I have a lot of symptoms, some of which I have all day, but others follow a distinct pattern. Wondering if anybody has some thoughts on breaking this pattern.
1) Wake up around 6 (take first 30mg NDT) with anxiety, shakiness, weak legs, trouble with vision (dry gritty eyes, slow to focus) etc which builds for the next hour and then starts to go away. Gone around hour 2.
2) As the anxiety goes away, nausea and related symptoms start (burping, off balance, dizzy, etc). Severity varies. 22.5mg NDT at 10:30
3) Sometimes nausea lasts all day, but generally much better by about 2pm. 22.5mg NDT at 3:00.
4) Feeling a bit better by suppertime. Sometimes have break-through anxiety around 7pm. 7:30pm 22.5 NDT
5) Best part of my day is from around 8 to midnight. Last 22.5 NDT at midnight.
I've tried various combinations of the 120 mg NDT and the pattern stays pretty much the same.
Last bloods were on 112.5mg NDT on Mar 5. I've since increased to 120mg NDT:
TSH: 0.01
FT4: 15.1 (12 - 22) - 31% of ref.
FT3: 5.9 (3.9 - 6.7) - 71% of ref.
Sep 2020 bloods:
B12 -1476.
D3 - 123.
Ferritin -81 (20-120)
Iron - 12 (10 - 29)
Iron Binding - 57 (45 - 72)
Saturation - 25% (14 - 51)
Thanks!
Eve
Edit: Just adding some history. I've been hypothyroid for a long time and was feeling ok at 150mg NDT. All of summer 2019, I was overdosed and really crashed with a bad flu in Dec 2019 which I cannot seem to get rid of (still have sinus issues, "full" ears, dry eyes, runny nose and a bad cough). Since then I've tried everything i can think of to get back to feeling good including switching to synthetics which was a disaster. I've been back on NDT since about July 2020. I felt a bit better from July to October 2020 and then crashed again.
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Have you ever monitored your blood pressure, pulse, or done a 4 point saliva cortisol test? Do you wake early in the morning 2-4 hours after going to sleep? I was having a lot of dizziness, nausea and just general malaise on Levothyroxine, now on T3 only. Turns out my cortisol is elevated throughout the evening all the way to my bed time when it should be low ,and then low in the morning when it should be higher. This is usually when I have the most dizziness and symptoms then later into the day I feel better. I've just ordered a blood pressure/pulse monitor and digital thermometer to keep track. Have you tried to take more NDT at once like 60mg in the morning instead of spacing it out?
Thanks for your reply. I fall asleep around midnight and wake up around 5:30. Usually don't wake up during the night. I tried Cortef for about a month, which was not good at all - I felt much worse.
Yeah I monitor pulse and BP. Both are all over the place. I did the Dutch test, which is 4-point urine. It shows morning at smack dab in the middle, then lowish levels in afternoon and going back up at evening. All within normal levels though.
Temp is a little on the low side, averaging 36.7.
I have not tried taking more NDT at once. I've not tried more than 30 at one time. That might be worth a try though. Thanks for the suggestion!
My cortisol is also in the middle in the morning. I don't think your body temp is too low. That's a tough one because you're having dry gritty eyes and vision problems. Normally I get that when I'm on a dose that's too low. Nausea and dizziness also when under medicated. It's hard to say if it's due to blood pressure or dosage. I'm not an expert but it's something to consider- adrenals, blood pressure, and dosage.
I think my adrenals may be suffering a bit but I think my thyroid levels are too low. I am really having trouble increasing right now. I increased a little more than 2 weeks ago and I still feel really awful. I don't know what to expect anymore when I increase. Is it normal to feel worse for awhile?
I had dry gritty eyes when I was overdosed the summer of 2019, so now every time my eyes are worse, I think I'm overdosed. But given my blood numbers, that's not possible.
I also feel nausea and dizziness when too low, plus anxiety attacks. But... I seem to feel that way when overdosed too. I just don't know what to do.
