do not know how else to describe what keeps happening….. I have seen endo, neuro & cardiologists about this. They all blame it on my PoTs (even though some are unaware what pots even is).
This is what keeps happening most days. My vision starts blurring, my body over heats and I start sweating, feel extremely dizzy, rushing feeling, extremely drowsey (can’t keep eyes open) and sick. I am confused and have slurred speech.
My pots specialist thinks it isn’t a pots symptom which is why he keeps referring to different departments. Then they keep blaming it on that.
These turns take a 10-20mins to pass. I am always sitting when this happens. Have to sleep after.
Just to add I do a heart monitor reading and a blood pressure and they are ok. Earlier heart rate was 70bpm with this episode. BP was 115/70 (which is pretty good for me).
The strangest thing is when I went on armour these funny turns stopped completely. I may have got the odd one but they vanished… which makes me think it must be thyroid related. I came off of armour and swapped to synthetics around 7 months ago and this is non stop again. Most days. I am due bloods in a few weeks. My levels are better at the moment than they ever were on armour. Although my t3 was good on armour always near top range.
I am wondering if anyone else has had this experience?
Also having all vits checked in a few weeks… t4,tsh,t3 and Reverse t3. Hopefully will give me an idea what is happening.
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Ajva
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Even tho many argue that synthetics and armour are the same, they aren’t and it may be that Armour suited your needs better. NDT and synthetic labs are not really comparable because NDT is much more signs and symptoms based than synthetics (altho signs and symptoms also massively matter with synthetics too). If Armour made the symptoms go away can you go back to it?
Also, what do you mean by your levels are better now than on armour but on armour your t3 was top of the range? What was your T3 then and your T3 now? Can you include more labs?
no I agree. Synthetics do not go down well for me. The issue I have with armour and NDT is my t3 goes over range and I get hyper symptoms when I go over 1 grain. So I add in levo, which works ok. But armour does give me more cardiac issues my BP is unstable on it and my heart races. But overall I feel better on it…. I am on heart meds so once I take them and they kick in my heart slows down. To be honest the way I have felt on synthetics the past 7 months. I am very close to moving back to armour. It does help many more symptoms.
Ajva, do you have your NDT labs? 1 grain to go over range is very unusual. I wonder if you’re actually going over range or if you have an adrenal issue that is stopping your tolerating the higher doses that you need?
in my own personal experience I got pots because of my adrenal issues, so it might be that they are playing a part here. How long after 1.25grains were these tests done? X
Tests were done 8 weeks after dose change of 1 1/4 grains. If I am on 1 grain (which I was for nearly 2 years) my t3 is 6.7. So I do know the NDT keeps my t3 high
hmmm, yes OK - that’s very interesting, I’ve never seen such a low dose give such high readings but that’s why it’s great to be on the forum - always learning! If I were in your situation and I’d had low t4, high t3 on NDT I’d probably lower my NDT by 0.25 and raise my T4 by 20mcg. Did you ever try doing NDT + T4? X
yes I did end up adding in 50mcg of tirisont levo to my NDT. It worked quite well but my Dr said I may as well just go on synthetics as I can play with doses. Now I regret it and wish I had stayed on it. I will give it a while longer and see if I can get bloods level. But if I don’t start seeing any improvements after a few more increases then I know what I need to do.
I only needed 1.25 grains to felt really well after years of suffering undiagnosed, then on Levothyroxine (120/125 mcg alternating) on which I felt utterly dire. I took 1.25 grains NDT successfully for about 5 years and then suddenly needed an increase, no idea why to this day. I’m on 1.75 now, if I take 2 it’s too much. So initially I didn’t need a lot of NDT but still felt really great and after decades of grot.
I am actually not on standard levo I take tirisont (levo) which I have to get privately, it costs me a fortune and I also take compounded t3 alongside it. But yes I feel dreadful and have done since coming off of armour. At the moment I am holding out for another blood test next week and after that I will decide whether to try and increase what I am on or go back to NDT.
This sounds like a vasovagal attack and I'm surprised your POTS specialist hasn't worked that out. It's part of dysautonomia and common of you have POTS. Do you have a specialist on the POTS UK list?
The last thyroid results you posted a few weeks ago showed your TSH above range so the vasovagal attacks will probably be more frequent and worse. Did you say you had increased Levo recently? This should improve once your FT3 level is better.
