I was diagnosed as 'borderline' hypothyroid about 5 years ago. I take 75 mg daily well before breakfast. Sept 22 suddenly started having major tremours (body totally leaving the bed, freezing cold, tingling extremities, mainly starts 1am, tremours 3 - 5 am) That day I have small tremours, increased heart rate.The same thing happened Sept 21 and it took until May before I really felt improvement...is it linked to the colder weather?
I've finally managed to go in a wheelchair to my GP. My tsh is 0.29, t4 16.7, t3 4.4. Sorry but unable to access the ranges.
After yet another very scary night I have spoken to a gp and been told my tsh is slightly low, I'm 'well medicated' and to now go 38 hours without levo and take at bedtime to 'see what happens'
I had taken fairly high dose iodine before Sept 21 (I was trying to improve my 30 year mercury toxicity.I didn't realise the danger)
Pretty scared and would appreciate any ideas on my test results and symptoms.
Sorry this post is long and rambling
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Signalbox
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We really need ranges but if your GP is basing his diagnosis on TSH then he is missing the mark
You are legally entitled to request lab results from your surgery so I suggest you give them a call...and remind them of your entitlement if needs be.
75mcg is not a large dose and it seems unlikely that you are " well medicated" and very likely that you are undermedicated.....there may be several reasons for this
Medics are supposed to include clinical evaluation in making a diagnosis....how you feel. Did he ask how you feel ?
You are clearly unwell so further investigation is required not simply a useless adherance to TSH as a marker which science proves is wrong.
Borderline is an unsatisfactory diagnosis...to my mind one is either hypothyroid or one is not and borderline is a failure to diagnose correctly.....but that is what med students seem to be taught.
This one is flying by the seat of his pants! Not uncommon!
TSH is a pituitary hormone and reflects the overall level of the thyroid hormones in the blood....it does not differentiate between FT4 and FT3, which is vitally important.
Your TSH may be low which at first glance suggests high hormone level ( and what this GP has concluded) but that is only a fraction of the story.
First we need to know the exact levels of each hormone and where they sit in the ref range
Being in range is not good enough, your labs must sit on the exact spot within the range where you feel well....which you clearly are not.
T3 is the most important result followed by T4....they are the thyroid hormones
T3 is the active thyroid hormone and for good health must be available to the body in a constant and adequate supply....and it must reach the nuclei of the cells where it becomes active.
T3 in the serum is ( FT3) not active but if thyroid function is robust that serum T3 will be transported the cells and taken to the nuclei by T3 receptors where it performs it's functions
Your symptoms may be developing during the night as a result of your available ( cellular) T3 falling....these are symptoms of undermedication.
Have you had Vit D, vit B12, folate and folic acid tested? These must be optimal to support thyroid function.
Many of us test privately to obtain full thyroid labs which include
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and TG
Iodine is not recommeded for hypos and may be implicated in your problem. The body does need iodine to make thyroxine, however, iodine deficiency is uncommon in the UK.
If the underactive thyroid isn't caused by iodine deficiency, then iodine supplements give no benefit and shouldn't be taken. In fact, for some people with an underactive thyroid, too much iodine can cause or worsen their condition.
Once you have your full labs then a case can hopefully be built to ensure you get properly medicated.
My tsh is 0.29, t4 16.7, t3 4.4. Sorry but unable to access the ranges.
Pretty scared and would appreciate any ideas on my test results
Sorry Signalbox but it's impossible to comment on results without their reference ranges. These vary from lab to lab to we must have them. Going by typical TSH range we see here your TSH may be very slightly below range but it certainly isn't suppressed. My GP range for FT4 is one of the lowest at 7-17 so you wouldn't be over range with that reference range, and one we see often is 12-22 so you'd be less than mid-way with that range, but we can't guess, we must have the reference ranges for all your results.
Your symptoms could be anything and one would hope that your GP has instigated some investigation into them.
If you take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Your night time tremors do sound very scary and an unpleasant experience for you.
Just wondering if you have any problems with anxiety? I know from personal experience how horrible it can be when you are woken at night by a panic attack.
