I am just wondering if anyone has had what feels like very weak muscles that leads to a shaky feeling with hypo?
I am T3 only, still have low temps and vitals despite hitting 85mcg slowly. The last couple of weeks I have had many days where my muscles feel weak and when I’m moving around I feel very unstable and shaky. I have been absolutely petrified and tried all sorts of adjustments trying to see what could be causing it. The only option I really have left is that still being hypo is causing it. I would feel comforted knowing others have had this and it’s eventually resolved. At the moment i am so petrified that something else is wrong with me because I can’t seem to find the cause.
Please no horror stories 😂
xxx
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Beau55
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Thank you so much for your reply..Yes I used to be under a cardiologist for a number of years and used to take fludrocortisone to control things. When I first got well I was able to ditch all the medication and had relief from my pots so I know for me at least, it’s being caused by low cellular t3. Unfortunately it’s gone completely haywire since being poorly again. I agree, I do think it could be POTS but wondering why I’ve never experienced it before 😕
Yes I know the range is normally 60-90 but my Endo says most rest between 80-90 from her experience. I do think from bloods taken on 3 1/2 grains that I will need a big dose as I was still very well in the reference range. I think potentially I could be one of those who need a higher dose due to some form of resistance!
I have been on b12 injections for the last 6 years so not much point testing! I could potentially look at my other b vits though? My folate has been low in the past
How often have you got them? Have you continued after the loading doses till all the low B12 symptoms resolved and then spaced out?
It could be really all the major cofactors at play - B12/folate, iron/ferritin, vit D and crucially cortisol. You know all need ot be optimal for T3 to work well and your symptoms could be caused by an imbalance of one or more of them.
Certainly worth adding it in now, 70 isn't great🤗 mine used to drop in the summer 🤷♀️ so now supplement all year with a bit extra from here till April
Definitely. Shaking like a leaf and feeling as if I couldn’t support myself to stand up or walk was one of the later warning symptoms before I finally consulted the GP. I sometimes felt as if I may fall even when seated on a hardback chair. I took to taking a long handled umbrella when I had to go out but knew I couldn’t go on like that. Which is when I turned myself in, so to speak. I was craving orange juice (as if hypoglycaemic). I had never drunk juice before - so weird. Blood tests revealed hypothyroid and not even pre diabetes, which I had wondered about. The GP explained that the need for sugar/energy was likely to do with adrenalin being released due the lack of circulating thyroxine. The brain going on high alert. All I know is how scary it was and it took about a year of building up my Levothyroxine dosage before I felt stronger and stable again. I hope you can work out your situation and hope you soon feel more like yourself. I realise from your profile the difference in our ages and treatment but thought it may help to say how far reaching hypo symptoms can be.
Beau55 Pandora you and Beau have highlighted stuff I had almost forgotten about! Your GP seems to be ‘thinking outside the box’. I say that respectfully because I have not heard this explanation before from a medic - not that they seem to be prone to ‘thinking outside the box’. For all any of us know this may be something he/she actually picked up in med school or perhaps disappointingly something gaslighting. I find it increasingly difficult to believe anything we are told. Suffice to say DITTO all symptoms mentioned I have experienced at one time or another. Each of us seems to have our own ‘brand’ of hypothyroidism. That is we seem to experience a broad range of similar symptoms but have our own ‘defining’ symptoms amongst the list more strongly.
Thanks for your response Pandora, that has provided me with some consolation and relief that I am not alone with this. I’m so pleased that you managed to get yours resolved with treating your thyroid correctly ☺️ I am hoping that once I reach a stable level it will slip away. I have been plodding along quite nicely but this has come as a real curve ball that has sent my hypo mind into oblivion! X
Cortisol is not required for T3 to be able to enter the cells. T3 enters our cells through transporter molecules and these do not require cortisol to function. Therefore, there is no evidence that low cortisol causes T3 ‘pooling’ or ‘build-up’ or inability to enter our cells. In fact, new research as of 2021 proves the opposite is true – high levels of cortisol actually inhibit T3 transport into the cells, whereas low levels do not. The idea of ‘pooling’ is simply another Internet myth that is incorrect and misleading
Although your T3 dose is 85mcg, the hydrocortisone may be preventing it's transport to the nuclei of the cells causing you to feel undermedicated. Low cellulat T3 = poor health.
I need high dose T3-only to function and went through a period of feeling unsteady with weak legs....dose increase resolved that.
I would reconsider hydrocortisone use and re-test thyroid hormones at least a week after stopping.
The new labs should point the way forward.
