My mum was on 75mg of levothyroxine for the past year...she was previously on 100mg for many years, until the docs said she was having slightly too much, so lowered it to 75. In the past 3 months, she's been altering it herself, as she's felt at times that maybe she's having too much, or too little. So alternating between 50 and 100. She had a blood test a couple weeks back, and they're now saying she's not having enough, so back up to 100. Would the blood test have been accurate, as she's been changing the dose? Also she's suffering from anxiety, which the docs think could be due to her not being on the correct dose. They think in 6 weeks on 100mg, she'll find the anxiety will lessen.Has anyone any thoughts on what I've said...could the anxiety be from not enough thyroxine?
Would the blood test be accurate?
Looking forward to any insights
Thankyou
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Yes. I suffered for years with anxiety and panic attacks because I was undermedicated. When the body is low on thyroid hormones the adrenals kick in to make up for the shortfall. Hence the anxiety even though at that moment the person is enjoying what they are doing. It is awful.
We need to be on a stable, unchanging dose for 6-8 weeks before testing, this allows time for levels to settle and gives the most accurate results, but remember that thyroid tests should be done as follows:
* No later than 9am
* Nothing to eat or drink except water before test
* Last dose of Levo 24 hours before test
* No biotin, B Complex or any supplement containing biotin for 3-7 days before the test.
The nurse practioner she saw, said it was an accurate test. But if you've been a week or so on 50, then a couple weeks on 75, back up to 100 for a couple days, then back down to 75...I don't think it would give an accurate picture. She feels more anxious on the 100mg. It's been a week on that dose, maybe it's not long enough to make a difference to her anxiety levels yet. I don't know how many weeks it takes to level things out...the whole 6 weeks?? Or would you gradually improve in that time. It's hard to know what is best
The nurse practioner she saw, said it was an accurate test.
Based on what?
But if you've been a week or so on 50, then a couple weeks on 75, back up to 100 for a couple days, then back down to 75...I don't think it would give an accurate picture.
I don't know how many weeks it takes to level things out...the whole 6 weeks??
We need to be on a stable, unchanging dose for at least 6 weeks for our hormone levels to respond to the new dose and settle. I never test earlier than 8 weeks and I have noticed things still settling down 10 weeks after a dose change.
Never ever reduce dose levothyroxine based on just TSH
She needs vitamin D, folate, ferritin and B12 levels tested too, especially after any dose reduction
On levothyroxine we must have GOOD vitamin levels
Low vitamin levels are more common as we get older and especially when on levothyroxine
What vitamin supplements does she take
ALWAYS test thyroid levels early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
Does she always get same brand levothyroxine at each prescription
Test 6-8 weeks after being on constant unchanging brand and dose of levothyroxine
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
She's been on the 100mg for 3 or 4 days and feels her anxiety has increased. She doesn't really know what she should be doing. She was on folic acid, as she was on methotrexate for arthritis...but came off that for a different reason. So no folic acid anymore. Maybe she should restart that?
From what you have shared so far, there are multiple things that are apparent and give me pause for concern, all of which have been mentioned by the admins and other members. To summarise succinctly:
- Anxiety, Panic Attacks and other mental health distress are common symptoms of under treatment (and even possibly over treatment as we are all so different). That being said, it is of course still possible the anxiety symptoms are stemming from some other ailment which a GP should investigate further. Sadly, many won’t, so it would be up to the patient to educate and advocate for themselves and I am sure many of us here would help in that process.
- There has been an awful lot of yo-yoing around of the dose changes in quick succession. It is likely this will destabilise the body and mind as it is critical to be remain stable on the same dose for a mim 6 weeks, with some preferring up to 8, and longer. I can share that even in my own relatively new experience, during the period of 6 weeks I expect and do experience my symptoms to change, some even stabilising.
- The optimum dose is a fine tune balancing act. Increments of 25mg up or down from the original dose is between 25%-33% depending on if it’s an increase or decrease. It may be that more fine tuning of smaller increments of 12.5mg either up or down may be more beneficial in achieving the optimum dose.
I hope putting this in one succinct post for you helps.
Back to one of the (many) banes of thyroid treatment.
Heavy-handed adjustments. Using a 🪣 rather than a 🥄!
Especially if the dose had seemed right for months or years. it is far more likely that a small increment or decrement is needed than massive changes.
If someone if a bit over-dosed, or a bit under-dosed, then adjust the dose - a bit.
100 to 75 is a 25% reduction.
75 to 50 is another 33% reduction.
50 to 75 is a 50% increase.
75 to 100 is another 33% increase.
That sort of adjustment might be OK when we take a paracetamol - does one work? If not, take two. But levothyroxine is dependent on the exact dose taken.
Considering that being just a few micrograms over or under can make us feel different, I favour the smallest practical dose adjustments when needed.
For example, 100 to 88. (Can be achieved by splitting tablets or alternate day dosing.)
If, after six to eight weeks, that still seems slightly over then drop to 75.
That is adjust by 12 (or 12.5 to be pedantic). And, if you can achieve 88 a day, you can probably achieve about 94 if needed!
Also, many of us find different formulations of levothyroxine affect us differently. Maybe some deliver slightly more or less to us as individuals? Maybe the other ingredients, the excipients, have effects on us? Once a satisfactory formulation has been identified, stick to it as far as possible. (We even see evidence that, say, two 50 tablets can feel different to one 100 tablet of the same formulation.)
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
whenever i change dose . even by a small amount such as 12.5mcg ( 25mcg is often a bigger adjustment that is needed)...... the symptoms over the first 4/5 weeks can be expected to keep changing.. and are not a true representation of how that dose will feel once it has had time to settle in.
So i would suggest she stays on 100mcg for 6 wks and 'wait and see' what happens to symptoms , then do bloods, and then adjust very carefully from there if needed. It may be she is actually ok on 100mcg and notices things start to improve by about 4/5/6 wks ,,and may continue to improve over a longer time scale , or it maybe that she needs a very slight reduction to 87.5mcg .But you can't tell which in the first few weeks
A TSH test after changing doses up and down in the 6 weeks leading up to test will not be a giving a very clear picture. and neither will the fT4 test (T4 has a long half life of 7 days, so it takes a few weeks for that level to properly settle on a new dose, and TSH can take several weeks to adjust and settle in response to altered T4 / T3 levels )
if she previously felt well on 100mcg, then it may have been reduced soley on the basis of a slightly below range TSH test result .. this is not always necessary ( but GP's are pushed into it by guidelines) ..... get hold of the TSH / fT4 results that led to the dose reduction, and we can help you understand it there was good reason to reduce her dose, or not .
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