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Any thyroid folk around? (Change in medication)

(9 Posts)
EssentialHummus Thu 10-Dec-15 22:13:57

I have been on levothyroxine for 18 months now: first 25mg, then 50mg, then (after a recent blood test), up to 75mg. I don't have the test results to hand, but my GP basically showed me a graph that indicated that my levels (which levels I don't recall) were still above where they needed to be. I am still more sluggish etc than seems normal for me.

I've been on the 75mg dose for a month or so, and for the last four days have had heart palpitations, restlessness, anxiety - i.e. symptoms associated with too high a dose. I don't feel any less "foggy" - it seems like I have symptoms from both ends of the spectrum confused.

Has anyone had symptoms like this after increasing dosage, and were they temporary?

Would you stick with the higher dosage? I'm feeling so uncomfortable that I'm inclined to alternate 50/75 on consecutive days.

Pleasemrstweedie Fri 11-Dec-15 10:26:34

If you’re under 60 and have no signs of ischaemic heart disease, the modern thinking, and there is proper peer-reviewed research to back it up, is that 100mcg should be the starting dose, given that most people settle around the 125/150mcg mark. All the symptoms you describe can also be symptoms of under-replacement and I suspect that you need more thyroxine than you’re currently getting. For people who have no thyroid, the calculation is 1.6mcg of thyroxine per kilo of body weight. It might be interesting to do that calculation and see where it takes you.

Alternatively, you may not be converting the T4 you are taking, but you’d need your FT4 and FT3 testing to show that, or your vits and mins are not up to scratch. Have you had ferritin, vitamin B12 and folate and vitamin D checked?

It’s a good idea to get into the habit of getting a copy of your results, with the reference ranges, so you can plot how you feel against the figures, which are useful, but not the be all and end all of it.

thedevilinmyshoes Fri 11-Dec-15 10:29:29

I don't know about levothyroxine but I have hyperthyroidism (treated with carbimazole) and just wanted to confirm that mental fog and exhaustion are part of this end of the spectrum too!

EssentialHummus Fri 11-Dec-15 11:10:19

Thank you both. Please - by your calculation I should be on a 100mcg. I am 30 y.o and weigh 60-65kg.

I will get a copy of the latest results as you suggest - I was on top of this when I was first diagnosed, and need to get back to it. I have read a bit to suggest that the issue may be T4 not being converted, but I think that's one to take up with an endo if things don't improve.

devil - delightful that the symptoms are so... consistent, isn't it? confused

Clarella Fri 11-Dec-15 15:30:19

It would be easier to tell if you knew your exact results, it's really helpful to start regularly recording these.

An endo/ professor near me handed out sheets at a British thyroid foundation meeting asking us to keep a record of muscle strength, brain power and energy levels next to our dose and tsh/ t4 results. It's useful to have.

Any dose changes on t4 takes really about 3 months to be fully felt in the body and fully assessable. I can get funny symptoms as you describe if not on enough. If on too much I just don't sleep! It's taken 6 months for me to feel better after a stint of too little then too much and being very ill with it. I'd definitely say my body went through funny phases where I felt hyper etc despite all ok. I have actually put it down to other metabolic changes which can be affected.

I'd heartily recommend getting the book linked below as it explains best results and why.

But keep talking to your GP. 75 might be the right dose for now, however it's very likely you will end up on more.

(Just to check - you have hypothyroidism or all thyroid removed? Not some thyroid removed?)

Clarella Fri 11-Dec-15 15:31:18

Clarella Fri 11-Dec-15 15:33:04

I would also agree you should get your vit d, ferritin, b12 etc checked too.

I was slightly low in ferritin at 50 (not much) and a raise to over 100 made a huge difference. I take extra bit d and b12, though the b12 was fine. Seemed impossible to get folate checked!

EssentialHummus Fri 11-Dec-15 15:39:20

Thanks Clarella - I'm looking at that book now.

It sounds like some of the heart palpitations etc may be down to my body adjusting.

Clarella Fri 11-Dec-15 21:52:39

There's no harm mentioning it to GP and maybe you should check in with them about this but I'm often wary of then not then being on a good dose of thyroxine.

Tsh should be in lower range (as says in book) and t4 upper.

Ideally t3 etc would be tested but it's hard to get this done. Tsh and t4 are more slow moving stable indicators though don't show exactly what is happening at a cellular t3 level.

It takes a while for the body to fully heal. Thyroid stuff affects muscle either way. People think it just makes you fat, this is really sad as it hides the true disability behind it. The heart is a muscle and so can be affected.

I was on quite high doses of thyroxine and rarely had palpitations, far more palpitations had on too little.

You really need to take charge of your meds and results to a age your condition, a little like a diabetic does.

For future info, medication can be fine tuned eg I am great at 125 /150 alternate days and when doing regular exercise. I haven't gone down the t3 route as if I do this I feel great. However it takes a while for me to get to that point, building up slowly and o have to be careful to maintain it all, after any slump, which happened post baby.

<realises hasn't taken meds>

The book is also good as lists meds that interact with thyroxine. I became quite ill as was put on sertaline which messes with it. Discovered via Google and that book; wasn't listed in medication leaflet or highlights by GP.

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