I think your symptoms may be caused by low cellular T3......but I'm another patient and not medically trained
That's an interesting about maybe some like yourself needing very high T3. Not wanting to start a debate at all, just feel it's also worth saying that, as explained in their previous posts, they have been on a pretty hellish journey with cortisol, and spent a long time trying to get along on meds without supporting it (even a failed synacthen test, so it's a serious level of dysfunction). I'm another one taking HC, and it's never anything but a last resort because we find it impossible to tolerate T3, and without the T3, we can't get thyroid levels up enough for cortisol recover, and round and round we go. Low cellular T3 on a high dose means that something would be blocking it, and the experience of many of us in this situation is that cortisol is that block. I respect Paul, but I worry about him be a bit too much 'my way or the highway' as a non-medically trained patient advocate. Anyway, hope that comes across in the right light, just something maybe we all need to work out how to approach better - as you say, not everyone needs the same things.
Interesting the way you have set out your profile. I have not done mine yet but I think the way you have done it is likely more beneficial to getting administrators help. The background is good for people joining the forum, knowing their experience of hypo corresponds with others but maybe admin does not need too much detail to read through to supply some answers. I talk too much. Anyway very interesting reply to Beau55 .
I was interested in your bit on pooling T3.... Recently I've been seeing an endocrinologist in Liverpool who as now got me diagnosed with primary hyperparathyroidism after 3 endocrinologists refused to acknowledge I had it.
She did all the blood work for the diagnosis of primary hyperparathyroidism, but she also did a full thyroid blood work up, obviously the day I travled I'd taken my 10mg T3 at 5am..(im having so much trouble taking the thyroid medication I can't eat when taking it because I always have diarrhea and cramping with inflammation (colitis and lactose intolerant, I'm on Roma T3).
She rang saying my T3 was over range and I was probably over medicated 🤦♀️, I then explained I'd taken my 10mg T3 at 5am....my bloods were taken at 11.30....what was my T3? She informed me it was (11.4)..6.80 is the ceiling.
She was shocked I still had a T3 level of 11.4 six and a half hours after ingestion, she then asked when would I be taking my next dose.
12.30.. 10mg..(i take 25mg per day)
So she said with a level of T3 at 11.4 at 11.30..your going to take another 10mg at 12.30 in effect pushing up the t3 level FUTHER.
This is when she mentioned 2 things.... One... I could be pooling the t3 therfore its not getting to where it needs to go remaining in the blood stream .
Two.... I'm maby hypersensitive to the drug!
Both are confusing to me, she as asked me to see my gp about this, but appointments are none existent at my surgery, I've tried constantly everyday rining but no luck.... Just no appointments 😠
It's to the point now this last number of months where due to the constant diarrhea cramps and inflammation I've to come off the t3 to give my bowles a rest, everything goes back to normal... "Its heaven"... Then I have to go back on the t3 again (I have no thyroid) and the horror show begins again.
I've in the last number of weeks presented myself at the surgery with the pictures of what I'm passing pure watery diarrhea, I've showed the receptionist and asked if this would not be classed as an emergency as there could be issues with my T3 intake.
"No it's not an emergency" is always the answer 🤦♀️
Now unfortunately I've developed a number of clots and inflammation in the optic disc and are being sent to a specialist, so again seeing a gp about my T3 seems FUTHER away than ever😔
Yes I am currently still taking HC. I can appreciate your concern but I do think it was the right move for me and I think sudden withdrawal for anyone could be quite dangerous. My history with low cortisol is quite extensive following a below range 9am cortisol serum test - I have previously failed a synacthen and required a cortisone injection following a collapse and an emergency IV hydrocortisone during surgery. Unfortunately this still wasn’t enough for a diagnosis.
I tried to take NDT with no adrenal support and ended up severely ill. I managed to get up to 3 1/4 grains of armour with the use of cortex but I was severely unwell. I could barely stand up anymore and I tried my best to avoid HC. Since I started it in June I have had immense relief and great progress and it’s allowed me to get my t3 up to a level where it can begin relieving some of my symptoms . I do believe I may be similiar to you and may require a large dose of T3 to finally recover. Things were going very well until I slowed down with the raises so I am hoping and praying this may be the answer 🙏
I have seen that section from Paul’s book before but he also stresses the importance of treating low cortisol when medicating with T3. Much like Barry Peatfield, I think he stresses the danger of persevering with thyroid medication in the presence of low cortisol. I know from my own experience that this has precipitated an extreme reaction that has made me feel so ill I thought I would die.
Im actually having this issue too … Yesterday was maddening for me It actually makes you a little panicky and stressed… Im thinking its time for me to visit my doctor but I really hate wasting my time.
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