I am doing all I can to help support her and help calm her down.
She is 80 years old.
*She suffers with neuropathy in her feet and calves, particularly on the right side.
*She has unexplained pain in her right side, above waist height.
*She has been diagnosed with atrial fibrillation.
* She can have high bloy pressure
* It was discovered that she had too high a level of calcium in her blood and further investigation deemed it necessary that she should have one parathyroid gland removed. She had the operation just 8 weeks ago now... And feels just "worse ever since".
* She is hardly sleeping. If she sleeps, she wakes at about 3 - 4am and experiences a panic attack in the manner of feeling as though she has a big boot pressing down on her chest and she can't breathe.
*She is getting to the point she dreads going to bed for fear of experiencing these negative stressful emotions.
* She is now experiencing ever worsening panic attacks, even going out for coffee with her friends... Currently she is seeing a councillor once a week.
*She is feeling exhausted, lifeless, like a "zombie" - quote.
*She has terrible headaches.
* She feels very dizzy and unsteady especially upon rising.
*Her limbs feel so weak, she feels absolutely dreadful.
*Currently she even has pain in her right cheekbone beneath the eye.
*Having been diagnosed this year with macular degeneration, she is having to have painful injections into the affected eye...so she is wondering if the cheekbone pain is related?
*When she closes her eyes she has "the strangest sensation of seeing waves behind her eyelids"... something she's never experienced before taking all these medications - listed below.
Having sat with her this evening, her conversation was constantly revolving around how stressed she was over the cocktail of medications and how she feels she needs to stop taking them, because she didn't feel all these sensations before she was put on them.
The Heart Consultant prescribed them and then the GP doubled up on his recommended dosage, which a subsequent GP took her back down to what the Consultant had ordered.
She is currently extremely distressed.
Everybody she sees is simply looking at her through the lens of their own specialism, without necessarily thinking of the other issues she is dealing with.
She agrees with me that she should have her own private blood tests done to have a better more concrete image of what may or may not be going on. I think starting with proper T4 and T3 tests would be a good start. The Heart surgeon seems not to be interested in any connection with concerns over thyroid function with relation to the heart - from what she told me 😔. He said that her thyroid was "perfect after having the parathyroid removed" ??? How he could divine that beats me!
These are the meds she has by 'reduced down' to.
Lisinopril10mg X 1daily.
Verapamil 240mg X 1daily.
Apixaban 5mg x 2daily.
Atorvastatin10mg x 1daily.
Doxazosin 4mg 4 - 2 twice daily wants me to go to 5 tablets.
Digoxin 125mg X 1daily heart tablet.
Omeprazole 20mg X 1 daily.
I know, as we all will no doubt know from experience, any medication administered will affect us all in different ways... And our bodies will also take time to become used to them. Neither of us having any experience of anything she is taking can guess at the amount of time required for the body to become accustomed to them, but one thing is for sure, the calm, measured, charming and cheerful friend that I know well, has become altered completely. She is so wired she can't sit still, her anxiety is palpable and seems to be growing exponentially, physically she is so wobbly that all in all she is simply not the same person!
Starting with in-depth blood tests for the 'usual suspects':
TSH, T4, T3, Vitamin D, Magnesium, B12, Vitamin C, Ferritin, Ferrous fumerate, . . . Is there anything else that she could possibly benefit from in having tested?
All advice most gratefully accepted.
I am also trying to help find a favourable hypnotherapist for her; to see if they can help her to relax, bring her anxiety levels down and hopefully help her sleep, as she is so sleep deprived that alone will make everything else worse!
I look forward to hearing any contributions, thoughts, experience and advice.
Many thanks,
Poppy the Cat 🐈
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Poppy_the_cat
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She has a lovely friend in you. If she were my friend I might go through all the drugs she is on, their possible interactions and side effects. She must inform her GP of how she is feeling. You provide a very clear account here. I experienced a distressing phase of panic attacks in the 80s, I was eventually diagnosed with Graves Disease ( thyroid) over active thyroid function, leading to Thyrotoxicosis. I became very thin, wired and agitated, hot and shaky with palpitations. I must say that her symptom picture sounds very similar. Does she share any of our diseases? ie PMR/GCA/LVV. I sympathise with the fact that doctors of different specialisms often work in their own silos without seeing the holistic picture and therefore the whole patient. She certainly should have a thorough medication review. Good luck with helping her. My panic attacks subsided once my treatment was corrected.
