My son recently got his blood results and it was noted his Thyroid levels weren't in range and a re-test due in 3 mths, my mother had it too, so will be interesting to see my results in a few weeks time.I was however surprised to see how many of the symptoms he has/is experiencing, associated with FND, are also associated with this. Muscle cramps are mentioned but not spasms and therefore my research, led me to this interesting article.
And as always, I have copied a little section below:
"Exploring other neurological symptoms of hypothyroidism:
In addition to muscle spasms, individuals with hypothyroidism may experience various neurological symptoms, including:
Muscle weakness: Weakness in the muscles is a common neurological symptom associated with hypothyroidism. The muscles may feel fatigued, and activities that were once effortless may become challenging.
Tingling and numbness: Some individuals with hypothyroidism may experience tingling sensations, often described as “pins and needles,” in their extremities, such as the hands and feet. Numbness may also occur, leading to a reduced sensation in these areas.
Coordination difficulties: Hypothyroidism can affect coordination and fine motor skills. Tasks that require precise movements, such as writing or buttoning a shirt, may become more challenging.
Slowed reflexes: In some cases, hypothyroidism can lead to delayed or slowed reflexes, affecting the body’s ability to respond quickly to stimuli.Mental fog and cognitive changes:
Neurological symptoms of hypothyroidism can extend to cognitive functions. Individuals may experience difficulties with memory, concentration, and overall mental clarity. This mental fog can impact daily activities and quality of life.
Depression and mood changes: Hypothyroidism has been associated with alterations in mood, leading to symptoms of depression, anxiety, and irritability. These mood changes can significantly impact emotional well-being.
So if you haven't had the test, called a thyroid function test, that looks at the levels of the thyroid-stimulating hormone (TSH) and thyroxine (T4) in the blood done within your last set of bloods (not sure if standard and my sons last bloods showed low iron but no mention of Iodine levels, so assuming not standard. We were not told if too high or low, so data I will be requesting.
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Lady4
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That describes me in a nutshell! But no one seems to listen to that in regard to hypothyroidism. I actually stopped Levothyroxin to see if it made any difference and the muscles cramps went but the fizzing/pins and needles remained. I was referred to endocrinology and they wrote back to say try a different make! Then if that doesn't help refer me back. The pharmacist said there are 20 different makes to go at so it could take a while!
It seems that diagnosises can only be done in tunnel vision! I told the neurologist but if it's not on their radar, they can't see it. If only the medical profession could see things as a whole and not pigeon hole things and discharge you. It's so frustrating.
Absolutely, a video I watched earlier on sensory training commenting how patients had been traumatised by the Healthcare System (USA) by their lack of understanding of FND and them thinking patients make it up still, shocking.It ended with this: "lets treat things, lets not attribute it all to FND".
Lets hope the medical professionals are getting that message and I hope they find the medicine that helps control your levels as its absurd to discharge you esp because of the risks involved if untreated.
Hi Lady4 this is all really interesting, thank you and I admire your diligence in doing all this research. I do start to wonder if your son's dx of FN(C)D didn't take this into account (that is, if they didn't take a full family history so were not aware of your mother's thyroid issues). If that is the case then you could ask for a review of the way his diagnosis was made and the rationale given for the FN(C)D/DSM dx.
In the UK blood test results are measured against a 'patient population' IE people who are unwell, rather than against the general population so results such as 'low but within normal range' (which is often given regarding vitamins and minerals) are interpreted as being OK when they might not be.
Also our constitutions, including our blood, have changed a lot over the last 40-50 years because we now spend less time outside and may have a very different diet to people back then (eg through eating far more processed food nowadays) and this, too, can distort the results. When I mentioned all this to my old GP he said I had 'health anxiety' to which I replied by saying that all the information I was telling him had come straight from my Dad, who was a retired GP at the time. Thankfully he didn't record 'health anxiety' in my notes and did reorder some blood tests for me, which showed that I was 'very low' in magnesium and vitamin D.
I really hope all the research you're doing is supported and valued by your GP and that you get the answers you need very soon, along with expertly guided treatment for your son.
