My mum is 89 and has copd, heart failure and hyperthyroidism. In the last five months she has been to hospital four times. She's hardly slept in that time. Only on a few nights has she had more than two hours sleep. She recently had her carbimazole raised from 10 to 15 mg per day as her hormones were still going up. The bumetanide seems to be having a bad effect on her, making her feel extremely ill. I've told doctors and nurses dozens of times that she is desperate for sleep but they just ignore the problem. I'm getting really worried now. She just sits there like a zombie half the time with her eyes drifting around. Several times she has broken down in tears, because she is so desperate to sleep. She now hates going into the bedroom because she associates it with countless nights of no sleep whatsoever. I'm so worried about the damage it is doing. My GP is useless, seeming to think any side effects of the drugs are mostly in my mum's head, but surely the older you get, the more chance there is of side effects and adverse reactions? It took ages to get the doctor to change from furosemide to bumetanide, so god knows what will happen if I ask to try torsemide. I'm her full time carer and I don't sleep much now either. We are both near the end of our tether. I've tried lemon balm and motherwort and they helped her get a few hours for a couple of nights but have now stopped working.
Carbimazole, loop diuretic and extreme insomnia - Thyroid UK
Carbimazole, loop diuretic and extreme insomnia
Do you have copies of her blood test results? It might be helpful if you posted them here, with the ranges, to give people a better idea of what we're talking about.
How was her hyperthyroidism diagnosed? What tests did they do?
Thanks for the reply. They took tests when she was in hospital and she's had a few since then with a nurse coming to the house and taking a sample. My GP doesn't give the results out, he just says they are going up so needs more cabimazole. Yes, he's a useless doctor and has never even considered doing a home visit even though she is housebound.
Most of them are. But, if you live in the UK, it is her legal right to have a print-out of her results. Ring the surgery reception and ask, don't just wait for the doctor to hand you the results, because he never will.
Thanks, I will try that.
As you're her official carer, you should be able to go and pick them up, with suitable identification. But, be firm. Don't let them fob you off.
I just picked it up:
Serum T4 = 26.7 pmol/L
Serum TSH = = 0.07 mU/L
There are tons of other readings.
OK, do you have the ranges for those readings? Results without ranges mean nothing, which is why I said get a printout, because the ranges would be on it.
Was there an FT3 reading, or anything that looked like antibodies - TRAB or TSI?
Where there any nutrient results - vit D, vit B12, folate, ferritin?
Nope, nothing about a range or vitamins. Is there any way to send a scan?
Click on the downward-facing arrow, under your post, where it says 'more'. That will take you back to the page where you wrote your post. At the bottom, it says 'add photo'. Click on that and follow the instructions. 
I just attached it, but it seems to be much lower resolution than the original.
OK, so they're only testing TSH and FT4, and - yes - the FT4 is rising slowly, so it looks very much like Grave's, but there are no antibody tests.
I agree with SlowDragon, you really do need to get them to test her vit D, vit B12 (although if you're giving her B vits, you won't get a very accurate result), folate and ferritin. I know you're giving her vit d and B vits, but you do need to know if you're giving her enough or too much. And, ferritin could be pretty low, as well, and you really shouldn't supplement iron without tests.
It's time to get tough, I'm afraid. Her GP is being very negligent with a vulnerable old lady. Time to get to grips with him. I had to do the same with my mum, and insist they get her into hospital on the spot! They were just going to leave her to rot. I wish I could say I reported them all and wrote copious complaints after she died, but I was too devastated to even think about that. Now, it's too late.
Thanks for the reply. Very sorry to hear what happened to your mum. I really have a low opinion of doctors and hospitals. I think I will change my doctor to someone who will come out and see her. I've already filled out the forms and will take them tomorrow morning.
Ask GP to test her vitamin D, folate, B12 and ferritin
Low Vitamin D and low B vitamins are both linked to insomnia
Very common to have low levels with thyroid problems
If vitamin D is low, B vitamins may be too. As explained by Dr Gominack
healthunlocked.com/thyroidu...
