Hey. Im wondering if anyone can give advice. I am aware that your not professionals, but im going crazy while i wait for the referal.
I have an 11 year old child that has quite complex medical needs. For as long as i can remember he has heen suffering with horrible symptoms that no one has really had an answer for, most recently he was diagnosed with PoTs but by symptoms and postural sats only, im now wondering if this was a miss diagnosis.
I went back to our GP and basically begged for more help and investigation as he is really struggling. She ran loads of blood tests.
Vit D deficant although hes in prescribed vit D.
Cortisol is low, she didnt really say much about this.
And his thyriod, she did say that she was baffled and confused with his results.
The dr said to contiune the diary on how he is and to continue his prescribed meds with no change in strength as she wants him to he seen by the specialists, she didn't specify which specialist.
Does anyone have any idea or have you have similar results? Or an understanding on these results? I am just anxious with the wait more so because i see him struggle:
TSH: 0.553. The range for his age is 1.6-2.8
FT4: 10.2. The range is 10.07-17
FT3 was not tested.
Serum adjusted calcuim concentrate: 2.03. The range is 2.22-2.58.
Serum total protien: 69. The range is 60-80
Serum ferritin: 20.1. The range is 20-200
IgG: 11.70. The range is 5.7-14.7
His cortisol test was preformed at 9.20am and the result was 121nmol/L . Refrence range is 138-635nmol/L
His vit D: 19. Refrence range of the total 25(OH) D level is 25-80 ng/mL
His current diagnosis are
Heds. - hypermobility elhers danlos syndrome. DSM-5 social communication and behaviour disorder.
PoTs - i think maybe miss diagnosed.
Leg length discrepancy
Low blood pressure
Anxiety.
Sensory processing disorder.
Sleep disorder
Calcuim and vit D defiancy
Thank you to anyone able to reply.
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JayLee02
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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 have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask Doctor to test vitamin levels and thyroid antibodies
Elhers Danlos and autoimmune thyroid disease often linked
Just test TSH is completely inadequate
Low calcium linked to low vitamin D
Calcium levels should increase as vitamin D levels improve
Low vitamin D and low ferritin common with autoimmune thyroid disease
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Hey. Thank you so much for taking the time to reply. We are in the south west of the UK. I just copied what his print out said. Those bloods were done at 9.20am, earliest we could get. Havimg his bloods done are a challenge in its self.
I have asked for the dr to call me as i did read that having more thyriod tests completed.
I will check his print out to see if b12 and folate was done, i dont recall but ill check and if not request the dr for them to be done
Thank you. I will look up blue horizon, i was under the understanding they dint test children but i will look again. His diet could be better, its quite limited due to allergies and his sensory needs but we do implement fortified foods were possible. We also give him mukti vitamins and he is on prescribed vit D and calcium, his diet could be better but we have tried and failed due to his needs. We add fortified were possible and make smooties etc and he doesnt eat fruit or veg, we are trying.
Multivitamins are a very bad idea for all sorts of reasons.
* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.
* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.
* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.
* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.
* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.
* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.
* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.
* The magnesium you take - and just about everybody need to take it - should be chosen according to what you want it to do:
Magnesium citrate: mild laxative, best for constipation.
Magnesium taurate: best for cardiovascular health.
Magnesium malate: best for fatigue – helps make ATP energy.
Magnesium glycinate: most bioavailable and absorbable form, non-laxative.
Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.
Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.
Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.
With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D.
Hey, i was wondering if you can help as i am not sure how to proceed. My sons had 3 tests now all saying ingredients the same thing. Referal was done for him yo see a specialist, with the hope the specialist will be able to order more tests that the gp cant do. Well the specialist has refused referal on the basis that the results are slightly low but no cause to be seen, ans they want primary care to monitor however primary care are limited on what blood tests they can do and most of what he is needing they cant do. Im just not sure what i can do or were to go to get him help. I know blue horizon has the blood tests but gp said its pointless to pay as the nhs wont take them into consideration. Any idea or advice greatly appreciated
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
GP should be doing Full iron panel test for anaemia
If i am being completely honest they keep saying "are you sure he feels that way because he has sensory processing disorder?" Its like they are constantly doubting how he feels.