Mine have tended to be more extreme at night and very scary to wake in the middle of one. The effects lasting for much of the daytime, feeling drained both physically and mentally.
I'm not saying what you are experiencing is anxiety but it may be something to take into consideration.
Not to quibble with Hedgeree I wonder if hypothyroids become anxious with the symptoms rather than anxiety bringing on the symptoms. When I was young I thought I was anxious and indeed went along with that for many years. Very debilitating. However now, when I get the symptoms I do not at all panic. In fact I see and feel everything remarkably clearly for what it is (for me) some sort of symptom or reaction to meds. Just saying, because I am fed up being gaslighted by ‘helpful’ NOT GPs. GPs so want to attribute our ailments to things far and wide, when the symptoms are often just down to our thyroid condition. By all means always check (we deserve a good level of care) if in doubt. Just step back for a moment with any digression presented to you and ask yourself if you disagree before going down some unrelated path.
Thanks for your reply. I totally agree...the symptoms make me anxious,not vice versa. The tremours are actual seizures where I physically leave the bed and happen 3 - 5 in the morning( ? Because I have run out of t3). I am freezing cold under 3 duvets yet according to my GP I am 'well medicated!'Getting medichecks advanced thyroid home test as soon as xmas over and have an appointment on 10/01 with a different GP....fingers crossed.
I think we can agree that medics do not know nearly enough about thyroid issues. It’s almost as if because they exclusively deal with patients that they think they are the only ones who know anything about it. As I have said to Hedgeree the symptoms are hugely wide ranging and most of them go unrecognised by medics. They really do not know nearly enough about the issues - especially hypothyroidism I would say. If your symptoms are due to running out of T3 and they certainly could be, what can you do about getting more? You will almost certainly be ill and possibly the very symptoms you describe are the result - whether or not you have previously experienced them. Best Wishes.
I've had mental health problems for many years and am continuing to suffer from gaslighting by the gp.
It is only in the last few years after discovering that I actually have thyroid issues that I now realise I may have been hypothyroid since early teens (I'm now 50+)
I've recently in the last few months (after having a partial thyroidectomy) actually prescribed levo and the shift in my being is life changing; I only wish that my hormone issues had been recognised by my surgery instead of the battle that I've undergone for many years and the continual gaslighting by my GP....as I was constantly told that I didn't have a thyroid problem.
Having a label of lifelong mental health problems has been very disabling for me and has regrettably affected all areas of my life.
My clumsy suggestions for Signalbox were only to try to help them rationalise and emphasise what was possibly happening to them at night and not in any way trying to shift the focus away from their thyroid problems. As you know there is an overlap with anxiety and thyroid symptoms.
When night time panic happens to me now...I can reassure myself that it is just anxiety and I will be fine but it's taken me a long time to be able to do that.
I feel it's a bit chicken and egg for me...which came first?
Hopefully when Signalbox gets optimal levels of hormone replacement their symptoms will improve despite their GP's unhelpful attitude.
Not in the least clumsy. Caring. I have been diagnosed less than two years. It’s been an upheaval on every level. It is criminal (in my opinion) that we live with this sense of apology because we are tagged ‘anxious’. This is still relatively new to me but like you, I am pretty sure I have had thyroid problems since I was a teenager and I am now 70. I literally rock between bitterness and gratitude that I might just now have a chance to have a more normal life. It’s late but maybe ….. You are in the right place. We all have similar issues. The actual content of each parcel varies and it seems everyone on the forum has experienced their very own combination. Many symptoms have no bearing on what the NHS publish but you will find them all here. I am very grateful to find the curious number of symptoms. I am no longer alone. No wonder the medics do not understand thyroid stuff and they blooming do not! However I do not forgive them.
I understand very well that notion of flipping between bitterness and gratitude. Now I try to stay in the middle of the two though it isn't easy.
Finding Healthunlocked and this forum was completely accidental and I can now not imagine life without it. I wouldn't have got this far without the collective knowledge of the members here. Like you say....'I am no longer alone' 😊
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