Thanks for the reply and link. My GP is very hard to communicate with, and I'm fairly sure he would dismiss doing tests like that. He doesn't seem to believe in vitamins or side effects. I give my mum a really good B complex and she takes 5000 iu of Vitamin D. I wondered about the B12 as well, so I bought a bottle of liquid sublingual high dose B12, a mixture of methylcobalamine and adenosylcobalamine. Unfortunately that gave her fluid on the lungs which was very distressing. So I'm going to try methylcobalamine sublingual pills cut in half to see how she gets on.
Brian your story is heartbreaking to hear and I hate the way drugs have such an awful effect on people, but they're expected to keep on taking them!
Mum is nearing the end of her life now and needs to be as comfortable as possible for the next few years/months/weeks. I'd get a different doctor to see her. Please do as your heart tells you. My dad died in hospital after a stroke and he desperately wanted to go home and be with his cat. I wish I'd scooped him up out of his hospital bed and done that. I now live with that regret and know I should have done more.
Please demand that your mother has something to help her sleep and I wonder if there's something else she could try instead of the bumetanide. It's down to you Brian, please fight on her behalf.
Big hug my friend and let us know how you get on. Here for support any time.
Jean
Thanks for the reply. Really sorry to hear about your dad. I think iatrogenic illness and over prescribing are a scandal in the the UK and US. I just don't understand how every time I've told them about the extreme insomnia they just basically ignored me.
It is so difficult to distinguish cause and effect with several ongoing diseases. The heart failure and copd are progressive chronic diseases which both cause fatigue, lethargy and breathlessness. If your mother has had side effects with both furosemide and bumetanide it is extremely likely that she will with all loop diuretics and unfortunately if she is requiring bumetanide she has significant heart failure. To then get hyperthyroid on top seems most unfair. I would ask your gp to refer your mother to the hospice, which is not just for end of life care, but is also an expert resource on symptom management. Undoubtedly your mother needs her hyperthyroidism to be managed properly, but she needs someone who can look at the big picture and ensure that she can get the maximum quality of life, not just ‘specialists’ who micro manage their individual disease processes. End stage copd and end stage heart failure can mean several years of life, not months as for cancer, so please do not be put off by the idea of hospice input. Others on the forum will be able to advise more on the hyperthyroid. Best wishes to you both.
It's more unfair than you think. I was caring for my mum for years, but at the end of last March we were evicted by my landlord because he wanted to sell the property. I asked for a month or two more to find a suitable bungalow, but he said no, in the full knowledge that my mum was old and had COPD. The stress for my mum was phenomenal. On the actual day of the move she collapsed and rushed to hospital. This is when the extra problems of heart failure and hyperthyroidism started. I'm now looking after my mum virtually around the clock and I'm 100% sure it was the stress of being evicted that caused those new problems.
If this was a reply for cjrsquared , she won't see it because you didn't click on the reply button. I've notified her for you.
I think you're probably right abut the stress causing the problems. When my aunt could no-longer look after herself, and was going into a care home, on the day of the move she had a stroke that killed her out-right. I'm pretty sure it was the stress that killed her, she didn't want to go.
Dear Brian,
I'm so sorry to read of your situation.
I think the suggestion of some hospice input an excellent idea and I've no doubt that your housing issues were a contributing factor in your Mum's declining health.
My thoughts are with you, and I sincerely hope you and Mum can find some relief and comfort in the shortest of time.
Having read your post, I have no words to express my upset and concern for you both :
Thanks very much for your kind wishes. I will try a new doctor and if that doesn't help I may try contacting a hospice.
My brother was very happy in a hospice. It hurt me visiting him there, as I thought he should be at home, but I was wrong - my mum and I were taking care of him, and I initially thought that " we should be able to do this " .
