My partners brother is on 75mg daily of thyroxine, he’d gained a lot of weight, face & eyes are puffy, and he’s taken to bed a lot.
My partner pushed for thyroid bloods 2months ago and TSH was 5.7, gp didn’t up thyroxine. Bloods have now been repeated and TSH is 9.5 and still gp hasn’t taken action.
Only TSH was tested.
My partners brother has special needs and we’re concerned he’s being totally overlooked.
His consultant put him on an upper drug to try and reverse his refusal to get out of bed.
This has resulted in him being elated and being given lorazepam as a PNR.
Please give advice for my partner who will go to the doctor on Friday with him.
What should he ask for? And what should he look for in blood results? Also should antibodies be tested? Thanks in advance of any advice 🌸
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Suin
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In the UK, doctors have been taught not to treat thyroid disease until TSH reaches 10, however, this is well over the normal range. As you have discovered, patients feel very unwell while enduring the wait for treatment and end up on a variety of other meds that will not resolve symptoms because they do not treat the root cause.
Yes, he does need antibodies testing, TPO and TgAb thyroid antibodies. Also ask for TSH, FT4 and FT3.
In addition request vitamin D, B12, folate, ferritin to be tested as all can be low in subclinical hypothyroidism.
Ask for a trial of Levothyroxine now if antibodies are elevated. Hopefully with the help of a new doctor he can get off the other drugs that may have unwanted side effects.
also his tablets all come in a pack and are all given to him in the morning together. As he’s in supported living my partner has little control over many things, including him eating directly after his tablets are administered.
also his tablets all come in a pack and are all given to him in the morning together
That wont help. Levo needs to be taken 2 hours away from other medication, but I don't know how you get around that when in a supported living situation. Another member has the same problem with her brother, ShinyB do you have any suggestions?
Suin I really wish I could say something constructive... My brother lives in full time care and although the home manager is sympathetic, they are not allowed to do anything different to what the GP tells them. I'm not so familiar with supported living. nightingale-56 may have some ideas to help?
However, I know my husband's daughter's levo had on the patient info leaflet now for it not to be taken with food. I can't recall which brand that is though, and I know the local surgery gives out whichever brand of levo it gets hold of in any particular month, so I'm not sure how helpful that is.
Apart from that, I fear it's a case of keep emphasising the importance, ask for a meeting, repeat at them till you're blue in the face, ad nauseum
I'm a bit foggy brained so forgive me if I'm not thinking clearly today. I'll pop down some other random thoughts that might help..
If his TSH has risen from 5.7 to 9.5 in two months, then he obviously needs an increase. He also should have thyroid antibodies tested as these can cause fluctuations.
Use the Prof Toft statement you've been given in another reply.
I never got more than a TSH from my GP, and it's the same for many many patients, so I don't actually think it's a case of someone with special needs being overlooked. HOWEVER, you can put it in those terms to the GP which might make him buck his ideas up a bit. It might be worth throwing the phrase 'duty of care' in to the conversation with the GP. Or even 'benign neglect' IF you feel this is the case.
Ask the GP what his reasons are for how he is handling the brother's health issues.
Who is the consultant? Why is the brother under him? I'm wondering if it's a psychiatric consultant as my brother is under one (to treat his epilepsy... go figure?!).
You could perhaps call a best interests meeting, to include the consultant, the GP, the manager of the home. Has he got a learning disability? You may be able to get someone from the local Learning Disability team to get involved. Again, I'm not familiar with supported living but I think j_bee is.
As the brother has special needs and may not be able to speak for himself, it may be worth pushing the doctor to run as many basic health tests as possible, eg vit D, Vit B12, folate, ferritin (all of which have an impact on thyroid health).
I don't know if it's relevant in the brother's situation but I have become my brother's Relevant Person's Representative. It doesn't give me much clout to be honest, but I bung it in to conversations and am listened to a bit more than before
Sorry if my reply is a bit waffly and disorganised. Not thinking straight today!
Thanks So much, so many relevant points, the sharp rise might be due to the second results being taken in the morning fasting ? The first one was afternoon after eating. Yes I myself was unable to get go to do more than TSH, so I suppose I don’t mean he’s being overlooked because of his special needs, but they’re messing him up in a major way, with all meds he is on.
We keep wondering what would he be like if he was off them all, antidepressants respidrone and more.
Yes it’s a psychiatrist he’s under, he’s almost 52 and never been assessed for autism, he’s on a 2 yr waiting list at present.He has a learning disability,(my partner says his mum was told he has a learning age of 5,) so that’s good advice about disability team. Social worker gp and staff all seem to ‘react’ instead of ‘act’
So while he’s lie in bed 24/7 they seem happy enough.
Involved relatives DO make a difference, but it can feel like a constant battle, eh? My main tip is to put everything in writing and diarise follow ups!