Thank-you for your valuable insights; sadly coming from your own distressing experience
One of the things I forgot to mention was the fact that she has indeed become painfully thin!
Sadly she has already attempted to inform one GP but I fear that nobody is willing to contradict the sacred words of the Consultant who put her on this huge cocktail of meds...
She is trying to "speak over the phone" to somebody else next Wednesday, but to be honest I don't hold out much hope...
I agree, we must press on with these private blood tests as a first step.
Thank-you so much for your kind words of support and interest in my friend.
After finishing work today, I am going back to see her, as we will try a calm visualisation technique, using a beautiful birthday card image of a tranquil Victorian garden to see if I can help her relax a bit.
I do feel for your friend and for you. It must be so hard for you to look on and see your friend having all these awful problems and symptoms. You have listed all of those clearly and concisely and I feel they should be presented just as they are to both her GP and her consultant. Huge problems can ensue when there is no 'joined up' care and where each hospital department does its own thing.Your friend is very fortunate in having you to advocate for her.
I will endeavour to prepare a typed note for her so that when she has her 'telephone' appointment with this other GP next week...she will at least have a script to follow, because it's so easy to be thrown off track whilst on the phone.
A friend of mine delivers a letter to the GP BEFORE his phone appointments, so that the GP has 'the script' too! It helps both parties to focus on the points.
I too have tried that in the past. However, something that annoys me intensely is that anything I have addressed to my doctor seems to get opened possibly by the receptionist, regardless of whether I write Private on it or not, and it gets put in a general pile so any doctor can access it!!
Awful really.
I will try to suggest it, as she is with a different practice. It's worth a try indeed.
Does her practice have an on-site pharmacist? I would be inclined to get them involved, looking for interactions and potential overdoses. The weight loss and anxiety would suggest a thyroid problem but overactive rather than underactive - and it is a potential adverse effect post parathyroidectomy:
"Can parathyroidectomy cause thyroid problems?
The majority of patients are asymptomatic, although clinically significant thyrotoxicosis can also occur. Candidates for parathyroidectomy should be informed of this potential complication, and thyroid function should be assessed if clinically indicated."
says "Transient hyperthyroidism after parathyroid surgery is not infrequent. The condition seems to be self-limiting, since symptoms invariably subsided without treatment. Manipulation of the thyroid gland is most likely the major contributing factor to postoperative hyperthyroidism. However, it may not be the sole explanation"
I would say it IS clinically indicated - and it is found in one third of post-parathyroidectomy for primary hyperparthyroidism patients - which she was. Hopefully though it will settle - but since you can't know, she needs an endocrinologist to see her.
To be on 3 BP meds AND digoxin seems a bit much - and of course, the more meds, the more potential for interactions.
But what on earth was the one GP up to DOUBLING the doses?
Difficult to say what is the best action - other than you going with her to insist on being seen by a sensible GP to discuss what I have noted as it really does need to be checked at least. I would seriously consider A&E because of her distress but preferably NOT at the hospital where her cardiologist is!!! Calling 111 MIGHT get some sensible advice if they will arrange a phone call but they will probably say to see the GP.
Thank-you so much for your extremely valuable insights.
Unfortunately we both lost our local practice, just before the pandemic and we're all bundled into a practice on the other side of town. Both of us and indeed many friends we have in common have not had a good experience with the doctors in this new practice... My friend got so fed up, she changed practice. There is no pharmacy in her new practice. I was on the point of leaving also, but gave it one last try, seeing a new female doctor who quite frankly was exceptional. Therefore, I remained. However, my friend now finds that this new practice is even less satisfactory and O am urging her, as is her husband to return to where I have still remained, so that she too may see this wonderfully thorough and caring female doctor.
All this just adds to the stress, as even the smallest of things are too much.
We both lost our excellent doctor when he retired shortly before the practice closed, just before covid. He really has been an immeasurable loss us all. It was he who said to me that in his opinion, far too many older folk were on far too many medications that were in fact doing more harm than good!
With doctors who dismiss anything other than TSH for diagnosing anything to do with the thyroid, believing it 'irrelevant' we obviously need to find another way.