I have read quite a bit on deiodinases and hypo / hyper symptoms.
I also had the dry gritty eyes when on Levo and trying to increase it. Since thyroid hormone is supposed to make you feel good I don't think it's normal to feel awful. You should be improving if it's the right amount. I'm currently on T3 only because I couldn't raise any Levothyroxine or T4 like in NDT without experiencing exaggerated symptoms. I ended up with adrenal problems from being on T4 only and low for too long. If you go back down to the lower amount of NDT after a few days do you feel any relief? When you had these crashes did you notice any difference in your FT4 or FT3 levels.? I started getting crashes when my FT3 levels declined. Do your crashes usually happen in the cold months?
I could try reducing a bit today but I felt this way when on the last amount too. I think overall I’m still too low. With the first crash I was over reference on t3 and t4 was just above mid range. Yes they almost always happen in the cold months.
You definitely have a mystery here. I know some people add some T3 to their NDT when they simply aren't feeling well when they increase or decrease. Yes, my adrenals are really messed up. When I try to raise I get dizziness, flushed feeling, and just overall wonky but if I keep it lower I feel terribly hypo. It's like a terrible cycle. I'm also in the investigative stage. Personally, all my problems go away when my thyroid hormone is just right but how to get there and keep it that way is complicated. Also, a few of the NDTs had recalls. I tried Naturethroid and it was like it had no T3 in it. Not sure which one you're on but if you were doing fine and then suddenly feeling unwell that's possible. I know that happened to me when my generic Levothyroxine was switched on me. I went from being functional to crashing. That led to my adrenal and nutritional issues. I've also read that people need extra thyroid hormone in the winter and it needs to be increased a small percentage. I never knew this for the 10 years I was on Levo. I read this online Google book by Dr Kenneth Blanchard and he described how his patients would adjust their thyroid hormone around Oct or Nov by a small increase and then decrease around April. He also described that the only way to know if someone needed more T4 or T3 was to add either one and if an improvement was noted then go with it. I'm not an expert at any of this and struggling with finding the right amount for myself but these are a few possibilities to mull over. 🌸
Hi Jonathan. Thanks for your response. I am chewing gum. No difference. I’ve got eye drops but not tried hylo. I’ll see if it’s available here. I’ve also read Paul’s books. Perhaps time for a reread.
Maybe you developed and autoimmune issue like Sjogren’s disease which causes dry eyes (gritty feeling) dry mouth and even the inside of your nose can be affected by this disease. I sleep with a humidifier next to me to keep my dryness down and it helps my eyes a lot.
What NDT are you taking? A couple of the NDT’s had some reformulations over the last couple of years. I was on Naturethroid until 7/19 when things started to go south for me and haven’t been able to make any medicines work for me since. My cortisol is similar to yours and I think it was from being underdosed for so long. I’m trying to correct it now by taking herbs and vitamins. I just read about drinking Himalayan salt in water to help adrenals too. My understanding is that poor iron or adrenals make it hard to increase thyroid medicines without side effects.
I take ERFA. I also wonder whether my cortisol is because I've been underdosed for a long time. Last check my iron was at 12 (10 - 29) and Ferritin was 81 (20 - 120). So I'm not sure if I should supplement or not.
I dose my NDT just once a day at around 3.00am to dove tail in with circadian rhythm of the body :
Other people split their NDT dose am and pm :
I read of people taking T3 possibly 3 /4 times a day but generally as adjunct to a much larger dose of T4 taken all at once either fist or last thing in the day.
I'm with Graves post RAI ablation in 2005 and manage lingering Graves, thyroid eye disease and hypothyroidism and self medicating with Natural Desiccated Thyroid.
I agree with the other members definitely taking a higher dose at once or in two split doses. It’s worth trying to seeing how you feel. Check out this website it might help you further:
Hi AAP10. It might be worth a shot to try a few less doses. I've read stopthethyroidmadness many times. I can ask about some of those tests, but I have trouble getting her to test D and B12. I do get calcium and magnesium tested quite often (I'm also diabetic).
