what to look for when self medicating.

You can mix natural thyroid formulation with t3.

Shredder profile image
Shredder in reply to trelemorele

Silly question but can you have hyper and hypo symptoms at the same time?

trelemorele profile image
trelemorele in reply to Shredder

No you can't. You're either hypo or hyper.

But few symptoms of hypo and hyper are similar

I.e palpitations, headaches, chest heaviness, unable to fall asleep... there's more, I don't recall at the moment so it's easy to mistake when you get them and are novice to that. Don't panic though!

Most significant difference between hypo and hyper I've noticed on myself:

Hypo - cold hands, feeling cold in higher temperatures I.e 22C,

Hyper - hot palms and/or hands tremor

Hypo - tired, sleepy in early evening, during the day, cold feet during the night, can't fall asleep due to low body temp, indigestion for up to 5h and bloating

Hyper - insomnia, can stay alert long hours, getting hungry very quick

Hypo - tired and breathless walking two flights of stairs, chest heaviness, tired during short walk

Hyper - faster heart beat than normal, feeling hotter than it should I.e. temp 20c I'm in short sleeve sweating doing some simple house chores

You should read comprehensive and detailed symptoms for both as everybody is different how they experience and there is plenty more. I don't recall all at the moment.

AlasdairM profile image
AlasdairM

Hi -

Bearing in mind that we can only give indications of what might work for each individual...

Itchiness could simply be a sign that your skin was 'recovering' and in my case diminished, but lasted for many months.

Fasting slows the body, so you burn less calories. Moderate regular exercise and watch out for 'empty calories', avoid processed, sugary foods. Your 'lean' body weight is what needs to be fed and what needs Thyroid. Personally I have to keep consumption between minimum of 1600 kcal and max 2000kcal, else I feel fatigued (below 1600) and weight fluctuates. I'm average height male, 55-60yrs. FitBit site or other sites/apps are useful for keeping short-term food diary, to see what your overall intake is like.

Be patient re weight loss, find a pattern of eating which you can keep to. It took me 3+ years to shift a 20% weight gain, but weight has been stable for 5 years on combo Levo + Lio

Its really important to post recent blood test results - you have right to these from GP, just don't explain reason to surgery secretaries? People here can then have better idea of how close your are to what your body might need. Also you should expect 6-8 weeks for result of any change to settle down.

I would suggest trying 75mcg Lev (last thing at night and at least 2 hours after any food, 3 hours if meat-based meal - aiming for empty stomach before taking.)

Then try dividing your 25mcg Lio dosage (which is more readily absorbed, acts faster, but is lost in urine.) First dosage upon waking, with normal advisories; should wait before food, including 60min before any milky drinks. So I cool fresh coffee with cold water @ 30 mins after a.m. Lio.

When to take second dose of Lio is a try-and-see what suits. It can be like throwing petrol on a fire - it may flare-up but last shorter time, before you run out of 'steam'.. Try early, light lunch, then 2-2.5 hour gap to Lio second half of dose.

E.g. when I know that I need to be alert, drive in the evening, I delay the second dose to 4 hours after lunch, again on empty stomach. But I'm accepting that I will have 'bad' period during the afternoon and feel hungry.

Liothyronine-sodium can cause your body to over-react initially, if you were hypo before introducing it. If you have some Hyper symptoms during short periods of the day, then first try skipping the second Lio dose on alternative days, rather than change dosage.

A blood test including Free-T3 ( and yes the NHS do it, written on form in "Other Test" box) is important - try for one in about two months.

When taking natural thyroid (NDT)of any form / origin, remember that is is a source of both Levo T4 and T3 Lio, so you may need to adjust dosage of Lio. A more usual use of NDT is combo of 1xLevo + twice daily of NDT, i.e. base of T4, with T3, then NDT top-up later providing T4+T3.

Hope you find some of the above useful.

(NDT is dessicated Thyroid gland, usually porcine. And hence being 'natural', there will be some variability in what actually reaches your blood.)

Shredder profile image
Shredder

Thanks for the reply. Sadly I don't get on well with Levo over 50 mcg as it gives me awful insomnia and the only NDT i can tolerate is wp thyroid as it has had a positive effect on my sleep but it isn't being produced at the moment owing to 're location.

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