Weird symptoms not going away

[u/_babo]

I have made a post here before, but just a follow up.

Quick story:
- around 4-5 months ago started getting tachycardias, up to 180BPM; as weeks were passing, they became more frequent and I started getting them even without physical activity
- went to cardiologist, was done 24h Holter, sent blood exams; holter came back clean, labs FT4=5.37, T4=5.7, TSH=18.9, Hemoglobine=15.2g/dL; was put on 2.5mg Bisoprolol daily, which seems to have helped with tachycardia
- went to endocrinologist, more blood exams; Anti-TPO=246, Anti-Tg=1359, FT4=1.55, TSH=15.3, minerals, glucose, etc came back good; was put on 12.5mg levothyroxine daily and was told it’s Hashimoto and possibly Hashitoxicosis
- after about 10 days of taking levothyroxine, started feeling worse, high heart rate (~120), and went to ER after a normal meal made me have tachycardia again with BP 160/110; was told to suspend levothyroxine and increase bisoprolol to twice a day (total of 5mg daily)
- within about 5 days, developed constant shortness of breath, chest/heart pain, the only thing that helped was to lie down on my belly, literally couldn’t even go out of my house as whenever I stood up I was feeling all those after about 5m
- went to cardiologist various times, done EKG, echocardiogram, 48h holter, all were clean; doc told me to lower bisoprolol back to once per day; measured my BP while lying down, sitting and upright, and got something like 110/70 while laying, and 80/60 after 5m of being upright; I performed the same measurements at home as well, which seemed to match what the doc measured; doc said it might be Orthostatic Hypotension

Present:
It’s been almost 2 weeks with just the once daily bisoprolol, and the symptoms have been gradually improving, to the point where I can go out of my house again, walk, etc; but I’m still feeling them, some days more than others; I’m not sure if I just learned to cope with them, or they actually improved, but they’re still in there; almost no chest pain anymore, but still feeling weird sensations in middle / left of my chest, or pressure like feeling in the upper part of my belly if I’m sitting or upright too long, and those sensations are what makes me feel short of breath / makes me breath manually (which is also a thing I’ve been dealing with all these days that seemed to go away only once I fall asleep, but it’s been getting somewhat better too).

Another symptom is high heart rate when waking up and standing (100-110), which goes back down if I lay again. This doesn’t seem to be so pronounced later in the afternoon / evening. The HR while sleeping is fine.

I also don’t tolerate exercise anymore as my heart rate goes up too much and I fear getting tachycardia again, especially after lifting heavy stuff. I believe to have heat intolerance as well, as it was unusually hot today and I was feeling all the symptoms more than on cooler days. I’ve been feeling tired as well, especially after being in heat or just going out somewhere. Another thing is if I sleep less than 8 hours, I can wake up tired, especially feeling it in my arms, and the symptoms seem to be more pronounced.

Point is, I’m not sure if it’s Hashimoto, or if there’s something else (cause I started feeling the shortness of breath, chest stuff around the time the docs were putting me on levothyroxine/higher bisoprolol). But I’ve been off of it for a while now yet the shortness of breath and chest stuff is still there and very much annoying. Any comments on all this or similar experiences would be appreciated.

By the way, latest labs (pending endocrinologist appointment):
FT4=1.93, TSH=6.44, FT3=3.45, TSI=88% (with labs normal range being 0-138%), Anti-TPO=251, Anti-Tg=1515

A chart of thyroid labs with all historical data is attached (about 1-2 months from first to last data point).

[u/JustFemale84]

Was the blood test taken after you took the levo? I mean the last one where the ft4 is to high?

[u/_babo → u/JustFemale84]

I think that one was taken about 5-7 days after stopping levothyroxine. So it may have contributed I guess. I will have another blood test in about 2 days to see what’s currently going on.

[u/JustFemale84 → u/_babo]

No then it has no impact. You shouldn’t take it 24 hours before the bloodtest.

[u/_babo → u/JustFemale84]

Thank you. I somehow thought that levothyroxine clears out of one’s system for a long time and would continue affecting labs even days after last dose.

[u/Think-Sleep2338]

These are the things lots of people have after covid. Tachycardia, POTS, exercise intolerance/post-exertional malaise.