Just looking back I think i read you said you felt better on 135mcg NDT -
Somewhere else I read you had Hashimoto's and somewhere else I thought I read you had central hypothyroidism so I'm not really sure now what you have been diagnosed with :
I do think you are splitting your dose too much :
I am only on 1+1/2 grains but then I haven't a thyroid and I take it all at around 3 am in the morning to dovetail in with the circadian rhythm of the body:
Many people split their dose of NDT generally into into am and pm - but I've never read of it suggested to split further than two : and just wonder if this be the issue ?
It's also necessary to ensure that your vitamins and minerals are all maintained at optimal levels :
There have been several recalls of various NDT brands due, I think, to sub potency issues, could this be an issue ?
Thanks for your reply. Yes I have hashimotos, yes am central hypothyroid. I can't even get to 120mg NDT anymore. I am trying to split my dose into 3 now, but generally feel quite hyper when I do. Vitamins and minerals have been tested.
Latest -
B12: 1476 pmol/L (138 - 781)
D: 123 nmol/L (70 - 250)
Iron: 15 umol/L (10.00 - 29.00)
Ferritin: 65 ug/L (20.00 - 120.00
Iron Saturation: 34% % (14.00 - 51.00)
Iron Binding Capacity: 58 umol/L (45.00 - 72.00)
I had a very strange result from the pfizer covid jab. Ended up in hospital with high heart rate (120 - 140 bpm). I had thought I was overdosed, but they checked my Frees and they dropped significantly, plus had very wonky white blood cells, so I think non thyroidal illness. I won't add TSH here because it's always 0.01.
2021-04-08 (On 112,5 NDT)
FT3 :6.39 pmol/L (3.9 - 6.7) - 89% of ref
FT4: 16.90 pmol/L (12.00 - 22.00) - 44% of ref
-------------
2021-04-25 (24 hrs after pfizer covid jab and on 112.5 NDT)
FT3: 4.57 pmol/L (3.9 - 6.7) - 24% of ref
FT4: 14.10 pmol/L (12.00 22.00) - 21% of ref.
-------------
2021-05-07 (On 112.5 NDT)
FT3: 5.95 pmol/L (3.9 - 6.7) - 73% of ref
FT4: 16.40 pmol/L (12.00 - 22.00) - 44% of ref
I tried to increase to 120mg NDT on 2021-05-07, but now feel quite overdosed so have reduced back to 112.5.
I think if you can try and reduce down your dose of an early morning and then a mid afternoon this will be easier to manage.
I have read that some people take NDT close to food to offset "spikes " - it might be worth a go - and if this works you may then manage a little increase in NDT.
Hashimoto's throws another spanner in the works as if your antibodies are high it's likely your immune system has been triggered and your T3 and T4 levels will be erratic and no doubt you may experience these " hyper type " swings - however once this swing swings back, your thyroid is further damaged and you will likely need to increase your NDT to compensate for glands further failure.
I read of people sensing a " hyper swing " stop the thyroid meds for a few days to try and offset it's severity of symptoms ?
I read of many people referring to Dr Izabella Wentz who has Hashimoto's and suggest the importance of healing the gut and looking at the AI triggers people have found in certain foods such as gluten, wheat, dairy and processed products.
Hi pennyannie, all worthwhile suggestions. I'm working on changing dose timing, but if I don't take the morning dose, the morning panic/anxiety stays longer (it usually goes away about an hour after that first dose).
I don't THINK I'm having any hyper swings anymore. I've had hashimotos for over 30 years. According to ultrasound, my thyroid is very tiny. I've not had antibodies tested that often - they don't like to do them here as they "don't change treatment..." But any time I have had them tested they're right around the top end of the reference range - rarely peaking over.
I've tried gluten-free for well over 3 months - might be closer to 6, I can't remember now. Also tried getting rid of dairy for a time and processed foods.
The only thing I haven't yet really tried is to add levo to my NDT instead of increasing NDT when I feel hypo.
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