My brother who has learning disabilities and autism was diagnosed with hypothyroidism in 2008 he has been on 25 kg since then. His case so his GP said it's a little strange because when he has a blood test his blood results show that he should be taking more levothyroxine. But unfortunately can't even taking a quarter of one tablet i.e. 25 g extra causes him to be ultra sleepy no energy grumpy I just feel dreadful also his heart rate goes through the roof. Fast forward to Feb this year and his health has been dreadful all thyroid related chronic constipation feeling very heart glands in his arms and legs all they do for the chronic constipation Is pumping in with the laxatives. Obviously his thyroid isn't working properly and he can't take the extra tablet that they think might balance everything out and they won't let him be seen at the thyroid clinic by a Endocrinologist. Their excuses, is he'll have to wait for months for an appointment. I will be contacting his doctor on Wednesday, she's working from home and that's her next appointment available.I'm going to say if you don't do an referral I'll have to pull him away from the surgery find another doctor how will. I know it's also dramatic but, he's been so ill he told me he wants to die. Just because he has learning difficulties and autism as I said doesn't make him any less of a person, he has a right as we all do to help.
Can't get my brother to helping needs - Thyroid UK
Can't get my brother to helping needs
Welcome ! Great pic !
Magnesium and VitC could well help the constipation. It is possible that if your brother has low nutrients then it could be causing poor Levo activity. Important to have good levels of B12 - Folate - Ferritin - VitD. Good for all these to be optimal and not bumping along the bottom of the range.
The above website also has details of Private Testing done in the comfort of home ! Kits sent to you and results by email. Used by 100's on this forum. Report back in a new post and members will help out with interpretation of results ... FULL Thyroid testing available - FT4 - FT3 - TSH and anti-bodies TPO & Tg.
Hello Marz, Thank you for your reply, first of all please excuse my grammar in my original post. I didn't type it (that's my excuse) spoke my question so will blame that!! That is a very good theory the folate would that have to be done through the GP.
GP's can do B12 - Folate and Ferritin tests but seemingly doing less and less VitD testing. See the link in blue above for more information on testing. Thyroid Testing falls short with the NHS - the very important T3 rarely done.
Thank you will do, your help is much appreciated, Anne.
I can't take all my levothyroxine in one dose. I have always taken 2 or 3 doses during the day.
Maybe you could try this with your brother.
Hello Laltoot, thank you for your reply and fortunately we have tried that one and it doesn't make any difference.
Have you tried different brands of levo? - They're not all the same: the fillers are different eg Teva is lactose-free but contains mannitol: some people really prefer it; others are indifferent; but LOTS have a bad reaction to it. Got to be worth trying different brands and seeing what he prefers - then stick to it (and get the brand put on the prescription) x
Hi fuchsia pink, funny you should say that I did notice that there was a different brand recently, i've got one here by Mercury Pharma, through the other box away recently that he's had for awhile. Good theory though, will look into it. We went to a different chemist that was nearer when Covid just started, obviously chemist by chemist they have different brands👍x
He needs FULL thyroid and vitamin testing
Can you get private testing done?
He’s likely so extremely hypo that his body reacts to even tiny bit extra. He may need beta blockers to steady heart while dose levothyroxine is increased slowly upwards in 25mcg steps
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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Low vitamin levels also linked to being extremely hypo
Ask GP to test vitamin levels
Is he on any other medication?
If so what?
Or any vitamins?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Medichecks - JUST vitamin testing including folate - DIY finger prick test
medichecks.com/products/nut...
Medichecks often have special offers, if order on Thursdays
Hi Slow dragon, Great lots of info there thank you very much, as she can tell his GP is useless and the other GPs he saw within the summer who were covering three in fact were just a poor. As she can tell his GP is useless and the other GPs he saw within the summer who were covering three in fact were just a poor. Didn't know anything about these issues we were never pointed in that direction. They did do full lots of blood tests twice over the summer. They told me everything is fine re his blood results. Then a few months ago when I phoned up to say that he is getting no better his doctor said well if its thyroid wasn't working properly does cause constipation, and his bloods were a little on the low side. Like everybody else on the planet this pandemic is causing mayhem throughout the health service. Also people with autism experience pain in a different way from the rest of us it is difficult for him to realise what is happening to him. Obviously he knows he's not well. He has beta-blockers because sometimes even on the dose he is on his heart rate goes through the roof, his previous doctor said that his body gets stressed even when he sleeps.His heart rate goes up which wakes him up and he panics, then you have to reach for the beta-blockers. The only other medication he is on is Citalopram 10mg twice a day.