Honestly THANK YOU so much for taking the time to reply to me. He has dairy allergies so he does eat vegan substitutes and also he eats meat but prefers vegan subsitutes. We try to get green veg and red meat in him as often as we can. I email the thyriod uk now and ive written a note to mention haematology to the drs.
Hey. Im just copying what the print off said. Ill look at the nice guidelines. He does eat food containing eggs but not eggs like fried, scrambled etc. And yes the meat free meat is soy protien
Yes, I'm sorry, I see you've said above: The range for his age is 1.6-2.8
And yes the meat free meat is soy protien
Well, that could be a big part of his problem. Soy is a goitrogen. It impedes the uptake of iodine by the thyroid so that less thyroid hormone can be made. It also impedes the uptake of thyroid hormone by the cells. So, it's a double whammy. Stopping the soy protein might have a very positive effect on his health. But, I wouldn't expect a doctor to know that.
Yes i have researched that and i truly believe from his symptoms he has and the research that he may have a pituitary problem. His meat free options are only a few times a week but i shall remove these from his diet. Anything is worth trying
I saw his B12 result above. Is he supplementing B12? Because dizziness could be a symptom of low B12. Is he supplementing anything else? Are his other nutrients all optimal?
No supplements doe B12, the dr said they are in range and no need to. If i had better understanding i would supplement but gp telling me no and wait for referal
Vitamin D and calcium is supplemented as prescribed by the drs although no where near the dosage he should be on. But again gp just saying to wait. Folate and ferritin are in range but again only just in range. They are considering weather he has Postural tachycardia syndrome but now afyer all my research and talking to others i think his symptoms that are suggestive of that could infact be related to what ever is going on here.
I’ve come across several children and young people with EDS who have thyroid issues (I teach in a SEN setting) and many issues do overlap (eg fatigue, pins and needles, anxiety etc). I would definitely push for T3 testing/ antibodies, so you have a full picture of your son’s thyroid health.
Thank you for replying. It is veey challenging but after researching i do feel it is necessary for him to have further tests. The blood tests are incredibly challenging anf tramatic for him, but needs must
What these results suggest to me is Central Hypo - i.e. a problem with the pituitary and/or hypothalamus. Has he ever had a nasty bang on the head? Fallen on his head? Your GP has probably never even heard of Central Hypo, so that's why she is baffled and confused.
It may not be that, but, I think it should at least be considered.
Thank you for replying. My son had a very tramatic time at birth and he suffered damage to his head during labour and placed on the cerebal function monitor after birth as he had severe signs of hypoxicischaemic encephalopathy. His CFM trace was abmormal and fit the criteria for therapeutic hypothermia. And his CFM traced confirmed HIE hypoxicischaemic encephalopathy. Although a diagnosis was made (unknown to me at the time, only recently discovered this diagnosis) he is able bodied, can talk, walk, eat and does everything any other child can do apart from being slightly delayed and suffering with horrible symptoms we don't know whats causing them.. i can write what symptoms are troubling him if needed
In that case, it's inexcusable that they didn't make the connection between his thyroid lab results and his pituitary. His FT4 is very low, so his FT3 is likely to be even lower. And that's what causes hypo symptoms. Hypos symptoms are many and varied and horrible. And can be just about anywhere in the body because T3 is necessary for everyone of the trillions of cells that make up the body, to function correctly. Doctors tend to only recognise a very limited number of symptoms as being due to low T3, and are likely to tell you that are the others are "nothing to do with your thyroid". But they are more than likely to be wrong on that point.
The thyroid results suggest he could have a pituitary problem. The labs tend not to do fT3 results for GPS (nonsense but that’s the way it is). His low calcium could be due to low parathyroid hormone (PTH). The parathyroid glands are nothing to do with the thyroid, they are so named because they are next to the thyroid. His low calcium will cause nasty symptoms until the underlying cause is found and corrected. I would ask for an urgent referral to a paediatric endocrinologist, they can run more blood tests.
It’s likely his problems are congenital and not related to autoimmune problems.
