Advice Needed: Please see my profile history... - Thyroid UK

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Advice Needed

LilLily profile image
15 Replies

Please see my profile history (rather than forcing you to read a longer post here :)) November 19th my TSH had come down to 37.2, that's 4.5 weeks from testing 151 on October 15th. The new results are attached and I even have some "normal" thyroid #s now.

I've had a very rough time with alternating the 75/100 and feel like I'm getting even more anxious instead of it letting up. I'd like to cut the 100s back to maybe 2 a week until I can tolerate it better. Right now I'm barely functional from the anxiety.

I would like your opinion and insight. I feel like I've come a long way in a short amount of time. But I also feel like I'm going up too quickly to tolerate the increases.

Thank you

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LilLily profile image
LilLily
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15 Replies
Lora7again profile image
Lora7again

You do really need an increase because your TSH is too high it should be around 1 or even lower. Mine is 0.70 and I feel great ... I am not on any medication because I am in remission from Graves' Have you tried NDT? I took it last year and purchased it from Thailand it is called Thyroid S and I ordered it on line at it took 9 days to arrive and the post office delivered it. The man who supplied it was recommended to me by someone on this site. Sometimes people with thyroid disease cannot tolerate Levothyroxine and get on better with NDT. It suited me and I didn't have any side effects. Anxiety is a symptom of being under active btw and once you get your levels right you will feel better.

LilLily profile image
LilLily in reply toLora7again

Thank you for your response. I did try Armour but I couldn't tolerate it.

Lalatoot profile image
Lalatoot

Lily I have been there with the anxiety. It is a symptom of being undermedicated. It is not caused by the levothyroxine. For years I kept my levo as low as possible because I blamed it for my symptoms. What in fact was happening was that I did not have enough thyroid hormones. What I lacked in thyroid hormones the body made up for with adrenalin. Hence the anxiety. I split my levo dose and take it twice during the day as this is how I tolerate it best. You do need to increase as your body needs the hormones your thyroid is struggling to produce.

LilLily profile image
LilLily in reply toLalatoot

Thank you for your response! :-)

LilLily profile image
LilLily in reply toLalatoot

That's the exact mindset that I've had, that it's the levo causing the anxiety. Thank you so much for telling me. It's made me look at this differently...and I've increased my dosage.

:)

Lalatoot profile image
Lalatoot in reply toLilLily

All the best with the increase.

Buddy195 profile image
Buddy195Administrator

I find it useful to use 12.5mcg Levothyroxine tablets when increasing my dosage, as I’m not great at splitting tablets, even with a pill cutter. My Endo recommended trying 5x days at a lower dose, then 2 with a 12.5 increase, then increase to 4x lower and x3 higher. I find increases affect both my anxiety and increase resting heart rate. Hope you manage to tolerate the increase LilLily, as you definitely need it.

LilLily profile image
LilLily in reply toBuddy195

Thank you for your response. :-)

I believe that's what I will do is the 5x on the lower dose and then 2 (say Tuesday and Friday) at the higher dose, and then on from there.

Tina_Maria profile image
Tina_Maria

Hi, your T3 is below the normal range, which means you are grossly under-medicated. The TSH is far too high and your T4 is at the very bottom of the range.

You should try to increase your thyroxine quite substantially. At least by 25mcg for now, then test after 6 weeks and you may need another increase or even two.

A low T3 level like yours will give you great anxieties and this will only get better when you are on a better therapeutic level of thyroxine, I would say its not the levo that gives you the anxiety, its the under-medication and especially the lack of T3.

Also, your heart muscle needs T3 to function properly, so your anxiety could be a cause of your heart not being able to have the correct cardiac output, which could actually mask as anxiety!

If you can manage to push through the anxiety and go up more quickly, that will benefit your anxiety levels. I hope your GP is supportive at least? Stay strong and good luck!

LilLily profile image
LilLily

Thank you for your response!! :-)

LunaMa profile image
LunaMa

Hi LilLily

I agree with everyone else’s comments about anxiety. I was only diagnosed hypo in March this year and have noticed that with each Levo dosage increase my anxiety gradually subsides, then starts increasing again when I need another increase.

The hormone imbalance provokes the ‘fight or flight’ response and I’ve found that reassuring myself that there isn’t a real threat - in the same way you would soothe a frightened child - really helps.

I hope you start to feel better soon x

LilLily profile image
LilLily in reply toLunaMa

Hi, I was just reading all the great answers I received. My anxiety issue happens the opposite way. When my dosage increases my anxiety gets worse. It's so frustrating and just doesn't make sense to me or anyone else. Thanks!

LunaMa profile image
LunaMa in reply toLilLily

I find it so interesting that we react in different ways. Good luck - hope you find what works for you x

LilLily profile image
LilLily

Thank you so much for your reply!

LilLily profile image
LilLily

I just wanted to thank you all for your responses. I've now increased my dosage and will do another increase next week. You've helped me see this in a totally different way, that it's the lack of thyroid hormone rather than the levothyroxine causing the anxiety. That's a game changer and I *greatly* appreciate it! <3

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