I will convey your thoughts and impressions to my friend so that she can take back control. Many, many thanks for your reply.
I shall ask, because she really is exceptional. But it's so difficult to get hold of her, but really most importantly we have to get her back to the practice where this doctor is...
The meds she seems to be taking are for1. high blood pressure
2. Anticoagulant I assume for the AF
3. Arrhythmia
4. Statins
5. PPI I assume to stop the tablets causing stomach problems or does she have stomach problems?
Her problems seem to be
1. Heart problems - AF, high blood pressure, other heart problems and her consultant seems to have given a reasonable selection of drugs for this. I am glad the latest GP reduced the drugs increased by the first GP.
2. Neuropathy - is this causing her pain? I have the same and use one of those machines they advertise on TV.
3. Macular Degeneration - I assume she is being treated separately for this.
4. Pain in side - camera booked to check on this. I assume this is a different department not the cardiology department?
5. Parathyroid - has she been discharged?
6. Panic attacks and anxiety - is this why she is seeing a councillor?
These will all be different departments which I know can be frustrating.
I am not sure how having private blood tests can help unless she gets professional advice on this. I assume she has already had blood tests? Does she keep track of them? She is seeing a councillor is this helping, it seems not? Would adding a hypnotherapist actually make things any better?
It does seem to me that her major problem is the anxiety about all the conditions and drugs she has. She does seem to be treated for all the problems she has. Heart problems do need various drugs, she should list her symptoms as 123-go suggests and show them to the consultant and perhaps suggest that she may be getting bad side effects from the drugs. She could talk to a homeopath who looks at the body holistically.
I am not a professional so these are just my amateur thoughts. Your friend is very lucky having you and your support will be a great help to her. You are fantastic.
Not really but it is a lovely feeling. The downside is it is rather a nuisance having to drag it out and put it away as I have a small house and can’t leave it lying around!
Thank-you so much dear Piglette for taking the time to analyse the long list of meds.
You are correct in your analysis.
However, sometimes I think that one has to approach a similar situation with a 'priority value' as well. By this I mean that her present state of being needs to be approached holistically, taking into consideration all of the issues, and prioritise them with a 'limit'. By this I mean that not too much must be addressed all at the same time; not just because of possible multiplied interactions, but because simply too much medication will surely be too much for the body to deal with... A bit like "0 to 60" in 3 seconds flat!
She instinctively feels she is taking too much. She will try again, unfortunately on the 'phone' this coming week to speak with a different doctor. So we shall keep our fingers crossed.
But in the meantime, thorough blood test results will help her not only with the results, but a 'process of elimination' is also a valid result, besides the fact that some of these doctors don't have a clue about thyroid. One of them denied there was any need for there to be an acidic environment for iron to be better absorbed! Another was not remotely aware there was any connection or relevance to raised cortisol levels due to the effects of menopause...🙄🙄🙄. It astounds me how many doctors are so complacent to think that since they left University there will have been no new discoveries, or research that might change, enhance or better their knowledge!!!!! So many of them are sadly outmoded and outdated!
But anyway, with the terrific help of people such as yourself, I am confident that I can help an older friend who is feeling very desperate and very stressed, to regain some kind of improvement for herself.
I do agree about the holistic approach which is why I suggested a homeopath, the trouble is sometimes you find by seeking advice from anyone you have even more things wrong with you than you thought in the first place. I have had this problem recently when I managed to faint three times in hospital and I was grabbed into the system. I have worked for the pharmaceutical industry for thirty years, although I am none to keen on drugs myself, the ones your friend has been prescribed by the heart surgeon did not seem over the top, but who am I to say. Is she taking any other drugs on top of the ones you mentioned?
It does rather point to something caused by the operation in that case. Has she talked to the surgeon? How long as she been taking heart drugs? Was that more recent than the parathyroid surgery?
The Parathyroid op came first, then the panic attacks started. The Atrial fibrillation has been know about for sometime... But everything is phenomenally worse since the parathyroid op .. yet this rather conceited heart surgeon - if you will forgive me, dismissed thyroid issues outright, saying that since the parathyroidectomy, "the thyroid was back to being perfectly normal" quote! On what basis this statement was issued is unknown, my friend has never even been told what her blood tests were and what exactly the results were! And this is private!! It's back to the Mushrooms really, "kept in the dark and fed on the proverbial". It makes me all very angry. I cannot help but sense that there is an undeniable attitude of acceptance that because of her age, she has to put up with this state of being!! What nonsense!!
