A few weeks ago my thyroxine dose was reduced from 100 to 75mg. I had no warning, just a decision my GP made. I've been on various doses over the years, but 100 was felt to be the correct one for me.
The past few days, I've been feeling like I'm shaky and unsteady. I've been giddy when bending over or turning over in bed, and today I feel like my whole body is buzzing with a slight tremor feeling throughout. Its subtle; I don't have a visible tremble but I feel a bit spaced out and just not myself.
Could this be the effects of the reduced dose?
I am also a long term anxiety sufferer, so I appreciate it could all be associated with that, but I just wondered if my symptoms could possibly be due to under medicating.
Thanks in advance for any advice!
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Wursty
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I am also a long term anxiety sufferer, so I appreciate it could all be associated with that
Anxiety is a symptom, not a disease. And it is very often a hypo symptom. Tell your doctor - firmly but politely - that he has no business changing your dose without your consent, and you want it put back up again. The arrogance of these doctors, thinking they always know best, just beggars belief!
Increased anxiety has been the worst symptom of having a thyroid condition for me and it is always worse if thyroid medication or key vitamins (ferritin, folate, vitamins B12 and D) are not optimal. Please can you share any thyroid/ key vitamin blood test results with us. It is highly likely you are now undermedicated.
My GP initially diagnosed me with ‘ health anxiety’, suggested I saw a psychotherapist & offered me anti depressants. Joining this forum helped me realise that my symptoms were related to being under medicated and I followed forum advice to improve this.
Once again a lazy and uneducated GP treating numbers on a computer screen rather than the individual patients needs.I would absolutely insist on going back on original dose straight away.My GP once dropped my dose from 150 down to 100 and almost wrecked me.Dont take no for an answer.
Remind your surgery that GPs have a legal duty of care. This is supposed to include longitudinal care and consultation during which knowledge, trust, loyalty, and regard are the key elements. As this was not discussed with you, they failed in their duty.
I know many of us have more knowledge of thyroid problems, and having been faced with a bare faced lie by my GP, I no longer trust him. My father was a doctor, some patients he did not like and some he did, but he held them all in regard and did his best for them. We now seem to be just a nuisance.
I eventually managed to speak with my GP on the phone on 10th January. She explained that my thyroxine dose had been lowered fro..100 to 75 as I will be 65 in March, and taking higher doses can increase the risk of heart irregularities and osteoporosis in my age group, and you can't take calcium when you are on levothyroxine.
I explained that I was not feeling as well on the lower dose, and she said I was to keep taking 100/75 on alternate days for three months and then get another blood test.
The symptoms I was experiencing shortly after reducing my dose included extremely dry and itchy skin. My GP gave me some skin wash and emollient to help this. I also began to feel giddy, especially when lying down, bending down or turning over in bed. This has continued to get worse, so that it sometimes happens even when I'm sitting still. I remember the horrible giddyness I used to experience prior to being being diagnosed with hypothyroidism.
I have a long standing health anxiety, but my generalised anxiety has become much worse since being on my lowered dose, probably because I am constantly aware of not feeling as well as before.
I have had a few mouth ulcers. I feel shivery and shaky "vulnerable" for no reason. So much so that I have tested myself for covid a few times, because I felt like I could be coming down with something. I also get very tired, but am having terrible problems getting off to sleep. I frequently lie awake until 2 or 3am.
I'm keeping a note of any symptoms so that I can tell my GP when I get my blood test at the end of March. She was sympathetic regarding the way I was feeling, but kept telling me that her decision was to protect my heart and bones.
I don't know if anyone else can identify with this?
I would suggest getting a new GP! This one is going to keep you unwell... you know your body and anxiety is all part of being hypo and under replaced, the risk to your heart and bones is greater if under replaced or hugely over replaced and to say at 65 your needs change is totally ridiculous!!
I think you should report her for this kind of nonsense!
Thanks for getting back to me Eeyore 100. I totally understand your point, but unfortunately our surgery is understaffed and in a very bad way. My husband was misdiagnosed with IBS and piles by a different doctor from our practice in 2022 following four separate telephone consultations plus one in person consultation when the GP looked at him but didn't do a physical examination. It turned out to be bowel cancer, and he had an emergency operation after a complete bowel obstruction which was almost at the point of rupturing, which would have been fatal. He now has a permanent stoma and underwent chemotherapy following his operation, but thankfully he is doing well. We made an official complaint to our GP surgery and met with the doctor in question and the practice manager. The doctor admitted he had made mistakes and apologised. The practice manager said all surgeries across Scotland were in a similar position following covid, with mai ly telephone consultations continuing, because they had very few doctors and those they have got were burnt out. Nowadays, we can wait weeks for even a telephone consultation, and in person consultations are not offered unless you have spoken to a GP first.
