I posted earlier about sudden and vicious fatigue well now I'm having low pulse rate and Aniexty that seems to disappear once my pulse comes back up.
59 (pulse rate) aniexty and could no longer stay in bed and notice slow decline of pulse since thyroid med change 8 weeks ago, I did mention this to the Endo 2 weeks ago because I almost past out and my pulse at that time was low 50s and he said he only worries about low pulse below 50.
I never had this issue prior.
75 (pulse rate) after getting up and moving a little bit, aniexty alleviated after coffee.
Did Thyroid panel yesterday (no results yet)
8 weeks on 88mcg synthyroid and 10mg cytomel ...been feeling good until severe and sudden fatigue and now low pulse/aniexty.
I had 6 vials of blood taken yesterday could this cause my just now low pulse/aniexty issues?
Could this low pulse rate plus aniexty and the recent sudden fatigue be something more sinister at play or simply the medication change catching up? I'm thinking to call Endo but my results are not yet available to him or me and seriously don't think my test are going to show any new revelations, except I'm sure the TSH will still be low and "yes" TSH is not the best test but what's a girl to do when your at the hands of doctors that dont care what I think as far as thyroid test are concerned. He also tested me for (FT3,FT4,T3 and T4) as well as TSH however he's only going to look at TSH unless he decides to amaze me but I'm doubting that.
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Batty1
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Hi Batty1, I finally had a chance to look back over your ThyroidUK posts over the past two years. Reading them made me pretty angry and also sad. I think you've had really awful care after your TT, and that almost anything would be better. Is it an option to leave your current doctor and try someone new?
The biggest thing that bothers me is you've been kept on a pretty stable dose for the full two years. First on T4+T3, then NDT, and recently changed back to T4+T3 again. But it seems like in all that time you haven't had a dose increase or tune up. It's always been swapping over to a very similar total amount of hormone, with the recent change a decrease roughly equivalent to 20mcg of T4/5mcg of T3.
In all the results you've had freeT3 below halfway, most of the time at the very bottom of the range. You've been unlucky with TSH, because your TSH has been fairly low even when your hormones are also low. Your doctors are probably only looking at TSH, which is the reason you haven't had an increase.
Your current dose is different/worse than when you were on the NDT in 3 different ways, so this is probably why you're feeling worse:
- Overall, this is the lowest dose you've mentioned on the forum.
- As well as being lower overall all, this is a reduction in T3 fron your previous dose. Two grains of NDT contain 18mcg of T3, and now you're taking 10mcg
- You're now on synthetics and not dedicated thyroid, which contains thyroid hormone bound more naturally in other hormone, as well as T2, T1, calcitonin, and who knows what other magic. Not everyone needs these things, but I have no thyroid and NDT felt very very different for me.
One or a combination of these things might be affecting you, depending on your sensitivities.
Have you considered self medicating? I also had no thyroid and in the end had to start buying my own, because doctors just weren't a help. Mine weren't as awful as yours, though, because I did at least get to tune my dose a little and get my freeT3 high in range. I think you need to do whatever you need to do to get that freeT3 high, probably a few raises of 5mcg at a time of T3.
Vitamins also look like they need work, I saw vitamin D and ferritin that were very low. These need to be good for thyroid hormone to work properly. But it's also a vicious cycle because being hypo trashes our vitamins.
You're in such a hard position. It's horrible relying on doctors when they do not care about our quality of life
Yes, your correct my healthcare has been awful and I have seen and outside Endo that cost me $400.00 for a 30 minute google search (You read that right) she googled Armour Thyroid for 30minutes and she came highly recommended and left me as empty as when I went I to see her.
My current Endo is new to me actually a different practice/hospital same rules and regulations though and I Did welcomed the reduction/change of meds because I was having too many shaking episodes no matter how I split my dose my hands would rattle non-stop and sometimes random (no palps).
I also need to mention I do have other health issues besides the missing thyroid I have Psoriatic Arthritis that I inject a biologic monthly and I swear this drug messes with my lab numbers as you said all my numbers have been low and I have always been on a immunosuppressive drug. I think that what the Endo sees on the blood test is not correct because I think this immunosuppressive drug does stuff.
These 2 recent episodes of extreme jell-o like fatigue and then this low pulse rate, I have actually felt good and for the first time in 3 yrs I can move a lot more WITHOUT being house bound for 2 days afterwards due to the extreme pain.
I'm just worried that something else could be wrong because I also had this chronic cough for 5 months now that comes and goes and gets so bad at times It makes me throw up, I had breathing test and chest xray both clear. Seeing ENT soon.
Private doctors are often just as bad. I've seen three different ones, and each of them either did nothing for me or just moved me one step. I think if there's anything at all complicated in our situstion they do very little.