Thank you. I have requested a referall but they say theres delays due to covid which i understand. We are also looking into private help but many dont wanna see him due to his age. Very frustrating. His symptoms are really horrible. Not nice to see him struggle so much
It’s ethical that some endocrinologists decline to see him are children should be seen by paediatric endocrinologists if possible. Obviously COVID is causing delays but I wonder if your GP could set up a provisional appointment and some blood tests get done. Even if a specialist can’t see him they could give advice and get things moving.
If he is under the care of a paediatrician maybe they could request endocrine advice and arrange for appropriate tests. Just trying to come up with ideas to get things moving.
Yes i understand, i have contacted both his community paed and general pead so i am hopeful between myself and sll the medical professionals involved now, we can get things moving quicker. I will be doing follow uo calls tomorrow to see if there is any updates. Its been 4 weeks since the last tests.
Probably not sensible to use only ferritin to determine low iron. Adequate iron levels are so very important for thyroid and pretty much everything else.
As others, I am just an ordinary patient. No training or skills.
POTS can improve with thiamine supplements best to start low and see. A good b complex would be great because all b vitamins work together, a bio active b complex is great. when my ferritin is very low I know my thyroid is low when I take right amount of thyroid meds my ferritin will go up all on it’s own. Also cortisol should rise on right amount of thyroid meds, when you test T4 and T3 you want the numbers in mid range not at bottom of the range. Life Extension makes good vitamins and I’m not affiliated with them in any way I just know they make good products, best of luck I hate to see kids struggling
Hi. I cannot offer you any help but I wanted to talk to you. I went through 6 years of two children in and out of hospital. It was very frustrating and traumatic. I wanted to say you are doing an amazing job. You have no choice but to advocate for your son. I have a son too. Trust yourself. Assert yourself and advocate for the tests you need. The squeaky wheel is what I was. Lastly, look after you. Find support and lean on everyone. You are the most important person in this fight. It shouldn’t be a fight but it is. I will be thinking of you.
His cortisol is very low for that time of day, the reference range is for the whole day, cortisol should be at the highest level first thing in the morning but then drop through the day. With his TSH result it could suggest an issue with his pituitary gland, this would also go with the POTS diagnosis if his BP is low. He does need further investigation for his cortisol levels, it could be that he has adrenal insufficiency where his adrenal glands are not producing enough cortisol, it could be that either the adrenal glands are compromised or they are not getting the message from the pituitary gland is not sending messages to the adrenal glands. His Vitamin D is still rather low as well.
If I was you I would be looking at all foods he is eating and eliminating anything with any additives, anything deep-fried, sugar and takeaways as you don't know what they add. I don't know how you can get him to eat real food but if he is eating other food substitutes he won't be hungry. Try Hardy's daily essential nutrients for a good multi. Look up the research on it. It is compelling. Cheap multivitamins have synthetic vitamins in they wrong form for some people but this one is more natural.
Hey, im sure you have the wrong end of the stick, im not sure where you have read that i feed my child fast foods, sugar and deep fried food? but i can assure you i dont, yes his diet can be better and isnt as varied as it should, but sadly we have tried and his food aversions are severe, so instead of making meal times a traumatic experiance that could effect him long run, we give him home cooked meals, fortified foods, for example we buy a loaf of bread with added vitamins and calcuim, all advised by his dietian. Also although he doesnt eat much fruit and veg, but we make homemade veg soups and smoothies.
Anyway thanks for commenting, i do think there could of been better ways to ask about my sons diet, but there you go.
My daughter’s fT4 was out of range too but everything else in range. It was due to an iron deficiency. After seven months of iron tablets her fT4 is back in range albeit lower than I’d like. So I’d recommend looking into low ferritin levels and getting them optimal. It also caused joint pain and some other symptoms.
Her vitamin D was fairly low too so she now uses the Better You vit D & MK2 mouth spray. It’s definitely helped.
I used Blue Horizon for both children so you should be fine (in reference to a post above 😊).
It’s heartbreaking and very stressful watching children struggle. My heart goes out to you and I sincerely hope you find the right help soon xx
Serum adjusted calcuim concentrate: 2.03. The range is 2.22-2.58.