Thanks "Bookish" also commented on another post where I mentioned having bloods done that the vitamin D (which is low) also can affect the thyroid levels, so as well as getting the print out from the Drs, I will start him on that as I still have supplies previously (in date) but just need to check dosage okay.I checked my sisters results, as recently had bloods but they are fine. It will be interesting to see my results.
Hi, yes I noticed there was another group but to be honest, its kinda what thing at a time but I will be finding out whether they are too high or low and whether theybgot testing last time. Will try and get a print out of previous results too.
I know it seems like a lot at one time but once you get your results post them along with ranges on the thyroid site and see what people say about them … You will get lots of good advice and don’t ignore thyroid issues because they can wreak havoc on your body and mind and many diseases have overlap symptoms with thyroid disease that is often overlooked even by doctors….. I know this all too well
Palpitations, breathlessness, panic attacks, anxiety , problems with stamina, hair loss and the list goes on … which can also overlap with other health conditions. Most if not all doctors test only TSH which is completely useless unless they test FT4, FT3, T3 and anti bodies and vitamins… I know it sounds crazy but it 100% possible and Im not saying this is your sons issue it just shouldn’t be discounted.
Pretty sure I read the TSH test was the "gold standard" and thats usually the only one used but did read about the others. I requested B6 but they didn't do that one so doubtful about the others but could ask for on re-test.
Not experiencing any of those symptoms but has cold/flu currently (like most) it has taken him off from school for 2 weeks. Pretty sure he got it from me and I was worse for about 2 days.
Hi Lady4 I hope you son gets treatment for his thyroid soon as I noticed it helped me somewhat I take carbimazole for mine when I was first diagnosed although I have Graves’ disease ( overactive) dx in 2011 and then hypothyroidism about 4 years after that but I am back to hyperthyroid again but FND dx 8 or 9 years after my graves diagnosis . This is why I do not believe we are listened to properly and this can get frustrating to say the least. I really hope your son gets stronger soon and is in better health overall and you stay well too as I know how stressful everything can get X Thank you for providing the information for the rest of us
Taking it Graves Disease is over active and under active is hypothyroidism, I hate that disease name, remember reading the literature and wanting to skip past that name, so morbid
As you mentioned you fluctuate is that because of the meds prescribed or external factors.
My mom was on meds for life "levothyroxide, think my sis mentioned 75 grams as she had two tablets but I know you have to take them at aroind the same time and before food if my memory serves me right.
Yes from what I hear, FND is dx and you don't get the same level of service or a holistic approach.
It truly is draining at times but being here, being supported, listened too and helping others is a positive.
Thank you Lady4 I probably fluctuate due to my meds. They don’t seem as bothered with me when I go hypothyroid. Even though it is agony I see a specialist once a year as they do change a lot think I have seen about 6 different doctors over the years and they don’t even take my bloods regular anymore either. But at least I’m staying stable in myself at the minute as it can get a bit panicky at times with anxiety mood swings and pain seems to be everywhere. Sorry to ramble but I just want you to let your son know to be kind to himself. If he starts getting worked up take a step back and breathe. I also listen to a lot of meditation to ground myself and take one day at a time. Although I am considering giving work up as it gets a bit much especially when I know I need to stay in bed, which I would have to discuss with my partner. But I have to keep going as only my income coming in at the minute X Such is life, anyway take care sending hugs to both of you 🤗
Thanks Westie, we have less than 3 months to exams and I am at a loss. He isn't experiencing anxiety etc and apart from this latest bug which I am going to have to request antibiotics for (prob sinusitis which dentist mentioned) no other symptoms have been shared but he hasn't gone back to sxhool this year yet.
Just before Christmas I told my colleagues I would be getting signed off for a while, as things become overwhelming esp when you think you have overcome one hurdle and hit the next and have to educate yourself on the latest poss dx. Like you say Drs don't bother anymore (we had two texts with separate blood results, no phone call to discuss).
I think you need to change Dr if possible, get a fresh perspective (someone that has knowledge in the field) and hopefully can address each concern independently but look at the big picture.
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