Yet again I am at the end of my tether with continuing symptoms. I have hashis and over the last month I have started to get horrible panic attacks in the night. the first time it happened I woke up around 3am and found that my heart was pounding and racing - this triggered the most terrifying panic attack I've ever had. I thought I was having a heart attack and had to call my mum over in the middle of the night! 5 days before I had caved in and agreed to start antidepressants (I have been under constant pressure from my GP to do this for ages and have always resisted, feeling sure that my symptoms were thyroid related) so I put this down to a side effect of these and stopped them immediately. Things seemed better and then 2 weeks later it happened again - this time I managed to hold off complete panic by controlling my breathing but still suffered an uncomfortable sleepless night and felt awful the next day. This time I put it down to hormones....
But, over the last week or so things have got progressively worse. It seems as soon as I lie down in bed my heart starts pounding and beating faster. I am managing it just about but often I am unable to prevent further panic symptoms - shaking legs, nausea etc., and I'm missing out on sleep which is making me feel even worse. In general I feel horrible - I seem to have aches and pains around the upper left side of my chest and a horrible 'jittery' feeling around my heart. I cannot relax.
I was beginning to think I had swung over into being hyper but this morning I've received a letter from my endo with the results of a bunch of blood tests I had a fortnight ago:
My TSH was 9.9 (ref 0.27 - 4.20)
B12 was low at 185pg/mL (no ref ranges - folate normal at 6.2ng/mL)
Ferritin normal at 71ug/L
9am Cortisol was 410nmol/L
negative celiac screen
Endo has suggested my gp start me on B12 injections and increase my thyroxine by 25mcg ( I'm currently on 50mcg levo + 10mcg T3) I'm going to try and make an emergency appointment with my GP tomorrow.
It looks like I'm hypo at the moment and I'm wondering whether this plus the low B12 could be causing these symptoms? Or is it thyroiditis? Any thoughts would be very welcome.............
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nicolajane
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I have suffered panic attacks and palpitations for 7 years after a drop of my Levo from 150 to 100. Then I began to increase the Levo and they lessened but did not go away completely.
After a complete rethink courtesy of the lovely Dr BDP, I am treating my adrenals (Nutri-Adrenal) and addressing my Vit D deficiency, plus a gradual changeover from T4 to T3. At the moment I am on 50mcg T4 and 31.25 of T3. (Equivalent of about 125 T4) If I start to feel over-medicated as I increase the NutriAdrenal, I will reduce the T4 rather than the T3. So far everything he said would happen has happened, and best of all my panic attacks and palpitations are almost - not completely - a thing of the past. I am amazed.
I know that sometimes palpitations can be a sign of over-treatment but usually it is more constant rather than in sudden attacks. I am not suggesting you go ahead and increase your Levo without your GP, but that you bear in mind the possible cause COULD be the need for more medication.
See how you feel once you start to get the B12 up, and another thing to look at is Vitamin D, so many are deficient in this country with increased use of sunscreens or avoiding the sun altogether.
I do hope you will soon start to see a reduction in the panic attacks, it is horrible. I hardly went out of the house for almost a year because I got the panic attacks - often accompanied by an almost uncontrollable urge to use the toilet.
Yes, I've been working with Dr P too but have tried to keep onside with the NHS too if you know what I mean. It's all got really complicated - after the first 3 months of Dr P's protocol (when I was taking 5 Nutri Thyroid and 5 Nutri Adrenal Xtra per day, plus candida treatment/diet) I wasn't really feeling much better. Dr P told me I needed more T3 so I went to my gp to ask for it as I'm not really financially in the position to buy it myself, but unfortunately my gp did a tsh blood test and it came back very suppressed. So definitely no to more T3 and reduced my thyroxine and referred me back to Endo, hence these latest results.
I've fallen off the wagon as regards Dr P's protocol - stopped the NAX and everything because I knew I had these blood tests coming up and didn't want the supplements to affect the results. I'm sure I will regret this......
Will have to see what the Gp says I suppose and ultimately start again with Dr P.......
I found that NAX and Nutri Thyroid caused me to have a suppressed TSH and slightly over the range fT4 - I felt horrible.
