Breathless

[Purpleprincess1963]

Hi ladies

Has anyone had breathlessness with underactive thyroid? I have been on Levothyroxine 4 and a half months only on 25mc at moment and have a appointment next month with a endocrinologist is this because my medication is to low ? Really appreciate any replies as I am so worried about this horrible feeling xx

[thyroidmom84]

Yes, I definitely get this. I recently found out my ferritin is very low which happens a lot with Hashimoto’s and is a possible cause. Have you had your’s checked recently?

[Purpleprincess1963 in reply to thyroidmom84]

Not had anything checked I have a appointment in January with a endocrinologist so going to ask loads of questions then

Thanks for your reply x

[humanbean]

I would suggest that your Levo dose is too low and you need an immediate 25mcg increase in dosage, followed by thorough testing in 6 - 8 weeks.

I would also suggest your iron and ferritin levels are likely to be too low. The same could be true of your vitamin B12 and folate. You'd need to be tested for all these before supplementing anything, because supplementing iron without iron deficiency is rarely, if ever, a good idea. And supplementing B12 and folate could make it impossible to test for Pernicious Anaemia, if such a condition was suspected.

[Purpleprincess1963]

Hi humanbean I did think Levo dose was low and I have just got a appointment for this evening I am going away Christmas and don’t want to feel like this ,I am going to ask if I can take half of extra tablet if I can , my appointment for endo is beginning of January I just need to get all this sorted it’s worrying when you don’t understand what’s going on with your body,

Thanks so much for advice.

[humanbean]

It might be worth waiting to increase until after you've seen your endo. It can take 6 - 8 weeks for thyroid function test results to stabilise (as much as they ever do) after a change in dose. You don't want your endo to be making decisions based on results from when things were in the process of changing.

Edit : What I think is shocking is that you have been left for 4 and a half months without any further testing and without anyone determining if your dose was right for you. 25mcg is an infant's dose, or the dose of an elderly person with rampant heart disease.

[Purpleprincess1963 in reply to humanbean]

Ok thank you, I am going doctors now see what they say 😞wouldn’t be so bad if I wasn’t going away but to be in another country and feeling like this is just a bit worrying thanks for taking the time to reply

happy Christmas 🎄

[humanbean in reply to Purpleprincess1963]

Perhaps you could buy yourself some Levo in the country you are going to. In some countries it is available over the counter. If you feel so terrible that going abroad is too much to cope with then, in your shoes, I would risk the testing being screwed up and increase to 50mcg per day.

[humanbean]

You might want to show your endo this link if they refuse to raise your dose :

nice.org.uk/guidance/ng145/...

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

To see all the guidelines on hypothyroidism :

nice.org.uk/guidance/ng145/...

and read this too - the new guidelines haven't been popular with patients to put it mildly :

healthunlocked.com/thyroidu...

[Batty1]

In my experience I get breathless when my medication is to low but if you ask my Endos about breathlessness and look at my labs he says I'm hyper ...however drop my dose down it gets worse not better.

[GardenerSue]

A 25mcg dose of LT4 is low. Doses should be increased in 25mcg steps until you feel well. You should also have your vitamin D level checked as it is common to have low levels of this when you have hypothyroidism. My ferritin levels are actually too high! Good luck when you see the endocrinologist and don’t be fobbed off!

[Purpleprincess1963 in reply to GardenerSue]

Thanks definitely won’t be fobbed off I am on a mission to get this sorted 😁

[GardenerSue in reply to Purpleprincess1963]

Be strong! I ended up seeing a private Dr to have my medication changed. Now on NDT and recovering.

[jgelliss in reply to GardenerSue]

You mentioned high ferritin levels . High ferritin levels can come from fatty liver or some kind of inflammation going on .