Where are your vitamin results? Really important to get and keep those OPTIMAL - ferritin, folate, B12 & D3.
yes my specialist is on the list. I actually see a pots specialist, blood pressure specialist and local cardiologist and no one has seemed to work this out. Thank you for finally explaining this to me. I am guessing this is being triggered by my levels being off. Yes have just increased levo from 100mcg to 125mcg and t3 I am on 5mcg currently. I am on tirisont brand of levo and compounded t3.
Have posted recent vits. since this blood test I have now been supplementing with vit D, pro biotics, iron, b12 (Thorne) brand. My iron was low so I am really trying to work on that by eating leafy greens, red meat etc. as I know this will help thyroid function.
I'm not rating your POTS specialist if they can't diagnose vasovagal attacks.
Low iron/ferritin with POTS is a nasty combination and will make heart rate issues a lot worse than they need to be. It will also make tolerance of thyroid hormones, in particular T3 a lot worse. Eating chicken livers and pate a few times a week is the recommended way of raising that. Well worth focussing on that.
Have you tried dietary changes? Are you gluten, dairy and soy free? Low carb can help some POTS symptoms too.
yes I agree. Maybe I was not explaining my episodes well to him. I never actually pass out with pots but feel like I am going to. It makes sense what you are explaining because everytime I have these attacks I am exposed to heat or I feel really hot. It happens in restaurants alot.
I will work on that iron I really need to get that up. Yes I am gluten free, dairy I eat minimal but I know that is my next thing to cut. I have low carb meals generally as high carbs makes my heart race. No wonder I can’t tolerate t3 well. Went from 10mg to 5mcg due to heart pounding and feeling so unwell. Although I did seem to tolerate NDT 1 grain (with 9.5mcg of t3).
Eating a large meal can bring on vasovagal syncope, I've been known to end up under the table in restaurants more times than I care to mention, very embarrassing!
Sort the ferritin out and you'll be able to tolerate higher doses of thyroid hormone which should really help all round.
the whole time I have been on synthetics all I want to do is go back on armour with the added t4. I have not had one day I have felt well in 7 months. I had some better weeks on armour where I had a good run then would crash. I seem to have every hypo symptom back even on the dose I am on. Armour really helped with many symptoms. I am having to eat every 2 hours otherwise I feel like I am going to faint.
Switching the type of thyroid hormone you take is going to mean being hypo and more symptoms for a prolonged period of time regardless if you are on NDT or Levo/t3. It's not a decision to be taken lightly. I don't think it's fair to say you've given synthetics a good run when only 2 weeks ago your TSH was above range. Now you're on the synthetics then at least give them a fair chance and get thyroid levels + all vitamins to OPTIMAL before you decide or even if you need to decide to do something else. The grass is always greener...
I have had two "funny turns" in the last month, exactly as you describe. The first symptom is my eyes not focusing, then dizzy, then a huge head sweat. I feel very sick, but am not, then the blackness starts creeping in round the edges. Both times I have not been doing anything, both times I just sat there, deep breathing and trying not to panic.
After it passed the first time, I got up and unlocked the front door, in case I needed an ambulance! In the end I put it down to a sudden drop in blood pressure. I take high bp tablets since the reaction to the second vax, but I no longer bother to say that to any GP as I am fed up with seeing the shutters come down instantly. Measurements of my BP show it is still high.
Trouble is, I am now worried to do anything very physical. I do a lot of physical stuff, heaving sheep, hay, muck etc around. My GP completely dismissed me when I told him about the funny turns. I dont have POTS, take NDT and vit etc levels are good.
I am sort of glad in a way it is not just me experiencing this. That is exactly it with my vision it goes like tunnel vision and black round the edges. Last week I lost my vision for 3 hours and had to call paramedics as I couldn’t see a thing but was conscious of what was going on around me. Right so that would make sense about your blood pressure, I didn’t mention above but I actually have orthostatic hypertension and intolerance. Where my BP jumps between 250/110 standing and sitting 80/30. I had autonomic testing done and my blood pressure spikes constantly. BUT it is untreatable as they can’t give me meds for high or low BP as it will make me have a stroke or I will have such low Bp I will faint.
Ooh, that sounds horrible - poor you! I was told to up the salt in my diet as I have a low salt diet (ex husband had to have a low salt diet, so I just carried on - turns out he has a swinging brick!). This is the exact opposite of the books tell you - high salt/high blood pressure. I did not change my diet.
I drink electrolytes all day but since this issue with blood pressure going too high the Cardiologist has told me to drink electrolytes with low sodium. At the moment I have a high salt diet which probably is not helping the high BP but helps the low.
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