I also felt awful when underdosed on NDT last Christmas, I had a high heart rate and felt hot as well as having anxiety attacks. It turned out that I needed an increase as both fT3 and fT4 had dropped too low.
Do you have fT3 and fT4 results as well as TSH. T3 usually suppresses TSH, so with a TSH that high, I suspect your fT3 will be low.
I am assuming that Dr P diagnosed adrenal fatigue as you were taking NAX? Just wondering if you have tried CT3M instead as this made all the difference to me last year when I was struggling?
Interesting what you say about NAX and NT - I was convinced this is what caused the suppressed TSH - but obviously couldn't tell my gp that.
For some reason I didn't have my t3 and t4 tested this time. The tsh was done as part of a TRH test, which I think proved normal.
Yes Dr P did diagnose adrenal fatigue. I haven't tried the CT3M yet. I have been holding out in the hope that I can get prescribed a bit more T3 via the NHS (which is proving difficult if not impossible). CT3M would be the last resort as it will mean self medicating which I will find difficult to finance and I also am quite frightened of. However, I seem to be getting nearer to that point....
If you can borrow from Thyroiduk.org a book called 'Tears behind closed doors' by Diana Holmes. It is an eye opener re undiagnosed thyroid gland problems..
I've been on thyroxine for almost 4 years. The addition of the 10mcg T3 was started just over a year ago - I've not had any problems with it, actually not really noticed the difference (except it has helped with losing a bit of weight) and always felt I needed more. Have had thyroid antibodies done in the past - both times raised. Gp seemed to think this was irrelevant.
I have had these problems - chest pains/palpitations before when I was on Thyroxine only, but not so much the night-time panic.
Yes I have been lucky with the endo (though it took nearly 3 years to get a referral) in some ways: she does test things like B12, cortisol and vitamin D. She also always tests for free T3 and T4 and this was how I managed to get some T3. However, what seems to happen is that as soon as my bloods look relatively normal, she discharges me (regardless of how I'm feeling). Also is very against prescribing any more than 10mcg of T3. So it's like going round in circles all the time!
From TSH suppressed to nearly 10 under an endo seems drastic for you to handle.
Could be you don't really take to T4 even though it has some effect. The T3 obviously works better but still may have side effects. I can't see how discharging you makes sense as you are not in a stable state just yet- apart from the AntiD's which again can be a mixed blessing.
Short term is supposed to do the trick -or be the wrong tack.
You do sound in good heart ,considering.
T3 tabs are small, I think, but could halving the dose prove anything for a short trial for night improvement?
This is normally where NDT comes to the rescue- but others may be better able to comment on that
If I sound in good heart then it's down to this forum which has proved to be a life-saver....
Yes, ive always felt that levothyroxine hasn't been good for me. I wouldn't say I'm allergic to it but it has never made me 'well' and there seems to be a limit to how much I can take (about 100mcg) before it makes me feel even worse.
I highly doubt the endo will consider NDT but my next move will be to ask to try either this or increasing the t3/reducing t4. I will have to wait though because my next appointment is in December and in the meantime she wants my thyroid bloods done once a month.......
I was on thyroid hormone for about ten years and then started with the night time heart pounding. I ended up doubling my dose and it stopped them. It was puzzling and I can only say there was a period of stress that may have put my adrenals over the cliff that might have caused it. As long as the adrenals aren't functioning well, it may well make it difficult to adjust your dose of thyroid. And the other deficiencies should be addressed immediately. Many of these interfere with T4 converting into T3 and that is why T3 is easier on the body.
Levothyroxine gave me horrible palpitations with lots of ECG's and 4 day heart monitor. Was awake most of the night. I improved when T3 was added but they disappeared altogether when I went onto T3 alone. Of course, everyone is different and what suits one person does nothing for another.
I've found I get sudden palpitations when I need more T3. For example, if I'm late, or have missed, taking my dose. Or if I've gotten exceptionally tired. I feel it is my heart trying to 'jump itself back into a normal rhythm' when it's rate has gotten so low?
It has also happened in the past during the periods I've either changed - or adjusted, my thyroid meds.
Nicolajane - are you taking selenium? I take extra selenium everyday, not just brazil nuts, as I have absorption issues. My TPO antibodies have reduced to 28 - an officially negative reading!!