PTH - 8.1. Wasn't told the range.
According to wikipedia (which I realise isn't a reliable source)...
PTH can be measured in the blood in several different forms: intact PTH; N-terminal PTH; mid-molecule PTH, and C-terminal PTH, and different tests are used in different clinical situations.
The average PTH level is 8–51 pg/mL.[29] Normal total plasma calcium level ranges from 8.5 to 10.2 mg/dL (2.12 mmol/L to 2.55 mmol/L).
With your son's PTH (parathyroid hormone) being only 8.1 it is very likely that his result is right at the bottom of the range. But you weren't given a range or units of measurement to actually check this, so we are left to speculate.
Clearly your son's calcium is extremely low and this in itself causes lots of unpleasant symptoms, many associated with muscle contraction problems. At it's simplest, low calcium will cause severe cramp - but there are far more problems and symptoms associated with the condition than that. Calcium deficiency is called Hypocalcaemia.
The combination of low calcium and low PTH is indicative of hypoparathyroidism. Despite the name this isn't a thyroid problem. The parathyroid glands (there are usually four of them) are behind the thyroid. Their function is to produce parathyroid hormone which is required to control the calcium level in the blood. Vitamin D gets involved in this somewhere too.
His cortisol test was preformed at 9.20am and the result was 121nmol/L . Refrence range is 138-635nmol/L
Your son's cortisol is extremely low, and this suggests he has some form of hypocortisolism or adrenal insufficiency. There are several different types of adrenal insufficiency. Addison's Disease is Primary Adrenal Insufficiency and is caused by an adrenal problems.
But there are two other kinds of Adrenal Insufficiency - secondary and tertiary - and they are caused by problems with the functioning of the pituitary (secondary) and the hypothalamus (tertiary).
It seems to me that many of your son's problems point to a problem with his pituitary and/or his hypothalamus, which are next to each other in the brain (in the area behind the nose).
Pituitary health needs to be tested by testing the various hormones that a healthy pituitary should produce - and there are a lot of them :
Thank you for taking the time to respond. I appreciate it so much. Since posting i had a text message from his gp stating tht PTH range noted is 10-55pg/ml. I have sent some emails to nhs pead endocrinology specialistist secretaries at different hospitals. To see if anyone has an idea on referal but also i have emailed some private hospitals and thyriod uk. Im trying to be pro active, take everything in to try and give me some knowledge. I was going to get some tests with blue horizon but i rather not waste the money if the nhs are insisting that they won't take it in to account. Rather spend the money on seeing someone if im honest.
From the research i have done and although it is a minefield i believe he has a putruity gland issue based on his symptoms and research but im not amedical professional. I just want to be listened to by medical professionals and get some help. It amazes me how hes still managing daily but its a struggle for him. My gp although is trying i don't think they are being persistent enough to get him seen.
There are several references on that link and others on hypoparathyroidism to the problems of magnesium deficiency. Magnesium deficiency is extremely common in the general population.
Doctors might do a simple test of magnesium levels in the blood, find out it is in range, then tell the patient the result is fine. This is not always true, and magnesium testing is very unreliable and can't be trusted.
The body should have magnesium in tissues throughout the body as well as in the blood stream. The body prioritises having magnesium in the blood, so if that runs low it steals it from other types of body tissue. The blood test will often tell you that magnesium levels in the blood are fine, but other tissues in the body could be seriously deficient and you simply can't tell from the test result.
Magnesium deficiency is a classic cause of cramp and other muscle contraction problems.
For people who have symptoms suggesting magnesium deficiency it is safe to supplement magnesium as long as the patient has healthy kidneys. The body will expel excess magnesium in urine via the kidneys.
In people with poorly functioning kidneys excess magnesium might not be expelled and they could end up suffering from hypermagnesemia.
In someone with all the health problems that your son has magnesium supplementing would need to be monitored by a doctor. But you do need to be aware of the drawbacks of the test. Also note that magnesium supplements vary enormously in how well the body can absorb the magnesium, so choosing the right supplement can make an enormous positive difference.
Some links on magnesium that you might find helpful...
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