The home my brother has been in for the last ten years is really good, but prior to this he was in some pretty horrendous homes. The one before we are convinced used to drug/sedate him for an easy life. Makes me see red when I hear about poor or lazy care, grrrrr.
I agree about all the meds. My brother used to be on so many different drugs and you worry about the cocktail of side effects and interactions. Where he is now they have managed to get him off all the drugs bar his epilepsy drug, and even that they have reduced right down.
Brilliant your brother getting off all the other meds, I think this is what we need to aim for. Out of nowhere my partner noticed that they’ve decided his brother is bipolar, on paper.
You just wonder how these conclusions are reached with no assessment whatsoever.thanks so much for your support. 🌸
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show the GP. Personally, I wouldn't leave the consulting room without a prescription for a higher dose, and if necessary I would involve the Practice Manager and present him with Dr Toft's article.
Nanaedake has listed all the tests which will be useful for a full thyroid and vitamin/mineral picture at this stage.
If his T3 is tested, it's more usual for FT3 to be tested here in the UK, although we do sometimes see Total T3 results on here.
If FT3 is tested and the reference range is 3.1-6.8, then most people would feel best when their level is around 5.8 plus - that would be the upper quarter of that range.
I’d have thought someone who is already on thyroxine would have had an increase in dose when TSH is out if range.
Which is what Dr Toft's article alludes to.
Also, more evidence about where TSH should be here pathology.leedsth.nhs.uk/pa... and scroll down to Thyroxine Replacement Therapy in Primary Hypothyroidism and in the box you will see
Suggest your brother has serious discussion with supported living to administer his Levothyroxine on its own either very early morning or last thing at night
It's well understood in medical circles that Levothyroxine must be taken on empty stomach and no other medication at same time
Thank you, it will all have to come from doctor probably. Supported living gave him his meds before he got bloods done, my partner had asked them to leave until after bloods. They said doctor hadn’t said to withhold meds until after bloods. They did agreed to let him fast for second blood test.
Hi Suin , ShinyB has given good advice and I am not sure what more I can give you. I am having problems with my son's care manager taking over his health appointments at the moment, when she knows nothing about his conditions. You could contact (and join) your local Carers Network as they are a mine of information and know the right people to confer with. I rather feel that this GDPR thing has confused a lot of people. The Learning Disabilities Nurse, who should be attached to your local hospital will also be able to help. Social Services are the obvious people to contact and discuss any problems with. I wish you luck with it all.
I personally didn't find my brother's social worker any help with regards to the referral I'm trying to get for him to Prof Chatterjee's clinic. She was sympathetic, but said 'oh we don't get involved in anything on the medical side.'
ShinyB sorry to hear you haven't heard anything from Prof Chatterjee's clinic yet. Suin , my son's carers do at least give him his Levo an hour before they give him breakfast, but in that hour they let him lie down again, so goodness knows whether the tablets has gone down properly. Other than that they are the same as your Husband's Brother's carers, they will not leave Levo until after blood test as GP has not told them to. I despair! Please ask if there is anything else I can help with. I agree with ShinyB that Social Services do not help with a lot, but this time it has gone to the top of Social Care and I have received a very nice email. Hope all the words in it are meant!
And yet they pay out every single year on a DOLS assessment for my brother, when it's 100% clear he will always need these deprivation of liberty safeguards. Absolutely crazy, when money is needed desperately in so many other areas. Grr.
ShinyB I have never heard of a DOLS assessment, but presume myson must have this as well. I will have to ask if this is done. Those in charge (?) do not seem to understand that their condition will not get better!
I've only heard about most of these things since taking over from my mum as main point of contact. The DOLS applies to people who are in a care home or hospital and are 'deprived of their liberty'.
When the DOLS assessor rang me for my input, she agreed it was crazy that it was done every year with every single person - apparently there was a court case to do with someone being deprived who shouldn't have been, so the knee jerk reaction was to assess everyone every single year. She told me there are discussions in motion in parliament to look at it more realistically. I won't hold my breath just yet....
Thanks nightingale-56 we’ll take heart from your advice, it’s a minefield just. The disability SW has been good to a degree, but we will attempt the learning disability nurse and carers network. When my partner said he was concerned about his brothers weight gain, the gp said sure he has weight on himself. Also that there’s a good hospital nearby 😶
Thank you all for advice, it was a trainee Gp my partner seen with his brother, he agreed to up his thyroxine from 75mg to 100mg daily. To advise staff it be taken 1 hour before food and 2 hours away from other meds. His T4 was 17. He agreeed to retest I. 3 months, I hope at that stage to push for more bloods. He also has referred his brother to the dietitian. So for now we’ve had some movement at least. It’s a start 👌🏻
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