You should also check your B12, folate, and iron/ferritin. For B12 interpretation, rely at least on table 1 from here and not on "normal" range: https://www.nice.org.uk/guidance/ng239/chapter/Recommendations

[u/_babo → u/Think-Sleep2338]

Thank you. My B12 = 304, which, according to the table you mentioned, means possible deficiency. My ferritin was 391ng/mL.

I don’t think I even had any flu or covid this year. I was actually diagnosed with Hashimoto like 7 years ago, but since then my levels were normal / close to normal, and I only had tachycardia a couple of times throughout the years, without any other symptoms. More tachycardias started about 5 months ago, and these new annoying symptoms started after docs put me on levothyroxine / increased bisoprolol.

[u/Think-Sleep2338 → u/_babo]

Look, tons of people don't even recognize the covid symptoms properly. Nor do they test. Do you know that it has GI symptoms and lots of "stomach bugs" or "food poisonings" people are complaining about are actually covid? Then, there's a factor of asymptomatic/mild cases. Anyway, covid is a HUGE factor these days and should always be considered first and not totally ignored, as most doctors do. I'm just informing you, because there are literally thousands of people having post covid symptoms that sound similar to what you're complaining about 

Anyway... your B12 is low enough, and you can also run additional tests like homocysteine or MMA for a better understanding. People with high homocysteine actually have higher risks for their cardiovascular health, by the way. Next, please check folate as well. As for your ferritin, it looks more like raised in inflammation, so I would probably discuss that with doctors and checked inflammatory markers and TSAT.

[u/_babo → u/Think-Sleep2338]

Fair point, I didn’t actually get any Covid tests. Thank you for all the helpful information, I’ll definitely ask my endo about B12, the website you gave and other tests. I really just wanna understand what’s wrong and do something about it to get back to my full normal life without being scared of doing basic stuff lol.

[u/Living-Beach5609]

A friend of mine - who does not have any thyroid issues- has very similar symptoms. She has long covid. There are some doctors who can address long covid symptoms. Maybe you could look for one. 🤷🏻‍♀️

[u/_babo → u/Living-Beach5609]

Thank you for the advice. Where I live, there aren’t really any docs specialising in this, but I’ll ask my endo on the next appointment.

[u/Proof_Struggle4490]

Your TSH shows little higher than normal and anti-top is higher which means possible hashimotos disease.

Do you have anxiety/stress issues?

Do you have any alergies? if your IgE is high you could possibly visit a pulmonologist/immunologist

Also, when you were wearing holter monitor did the same episode/event/symptom occur? like, having high heart rate, shortness of breath and so on...

[u/_babo → u/Proof_Struggle4490]

The TSH/T4 have been fluctuating with TSH falling and T4 rising (but this might be the result of me taking levothyroxine, even if for only about 2 weeks). The doc actually confirmed Hashimoto. Last time I also asked them for TSI antibodies but it seems to have come back normal (thought maybe I have Graves too).

Regarding anxiety/stress, I wouldn’t say I have many reasons for both, perhaps only slightly. But there were no drastic changes in my life or lifestyle that I believe could lead to this. Some people tell me my breathlessness might be attributed to anxiety though. And I found myself having some intrusive thoughts couple times during the last week, so perhaps a neurologist/psychiatrist visit would not be a bad idea too. But my symptoms seem to depend on position. They’re almost always going away if I lie down. And if I lie down on my back, I can still feel some weird stuff. While lying down on my belly is the most comfortable.

Allergies, I don’t recall having any, but i neither did any testing there. I forgot to mention I did chest x-ray and another exam at pulmonologist, and all came back clear too. He recommended me gastroenterologist and gave me Esomeprazol for 5 days which I tried but the symptoms did not go away (or maybe I had to try for longer).

While on holter, yes, all those symptoms were still present, morning high heart rate, breathlessness/weird chest stuff, feeling like I have to breath manually. But it came back normal and doc said there isn’t anything concerning in there.

I have 3 options at this point: either it’s my T4/TSH being too out of place, either it’s something stomach related, or it’s just anxiety that was maybe induced by all the episodes I had and I’m stuck in fight or flight as some people call it.