It may be possible that your tests are being spoiled by other drugs. It can also be quite confusing working just from symptoms to know if you're under or overmedicated. Sometimes being very undermedicated can give symptoms that seem like overmedication, being shaky and restless, palpitations, etc.
One thing that can be useful is taking pulse and temperature every day, as then you have a somewhat objective measure of symptoms. If you have a friend or medic to help you you could try to see the ankle reflex - this is one of the most specific symptoms for being hypothyroid. I will dig a link up for you in a minute.
If you feel better on this dose than previous I ones I would trust that, as symptoms are more important than blood tests or anything else, really.
Hey, Would this work if I have Psoriatic Arthritis in my tendons of both feet,knees and hip? I have Enthesitis
I'm gonna try the butter knife it will be interesting since I can't bend ankles they are pretty much locked in place because of psoriatic arthritis flare.
My understanding of it (altho I don't know very much) is that the important part is when the ankle moves back into its resting position. It's muscles being slow to relax that characterises hypothyroid.
Which explain why we get tight painful muscles or feel like our body is still as a board when lying in bed and won't sink down into the mattress.
I'm glad you got to do the test! I've never found anyone interested in helping me do it!
Lol, I will do just about anything to make my issues disappear, sadly so far no luck....Maybe me telling my Endo he's going to kill me everytime I see or talk to him might make him worry enough to deal with my issues that didn't start until after I lost my thyroid....for some reason EVERY doctor glazes past the glaring obvious that these issue didn't exist until that thyroidectomy and almost immediately after...and that's because they didn't even start me on thyroid meds until 2 weeks after surgery and by that time my TSH was 20 and took 8 weeks to come down to 4.75 and Ive been so low ever since... I would rather had taken my chances with cancer because as it is now I'm worse off health wise.
Waiting two weeks to start is awful I ended up stuck on 20mcg of T3 and nothing else for ages after my TT. It made me quite prejudiced against T3 for a while, because it was easier to believe it was it that made me so sick rather than the idiot doctors. I'm sure all this big disruption to hormone contribute to us feeling unwell long term.
I also think I might have taken my chances with cancer. Or at least just monitored it. Its 6 years since my TT and I've been in bed most of that time. Whereas 6 years isn't too long in thyroid cancer terms because it is very slow growing.
I think you should seriously consider self medicating. If you feel that your blood tests are being distorted by other medication, it would be good to have the freedom to experiment a lot and confirm that is true. I think if I was in your position with those blood tests and concerns about the blood tests, the first thing I would want to do would be to fully experiment with assuming the blood tests are correct...
...move yourself in that direction at a slow pace, adjusting every 6 weeks, and just see what happens. Get loads of good data, symptom notes etc. And then only once you get into trouble that way do you need to try the next thing.
I like to be very systematic, and assuming the tests are correct is always my starting point. Just because it makes logical sense, and you can always roll things back if something bad happens. Unfortunately doctors are very unsystematic
Yes, eventually I will experiment but right now I have to see if I'm having a recurrence of thyroid cancer I'm scheduled next month for radiation iodine scan with thyrogren injection and just learnt yesterday that my mammogram also show upper area lymph node issues....I still say all my lymph node problems are from having chronic inflammation for 3 yrs and not being treated for psoriatic arthritis and your CORRECT hormones being disruptive is absolutley a lot of my problems.
I forgot...I also have sleep apnea now and been on cpap machine for a month and half .....WORSE MONTH IN HALF EVER ....nothing like feeling as if your suffocating every night. I sleep less now then before the machine and this is the doctors solution to my ridiculously humongous weight gain over these past 3 yrs and my chronic fatigue. ...because nothing can be because of hormones or chronic pain..
Sleep Dr. Today said wear your mask for at least 4 hours a night....told her never gonna happen I'm having too many issues...Its a scam these cpaps but I'm sure some ppl really need one...just annoying now I'm on my 3rd mask ..first one killed my mouth (numb) gums I've never had numb gums that didn't involve a dental needle and 2nd mask leaked into my eyes (I have dry eye syndrome) and this leaking cause migraine for 2 days....third mask not sure yet but I'm predicting ....it's gonna suck. Lol
Oh my goodness! What a hard time you're having They are really putting you through the mill, and it is so terrifying that a lot of things could have been prevented if they just treated your primary illnesses properly
Don't forget to be kind and gentle with yourself during this difficult time. You are right in the middle of the whirlwind now, just do whatever you need to do to cope xx
Hi Batty1! Sounds like you are having a devil of a time right now. I’m so sorry 😐 that you are feeling so unwell. The fear of not being able to be helped is one I’ve often felt. The anxiety is there but please pamper yourself. You deserve to find an answer even though you might like what the doctors tell you. My prayers are with you today. xxx
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