My GP apologised to me for the mix up with my thyroxine prescription change. She was working late at home and was tired. She should have pressed a button and didn't, which meant that she cancelled my prescription entirely rather than reduce it. When I discovered my medication was missing the thyroxine, I contacted the practice and that's when I found out I had been changed from 100 to 75. No other information was given. When I asked to speak to the GP I was told it would be three weeks before I could get a telephone consultation. When I eventually spoke to my GP she confirmed that all the doctors were working overtime at home, and beyond full capacity. She said she is the thyroid specialist in the practice, and also that her husband is hypothyroid, so she knows how it affects patients. She knows I'm not getting on well on the reduced dose but asked me to persevere with the alternate 100/75 and get a blood test after three months, and she would discuss it with me again when they had the results. I did say I had been on this forum, and she said it was an excellent website, and that she had herself offered advice to patients on here. When I said that someone had replied to my post to say that it was Paper v. Patient when it came to T3 and T4 readings, she disagreed strongly and said that was not true, and completely unfair to suggest that. I have to admit, I feel somewhat disillusioned and deflated by their reluctance to take me seriously. 🥺
Cripes! 😕 I'm pleased it ended relatively well for your husband, my x husband had the same treatment but only lasted a month after the op... inquest to follow (instigated by the hospital) 🫤
It is a country wide issue and an inadequate system, all the more reason to self advocate and be ready to correct their errors which we have to live with... What else about your life style has altered that makes her think a sudden drop in dose is necessary just because you are a little older?
Has she ever tested your fT3 & 4? If she is familiar with this site she would know we insist on proper test results before attempting to help with dose levels...
you can't take calcium when you are on levothyroxine.
I am very suspicious about the treatment of osteoporosis and osteopenia. I'm probably at high risk of getting osteoporosis eventually, if it is genetic. My mother's bones fell apart as she aged. Her hips weren't strong enough to take hip replacements. She also ended up with multiple spinal fractures which doctors don't treat or attempt to repair in the elderly, and her back basically collapsed. I would guess that she lost about six inches in height in the last 25 years of her life. Another problem she had was a drug she was prescribed (bisphosphonates, I think) for her bones caused necrosis of the jaw and she lost all her teeth.
My mother was very compliant with doctors. She took whatever pills and potions she was told to by doctors, religiously.
Have you ever had your calcium level tested? If your level is already high in range or over the range nobody should be taking more, in my untrained, non-doctor opinion.
Lots of people get prescribed calcium (often calcium carbonate, I think, i.e. they are prescribed chalk, often combined with vitamin D).
I don't know why doctors think bones are strengthened by chalk.
Another issue I have with bone treatment is why female patients' bone density is compared to that of 30-year-old women. In nature the bones naturally get more bendy as people age. But modern treatments for bone diseases make the bones more brittle and more likely to break in a fall.
...
Another issue I have is with the condition called osteopenia. It was invented in the 1990s.
Suggest you get FULL thyroid and vitamin testing 8 weeks after reducing dose Levo yourself privately
Which brand of levothyroxine is 100mcg
Which brand is 75mcg
Many people find different brands of levothyroxine are not interchangeable
So if you have different brands this could be causing symptoms
What vitamin supplements are you taking
When were vitamin levels last tested
ALWAYS test all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Testing options and includes money off codes for private testing
She's spouting complete nonsense. She has no idea what she's doing and she's no thyroid expert!
If I were you I would write to the practice manager, explaining what has happened without your consent and the reason you have been given for it. Explain that you do not agree with this idea and that you can't go forward feeling so unwell. You want your dose of 100mcg reinstating immediately and that you are happy for them to put it on your records that you were advised differently but accept responsibility for keeping on the old dose. Then insist. Don't wait 3 months! This was a truly bonkers idea.
I will turn 61 this year. If any GP tries to meddle with whatever I'm doing with my thyroid when I turn 65 I will have none of it. I don't get a pension until I'm 67 and then it's going to be a pittance. I have to keep working. I don't feel any different to when I was 40 except for the hypothyroidism hell. What does she think she's doing, assigning you to the scrap heap at 65!
Your heart and bones will suffer if you have to live in a hypo state. Not the other way around.
Print it off and send it to her. It shows that you have to be way overdosed for any damage to the heart and bones.
Other papers show underdosing is bad for the heart and brain, both which take a lot of T3 to keep working. Include this in the letter, saying you are not willing to risk your heart or your brain to fit with her criteria.
I agree with FancyPants54 , dont wait, you will get more and more ill. It is not your fault they are overwhelmed and tired, so dont take any blame or feel bad for demanding to feel well. I know from experience it does not take much to go downhill with a decrease in drugs, but takes ages to climb back up to where you were.
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