Impatient Patient feeling anxious 😬

[MsWhistledown]

Hello lovely people. Hope you’re having a good week.

I’m day 12 into taking 25mcg of levothyroxine and honestly feeling worse. I seem to be a lot more anxious than I normally am, it’s a kind of unexplainable anxiousness. My legs, ankles and feet get tired and sore very quickly and my ankles seem to swell up very quickly after walking now. All new to me, I was always a walker/hiker and had no issues with my legs/feet even after 8-10 mile hikes. Now I can’t walk for much more than 45 minutes with out aching and standing starts to hurt very quickly. Brain fog is still pretty awful, hair is falling away a lot. I have been signed off work for 3 weeks and this has made me anxious, why I don’t know, because I really do need a rest while the meds start to work. But I am so used to being at work and doing things that sitting down is not easy for me.

Please tell me I will soon start to feel myself again?

I know my Ferritin levels are low so that isn’t helping. Spoke to GP yesterday and they said my iron levels and vitamin levels are fine! They won’t increase to 50mcg levothyroxine for another 4 weeks after doing blood test. Feels like this is all being dragged out when it could be sorted out sooner!

Silly question but I am still trying to get my head around all this. My TPO antibodies were very high so does this mean that I am currently having an autoimmune attack and this is why I feel so crappy?

I do feel quite alone. Family and friends keep asking me everyday if I feel better like taking the medication has suddenly made me feel better overnight and I am on a repeat loop of saying no I still feel exhausted and unwell.

Rant over - thanks for reading. Any advice appreciated as always 😊

[HeartWoman]

I am so sorry you are feelimg so ill. All of us have been where you are and many are still working on feeling much better, including myself. Unfortunately thyroid issues take a long time to sort out. It is very frustrating and takes a lot of patience.

I was also started on 25mcg and actually felt worse. I just finished 2 weeks on 100mcg and still don't feel very well, but have to wait it out until the next bloodwork.

I hope your doctor continues to work with you and helps you find the dose that makes you feel much better and not just stop when you are "in range".

[MsWhistledown in reply to HeartWoman]

Thank you HeartWoman, I really appreciate your reply and experience. I hope you feel better soon. Are you feeling any better now in comparison to the start of your journey?

[HeartWoman in reply to MsWhistledown]

It is pretty up and down right now. I will have a few good days and think I am finally on my way to where I feel like me and then things unravel a bit. So that is frustrating. My body is still adjusting to the new dose, so it is hard to tease out what are actually a hypo symptoms and what is part of the adjustment to the dose increase. The brain fog is better, but I am still very tired. I can get very emotional for no reason at all and I was never an emotional person. I am really hoping things level out in the next few weeks. I used to be such a happy person, but I don't smile much right now.

The only thing I know to do is hang in there and hope things level out soon.

[MsWhistledown in reply to HeartWoman]

I’m sorry to hear you have had a difficult time. Like you said hang on in there and things will get better soon once you find the right dose. It really is a waiting game. Something I will have to get used to. 😊

[HeartWoman]

Was there a reason you were started on 25mcg? I was started that low too and I have no idea why. It has only prolonged us feeling unwell.

[MsWhistledown in reply to HeartWoman]

No reason given. Just the Dr at the time felt that was best. I have asked for increase but won’t give it to me yet. I just get the feeling they have very limited knowledge of thyroid diseases. It took me months and months to get an actual diagnosis so I don’t have a lot of faith in them. Yes I think this is why we feel worse and are suffering for longer than necessary. I’m 43 not pregnant and have no other conditions so going by advice on here I should have been started on 50mcg. How about you? Any reason for them starting you on a low dose?

[HeartWoman]

Not that I know of...I should have pushed harder, but was trying to trust the endo. I have a new doctor and he checks the Free T4 and Free T3. He increased my dose from 75mcg to 100mcg two weeks ago, so I am in the hurry up and wait phase. I hope I am getting closer. The fatigue is the symptom that bothers me the most. I can handle being chubby, brittle nails, etc., but the tired feeling and mood stuff has got to go.

[MsWhistledown in reply to HeartWoman]

Sounds like your new doctor is doing a better job. Fingers crossed it won’t be long until you feel more yourself again. Yes the fatigue is awful, the brain fog and just the loss of having that zest for life. I miss that.

[HeartWoman]

I felt anxious when I was where you are. That has gotten much better. It isn't perfect yet, but definitely better.

[MsWhistledown in reply to HeartWoman]

that’s good to know. We will get there! 😀

[HeartWoman in reply to MsWhistledown]

Today, I have so much muscle pain. I hope it is part of adjusting to the increased dose 2 weeks ago. So frustrated! I just want to take my thyroid dose and get on with my life.

[MsWhistledown in reply to HeartWoman]

I hope the pain settles down soon. It is not easy.

[HeartWoman in reply to MsWhistledown]

How are you doing today? I feel so weak and tired. I am very emotional too.

[MsWhistledown in reply to HeartWoman]

Sorry to hear this. The tiredness compounds the emotional and anxious feelings I think. I hope you are able to rest up?

I am tired as hell. I didn’t sleep much at all last night. Insomnia is one of my worst symptoms. Anxiety was pretty bad as well. My legs are a little better not as achy as they were last night.

[HeartWoman in reply to MsWhistledown]

My insomnia has improved and I don't think I am anxious. I feel physically and emotionally drained. I don't know what I can do but wait it out. I get concerned I am on too much, but won't know until I test in 4 weeks.

[MsWhistledown in reply to HeartWoman]

it is a waiting game. It’s horrible feeling that way hopefully you’ll get some answers in 4 weeks.

[serenfach]

One of the worst things about this disease is the length of time between a new dose and your body feeling better. Its not like a pain killer where the effects can be felt in half an hour. Think long term - your body will adjust to having the hormones it needs, it as if there is an inbuilt lag for some reason, and it just all takes time. Very frustrating, but that is just how it is.

Not doing your normal routine work can make you feel anxious - it does me, as I am constantly thinking what I should be doing, and then not being able to do it.

You will get there, but I am afraid it is little steps to get there. Hug.

[MsWhistledown in reply to serenfach]

Thank you serenfach, it is good to know there is light at the end of the tunnel. Even though it might be a long tunnel lol. Yep I think you’re right about normal routine. That’s exactly what I’ve been doing. Thinking too much about what I should be doing. Need to distract myself.

[Gingernut44]

I’m so sorry you have an idiot for a doctor. At your age with no other health problems, especially with high antibodies, you should definitely have been started on 50 mcg. He is only prolonging the agony. Perhaps you should present him with the NICE Guidelines for starting Levothyroxine.

[MsWhistledown in reply to Gingernut44]

Thank you Gingernut44, I agree with you. The amount of doctors I have seen who have been useless at even diagnosing me, I am not surprised they can’t get the meds dosage right. The doctor that finally sent me for the TPO testing of my thyroid was the one that said my thyroid would not be causing all the symptoms I am having! Then results came back showing them as very high and elevated TSH. You couldn’t make it up. I wonder if they actually know what they’re doing?! I have just registered with a new doctors surgery and will be having an appointment with them soon. I just hope to God they are better than the lot at my last surgery. I will be quoting NICE guidelines at them.

[HeartWoman in reply to MsWhistledown]

I have seen a plethora or doctors too that have been useless. I am in the U.S., so it seems to not be much better here.

[MsWhistledown in reply to HeartWoman]

seems this condition is not taken as seriously as it should be.

[Gingernut44]

We’ll done, I wish you 🍀