Luckily we had a doctor who could see through the bravado and pained faces, and did what was right for my brother, and with hindsight, all of us.
The hospice was such a lovely happy, relaxed place and my brother found kindness, comfort and holistic treatments that neither our Mum nor I were able to facilitate and to some degree we were too close to see everything clearly.
If carbimazole alone is failing maybe try getting hold of a powdered form of acetyl l carnitine. It is available from health food suppliers and not on prescription as it is an amino acid that 'filters' thyroid hormone to slow down the uptake in the cells and it is also very good for the heart. It is very gentle as it is something found in all lean meat and fish, but, we sometimes fail to get enough if we have a compromised gut. You can add it to a glass of anything cold she is drinking, but be sure to disguise the taste as it is supposed to taste a bit like mild vinegar. Dr Myhill recommends it for her CFS patients that have heart problems.
ncbi.nlm.nih.gov/m/pubmed/2...
naturalendocrinesolutions.c...
For insomnia, relaxation and heart support magnesium is fabulous, but if taking oral forms please check for contraindications with her meds. Also, some forms of Magnesium are pretty useless, so a citrate powder taken in v small doses to begin with is quite good, but no good if she has diarrhoea or severe IBS. My mum often uses a topical form of Magnesium with lavender in to help her sleep by Better You.
Thanks for the reply, yes I've been giving my mum a mixture of about 250 mg of ALC and 750 - 1000 mg of straight carnitine for a couple of months, but it hasn't helped her sleep. I give her magnesium glycinate and she has a magnesium chloride spray which she puts on at night. She still can't sleep though.
How frustrating. Like you, I would question the side effects of her pharmaceutical cocktail. Without knowing much about these and their interactions it is hard to suggest anything potent. I sleep soundly if I dramatically limit the amount of sugar I consume after lunch. The problem with hyperthyroidism is that the gut is working too quickly which can cause blood sugar issues. Michael Mosely (tv doc) tried to sort his insomnia out (he has diabetic markers) by taking inulin fibre with a drink at 9pm - it seemed to work for him. The prebiotic manages to keep the gut happy overnight, so worth a try?
My mum has been quite low carb for many years so her blood sugar shouldn't be a problem. She certainly isn't pre diabetic/insulin resistant or anything. I'm giving her taurine to see if that helps, because I saw a study where it can become depleted in hyperthyroidism and I know old age can cause a deficiency too, so the two together could be making her extremely depleted. I also read that a deficiency can cause insomnia. I really hope it helps.
I agree with taurine; taurine and magnesium work together pretty well - Dr Carolyn Dean (The Magnesium Miracle) recommends this combination. Also for magnesium to work you actually need p5p (b6 in active form) so maybe that'd help, but I guess she's already having a b complex with it in? When I switched to methylated b vitamins neuropathy went away - but too much b12 and folate can be overstimulating - this doesn't seem to apply to p5p though.
selfhacked.com/blog/vitamin...
Another thing that could be overstimulating her is high dose vitamin d unless a comparably large amount of magnesium is also being taken. I completely underestimated the quantity of magnesium I needed when on vitamin d - I suspect that contributed to my insomnia at one time which is why on this forum where a lot of people take vitamin d it's the first thing that springs to my mind for insomnia. My vit d levels are good now, so I just take a maintenance amount.
easy-immune-health.com/magn...
Thanks for the info. Yes she's taking a B complex. I have to be careful with the B12, because I gave her a sublingual lozenge broken in half a couple of times to see if it would help and around an hour or so after taking it she coughed up clear foamy sputum (sorry if TMI). I then read on a medical site that B12 can cause pulmonary oedema as an adverse reaction. So I'm too scared to give it to her now. I gave it to her because I read that hyperthyroidism can increase the need for it and that it can help with sleep disorders. Hopefully the very small amount in the B complex will be enough. I didn't know that vitamin D could cause insomnia though; I'll give her more magnesium from now on. Thanks again.
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