I'm sad to hear about your brother I wish him well, I to have been written off by my doctor even though my private blood test showed trouble, he won't refer me to an endo either, I've been feeling suicidal for 4 years I'm sorry you feel like that he said, by chance i met someone with the same condition who gave me some t3 and referrd me to the forum, it was a miracle I'm on the way trying to find an Endocrinologist a consultation starts at £200 AND HOW AND WHERE TO GET t4 itsA Worry, wishing well
Hi Poppyfaery, thank you so much for your reply, you also have had a rough ride for your health. I am sorry you have been through so much anxiety I know exactly how you're feeling. We went to see my brothers GP today and if it wasn't for this website I would've never of known about the ferritin, B12 testing et cetera that could be done, no one has ever mentioned these things to me. I asked again if my brother could be referred to a endocrinologist, and she again said no. As I mentioned in a previous post when he has his blood test taken it shows he should be on a certain amount of levothyroxine but he is unable to take this amount because if he did he would just be semi unconscious believe it or not he gets that bad. This week has brought on new symptoms, he feels like he has had a blow to his throat and his neck feels very painful constant sickness through the constipation. Found an old GP letter from a few years back that said my brother's condition was very difficult to treat despite medications. I just don't know why the help isn't there for anyone with hypothyroidism if their body isn't responding well. I myself have chronic migraine, I never encountered any problems throughout the NHS not being referred to various clinics the one where I live was no longer able to help me so I was referred to London University College Hospital no problem at all. Re my brother his blood results should be back in the couple of days I really hope it shows some clue to why he is this bad. Sorry what is T3 and T4.
T4 is thyroxine I made a mistake saying that im OK with that, t3 lyothronine is to expensive for the nhs to prescribe I had to have a private blood test to find out that my t3 was low I'm trying to find some, i must say I had citeloprlram I am bi polar and had a breakdown 4 years ago that and all the rest they gave me made me worse each one I had to try for a couple of months it was soul destroying, if you have no money you've had it, wishing well again x
First of all Butternut1920, I am very sorry for you and especially your brother and the fact that's he's so unwell.
If the picture above is a picture of you and your brother I'm glad that you are taking things into your own hands.
For a doctor to prescribe 25mcg of levothyroxine just goes to show how inept he/she is and it's time that your brother has some decent care and attention.
25mcg is an incremental dose not a starting dose unless the person is very poorly with heart disease.
On this forum, we have come to the conclusion long, long ago that the medical professionals have very little knowledge of how to treat those who're hypothyroid so that they don't become more unwell due to the lack of thyroid hormones.
Request a new blood test - and ask for a Full Thyroid Function Test - TSH is insufficient.
Do insist in case the doctor doesn't want to. He/she surely can test these as your brother has been suffering too long:
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
The test has to be at the very earliest possible - even if you make it a few weeks ahead. It is a fasting test (he can drink water) and when taking thyroid hormones, you take them after the test and not before. Wait an hour after taking thyroid hormones before eating as food would interfere with the uptake.
Also request B12, Vit D, iron, ferritin and folate as we are usually deficient and everything needs to be optimal.
Put his results on a new post for comments and remember to put the ranges.
Hello Shaws, thank you for your reply, on Wednesday after I phoned up and spoke to his doctor ( around 11, and he had already taken his Meds at 8 am) she said to bring him in to the surgery at 2:30 that afternoon. She took a blood test and said she would phone me with the results. Obviously we haven't heard anything yet, on Monday morning when I can get through, I will ring and find out if bloods results are back, I did ask about the ferritin and B12. I'm expecting his doctor to ring me and not just for the receptionist to give me the results. I am also going to ask the receptionist anyway if I can have a printout of the results, hopefully after I've spoken to his doctor, if that makes sense! I will post the details. By the way, again i asked his doctor if he couldn't be referred and again she said no.
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