Over the past 12 months I’ve had problems taking my thyroxine as each time I try to take it or I ncrease my levothyroxine I get mad tingling and rushes of what feels like adrenaline then shortly after my legs go very weak and I can hardly walk.
I’ve just been reading about potassium and that it can drop if your thyroxine is high or an increase. And you can have potassium paralysis. This sounds very similar to what is going on with me
Has anyone suffered from low potassium when increasing Levothyroxine please. And had similar experiences.
My current levels are:
T4 6.4 (7.6-14.40) needs to be higher!
TSH 4.46 (0.35- 5.35)
T3 3.5 ( 3-6)
I’m currently on NDT but trying to switch to liquid thyroxine as prescribed by my Endocrinologist
I’m trying to increase my thyroxine but each time I do I end up with tingling, flooding of adrenaline and then can hardly walk. I can talk and think fine just my body, legs especially won’t work. I get a headache each time too on the right side.
Thanks
Pam
Written by
McPammy
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When did you last have B12, folate, ferritin and vitamin D tested?
Low B12/folate are very common. Low B12 causes pins and needles
Clearly you are very under medicated for thyroid
Do you have autoimmune thyroid disease diagnosed by high thyroid antibodies?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised or under medicated
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If also on T3, or NDT make sure to take last dose 12 hours prior to test
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Endocrinologist often don't realise importance of good vitamin levels
With autoimmune thyroid disease (Hashimoto's) gluten intolerance is extremely common
I’m going to start next week in a banana a day just to be safe.
My Endocrinologist suggested liquid thyroxine. I took a small dose with half my NDT. The other half of NDT later in the day ref T3. I was fine. The 2nd I did the same. Within a hour I that morning was tingling all over. Racing with what felt like adrenaline. Had to go to toilet 4 times in an hour. Then shortly after my legs wouldn’t work properly. I am so disappointed I was hoping the liquid would work. Endo wanted to rule out fillers. Every time I either introduce Levothyroxine or increase it it’s the same story. Many times I’ve ended up in A&E as just couldn’t understand why I couldn’t hardly walk. My legs are as though I’ve drank concrete. Mentally I’m ok it’s my body that’s the issue.
Endo spoke to me on Friday night. He’s calling back on Tuesday when he back in clinic.
I’m still waiting for the T3 suggestion from my Endocrinologist. He recently advised I should try liquid thyroxine. I tried this. On day 2 I was very unwell. Seemingly felt like I was suddenly over medicated. I only took 25mcg!!!
I’m waiting for a call on Tues as to what to do next.
From what I've read, the balance of probabilities is that a thyroid connection to a fall in potassium levels such that it induces hypokalemic paralysis, would be unlikely. When connected to hyperthyroidism/thyrotoxicosis, it is classified as rare, and mainly found in Asian males. In terms of hypothyroidism, it is classed as very rare, and relates to the untreated state, abating with treatment of the hypothyroidism. In one study, the withdrawal of thyroid meds from hypothyroid patients pre-RA ablation, primarily resulted in hyperkalemia developing in a small percentage, and any potassium-lowering effects were not material.
Separate from hypothyroidism, many hypokalemic paralysis attacks are triggered by sweet/starchy/salty food - blood sugar rises rapidly, triggering insulin which drives potassium from the blood into the muscle cell, which triggers weakness. Other triggers are unusual exercise and sitting still for too long.
I’m at a loss. As each time I try to increase my thyroxine I’m in big trouble. Tingling all over, adrenaline like flooding. Needing to toilet several times. Then suddenly I can’t walk. My legs are like I’ve drunk concrete. I’m normally fine mentally. It my muscles that are greatly effected.
If my thyroid goes slightly over the range this happens every time. Or if I’m trying to up my dose. In the past 5 years I’ve had to lower my dose from 125mcg to 75mcg Levothyroxine. I’m now on NDTto see if that helps. It’s better but I still have the same issue if my TSH goes high for some unknown reason. I’ve been put on liquid thyroxine last week to rule out fillers. This is when I tried to up my T4 level. Next thing fizzing and then can’t walk. The only thing I’ve read that fits my symptoms seems to be potassium paralysis. I’ve had my potassium checked over the year and it’s normal however I’ve read you can be normal but when you get an attack it drops and causes muscle weakness and paralysis. I’ve had to lay flat for months during last year due to not being able to walk properly. During this time my thyroid has been so low and TSH very high as I can’t take much Levothyroxine. I stopped taking Levothyroxine reluctantly for a week. All my symptoms disappeared within 2 days. I then went on NDT which was also a struggle but I eventually got better but not better enough. I’m still trying to increase but each time I end up in a terrible situation
Thanks for your thoughts and support. It’s certainly appreciated
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