So the heart surgeon had been around before the parathyroid op? Had he prescribed the heart drugs before the op? I assume so as she has an anti coagulant on the list. Are you saying everything is private or just the parathyroid op? Sorry to ask all these questions just ignore me if you want. Has she asked for her test results? You often do not get them unless you ask.
The prescription for all the meds from the heart surgeon, came after the parathyroid op, and it was he who her told her, that her "thyroid is now perfectly fine"... without ever showing any blood tests to back up this statement! It has all been private so far. It's all a very big mess, with too much medication, no thought for interaction effects, simplified thinking that the removal of a parathyroid gland will miraculously wave a magic wand, denial that there is any link between thyroid issues and atrial fibrillation!!!! 😳😳😳 And essentially, depriving the patient of factual results because there's an assumption that she can't possibly understand anything anyway, because the doctors know best!!!
It's all a mess and I'm pretty fed up with the way older people in particular are treated with such condescension! Sorry abo the rant.
In fact from what you are saying she had the problems before she started on the heart drugs is that right?? I was wondering if she would be willing for you to join in on her appointment on Wednesday if you are willing that is?? If everything is being done privately I would have thought they would be more careful as they are in danger of being sued personally. You also normally find the older more experienced doctors working privately, but I do agree some could be a bit better than they are. Why does she think she has too much medication?
Just omeprazole alone is a very nasty thing to take with so many potential side effects. I know because my mother takes it and it's really horrible for her, but she persists at a low dose but it's very unpleasant...
I am not sure that Apixaban is particularly renowned for causing stomach bleeding. Perhaps she should ask whoever gave the Omeprazole to her why did she have it?
I would be happy to join her for the telephone appointment, but one of her daughters has already suggested it.
I hate to say it, but for being unwell for over 20 years like so many people on this forum, to our learn and you inform yourself and particularly, you learn how to get the best out of the medical establishment. Her daughter I doubt very much will have the same experience and no doubt will not be much use in helping to get her mother's points across because it's very hard sometimes if you are not used to dealing with doctors, to not be 'cut short' and dismissed...
Hopefully, for giving the doctor before hand the same list of symptoms that my friend will have before her, that she has dictated to me...they can at least be more on the same page...and we keep our fingers crossed.
I sense a certain jealousy already. The elder sister is already suggesting that before seeing a hypnotherapist to help her with sleep "they should run it by the doctor first".... Oh dear... I sense a bit of control going on here... I don't want to tread on any body's toes... So hopefully she will get a positive result, Fingers crossed.
Hello to all, I’m going through or have gone through much. I’m not near trained in medical, I’m a shift electrician that needs to fix things, with info given. I was looking for info and find what I’ve learned is not here.
I would like to know HR, BP.
All area’s stated seam to be near or controlled by the Vagus nerve. It’s near parathyroid, and if parathyroid surgery was done from the side, vagus could have been excited. Vagus nerves are in the face and believe I’ve read about eye problems with it.
My vagus nerve is the reason for my AFib 15 years ago, last spring stress from life closed my throat and hospitalized me three times. Xanax helped, which told me it was stress and anxiety. Researching sent me to the vagus nerve in the sympathetic mode.
This sympathetic mode of the vagus can recycle on to itself only making things worse. More stress, creates more stress. She needs to break the cycle, and get back to the parasympathetic mode of the vagus nerve.
There are many techniques online to relax into parasympathetic . Breathing, moving eyes (researching can make eyes focus small, eyes need to expand in range) have worked for me . Try it, it will make you salivate. When in parasympathetic mode you will salivate.
This vagus nerve goes through your abdomen, talks with you stomach, goes through your heart and modulates it, into your neck and all over your face, including your eyes. Back of your head, through your ears, under the back scull and in to your brain
Massage your neck, move your eyes, do vagal breathing exercises, YOU WILL SALIVATE..
This is the only way out of the cycle of stress causing more stress. Then relax and re-evaluate.
Digoxin has given me problems, exciting the vagus and also the heart. Very small window of use. I question it, as I lay here, three days cold turkey, feeling good. I’d go there first.
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