Hi, thanks thats interesting. I'm sure I need more T3 and probably to reduce the thyroxine (this is what Dr P advised) but getting the T3 is proving to be a nightmare.
I'm starting B12 injections this week so will be interested to see if this makes me feel any better.
I'm not taking selenium at the moment, no. I have a few brazil nuts now and again but I often forget to have them. I think I probably need an overhaul of supplements some time soon and selenium is one that I will start taking - trouble is ive gotten overwhelmed before (with cost and confusion) by taking every supplement recommended on here!
Just wanted to say you must try and take some folate when you're having B12 injections, you say yours is normal but it's actually pretty low, would be better above 10. B12 injections need folate and iron to work properly, your ferritin is OK but might drop once you start treatment so worth monitoring. Also eat lots of potassium rich foods as this can drop with B12 treatment. Have a read through this thread:
Thank you that is really helpful. Of course I have been told none of this by the doctors.....
I'm having 3 injections of 1mg every 3 days and then once a month - should I be worried about side effects? the 1st one is on wednesday so not enough time to consume enough potassium/folate......
Are you in the UK? The loading dose is usually 6 injections over 2 weeks, i.e. 3 per week for 2 weeks. But the once a month thereafter bit is good, most people get lumped straight onto 3 monthly.
Everyone reacts differently to B12; you might feel immediate relief or it might take longer. You might feel worse, but think of it as start-up symptoms which will pass, rather than as side effects.
I don't supplement potassium, just be aware that it can drop and you need to eat potassium rich foods, bananas is the obvious one! But you can google for others.
Folate I definitely would supplement, it's vital. You can get 800mcg from Holland and Barrett, see PAS forum for dosage recommendations, it's often talked about in people's stories:
Yes I'm in the UK - it doesn't surprise me that this isn't standard - I dont think they know what they are doing. My Gp certainly doesn't. This has just come via a letter from my endo to my GP and nobody has explained anything to me!
Will pop to Holland and Barrett tomorrow and also get some bananas, avocadoes and apricots - sounds ok to me!
I believe everyone with Hypothyroidism, especially those with Hashimoto's, should supplement with selenium. It helps in the conversion of T4 to T3, as well as suppressing thyroid antibodies.
Though I totally understand your fears of being overwhelmed by all the medication & supplements, etc. I was once - now it's just a sort of 'way of life' & I've gotten used to making up my weekly pill cases. But (!) ... I'm SO glad I feel SO much better for it!
Increasing any kind of thyroid medication has to be done in very, very small amounts over a period of time. Although, every symptom/feeling you get, when changing dosage, needs to be taken note of to allow assessment of the changes; you still need to be aware that your body chemistry is being changed each time in a vital way and so your body needs to make various adjustments. Like others are saying - bear with each adjustment. Sometimes the change effects subside, sometimes they don't - that's when you know you've done too much - or too little - or too quickly?
My personal rule of thumb is that, if I'm still getting annoying or worrying symptoms after two weeks - then try something else! (e.g. lower increase and/or over a longer period of time? However, I am a little more experienced at this now - but do talk to your doctor if you feel able to. They will also need you to tell them if the symptoms are bearable to you personally, or not, whilst you are changing dosage, however, they should be a little more cautious with you than I am with myself - especially with a patient that's not been on the meds for a long period.
Has anyone experienced waking with your heart racing in the night without a change in meds. I started a paleo diet 3 months ago feel great energy wise, but have started waking in the night with my heart pounding. I'd like to believe this is because I need less meds, (armour/nax). But some reports seem to say I may actually need more. I'm So confused. I feel like stopping all my supplements and going back to basics just to get back to some kind of normality back but not sure about that either.
I cant answer your question I'm afraid as I still haven't resolved the problem myself! I've now increased my T3 and I'm still having the same trouble so dont think it can be from not enough meds in my case. How much nax are you taking and for how long? I know what you mean about getting back to normality - the sleep deprivation alone is enough to drive you insane.....
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However, I am a little more experienced at this now - but do talk to your doctor if you feel able to. They will also need you to tell them if the symptoms are bearable to you personally, or not, whilst you are changing dosage, however, they should be a little more cautious with you than I am with myself - especially with a patient that's not been on the meds for a long period.
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