I'm posting here again because I am really, really struggling. I have just had the worst week I've had health wise in nearly 2 years.
It would seem that I have been massively overdosing my Efra Thyroid.
I upped my dosage following my discussion my Holistic Doctor at the start of October to 1 x 60mg/1 grain + 1 x 30mg/ 1/2 a grain on waking first thing and 1 x 60mg/1 grain mid afternoon (usually around 3-4pm depending on when I have managed to take my Iron supplement to ensure the 4 hour window). I wouldn't have upped it without his advice and wish I never had.
I've been feeling progressively worse over the last few weeks and it peaked on Wednesday. I have been feeling shaky, extremely anxious, depressed, tearful, exhaustion beyond words, no appetite and having to force myself to eat meals. The worst part has been the insomnia. I am waking at 4-5am every day and I can't get back to sleep.
I am just not functioning. I keep feeling like I am going to pass out and feel very wobbly. My weight is now at 14 stone 7lbs (I'm 5 ft 8ins) and my resting pulse rate is 72. I don't have my blood pressure because I don't have a monitor.
My GP is not being any help and just wants me to take anti-depressants & seek counselling. I have had a small amount of sleeping tablets on prescription from her (Zopiclone), but I can't really take them unless it's weekend because of my need to drive to get my Daughter to School & back (her School is 3 miles from our home.). I don't want to take them because I know they are addictive, but I know how much I need my sleep. I have only taken one so far and still woke up at 5am.
I have reduced my Erfa Thyroid dose from 150mg/2.5 grains to 90mg/1.5 grains as of last Tuesday. This was a result of seeing my GP who had done a blood test which shows I need a reduction in dose.
My results were:
My T3 is 6.2pmol/L
My T4 is <0.02mIU/L
This test was done on 23rd October and was taken mid afternoon. (The test was rescheduled because the first nurse couldn't draw blood. I took my 2nd dose of Erfa after the blood draw and had taken it last at 6am that morning). These were the only things tested. I have no other results.
I know that the Thyroid hormone treatment affects the TSH reading on standard blood tests, but I feel that I have switched from being Hypo to Hyperthyroid and I think I was stupid to increase my dosage. I would never have upped it had I known it would make me feel this horrendous. I thought I was doing the right thing.
Does anyone have any advice as to what I need to do now please. How long will it take me to feel right again? I don't know what the half life of Erfa Thyroid is and how long it take me to feel a reduction of the meds?
I am feeling very despondent about the whole process and it's made me lose trust in taking in Erfa. I've actually considered switching back to Levothyroxine because I've been so unwell (I haven't though and wouldn't do so without your say so)
I really can't carry on like this because I am unable to work on my business or doing the simplest household chores without feeling dizzy and faint. It's having a massive impact on me. I'm wondering if I am not reacting well to the T3 component of the Erfa having never taken it before seeing you.
I am still carrying on with all my supplements (Selenium, DHEA x 1 capsule, Kelp I have just started - only one tablet for now. Rhodiola Complex. I'm also taking Probiotics, Lamberts Iron x 2, NYR Beauty Boost x 2, Vitamin D3, Zinc. I think that's all of them, but I'm struggling to remember them all).
If any of you can offer me any advice I would really very much appreciated. I'm at my wits end and It's affecting all aspects of my life.
Thank you so much in advance.
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franniebabes
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Have you reported back to your Holistic doctor? It needn't be a full consultation - maybe just an email or phone call. He advised the raise in meds, so he needs to know that it didn't work for you.
My T4 is <0.02mIU/L ? Doesn't seem to make sense to me ....you need to put the ranges also for your results!when I became over replaced recently on 2.5 grain I simply stopped my ndt for a few days and then reverted back to the dose I was taking before I had started to become overmedicated. Things soon calm down .
I'd miss out your dose today or even tomorrow too if you feel the need and start on 1 gr. 1 grain is equal to around 100mcg of levo. (I am not medically qualified). You've been taking around 300mcg of hormones which has proven too much.
Also I don't agree with splitting doses as it is an inconvenient method (I know many do so) as you have to find a window in which your stomach is empty as food interferes with the uptake.
You are taking an equivalent dose against levothyroxine of 300mcg of thyroid hormones which has proven a bit too much for you. The T3 in NDT or T3 only gets into our receptor cells quickly but its effect lasts between one to three days. T4 is inactive and has to convert to T3.
When we take NDT, we start on a dose equivalent to levo and increase by 1/4 tablet every two weeks until we feel better and symptoms are relieved. You also take pulse/temp before you begin so you have a starting point and drop back by 1/4 if either go too high. This allows you to have a better quality of life as stomach has to be empty before and after taking thyroid hormones. As we are hypo it takes longer for food to be digested so that's why it is recommended when we awake we take thyrod hormones and wait an hour before eating. The dose should last the whole day or longer. Some prefer bedtime dosing, in that case they should have last eaten about 3 hours before.
I agree with you about multi dosing being a very inconvenient method...I have never used it either, but I know many so called thyroid hormone experts recommend it, especially the STTM moderator who is adamant NDT needs to be multi dosed to imitate how the body would naturally produce thyroid hormone over a 24 h cycle...a nuisance, IMHO, but I know many patients on NDT who take it that way...the STTM also encourages taking NDT sublingually, and I know many believe that is the best way to take it, although I never found it to work better than simply swallowing the pills...
Dr Lowe disagreed with multi-dosing and it does interfere with everyday living. Also, as I'm sure you know that the molecules in hormones are too large to pass through the tongue which I'd think would mean you'd have to take more than you would need with one dose that has had no interference with foods/drinks etc. What a bind - to not be 'free' and forget you have hypo altogether.
Yes, it was a relief to me when I read that the molecules in thyroid hormone cannot pass through the tongue...that's when I decided to take NDT once in the morning, simply swallow it, and not think about it until the next morning
Are you sure those results are FT4 and FT3? Doesn't look quite right. Do you have the ranges, please, because otherwise we cannot interpret them.
If you took your last dose of NDT at 6 am, and then had your test mid-afternoon, you could have a false high for the FT3. It's better to leave 12 hours, to be sure. But, in any case, if those results are what you say they are, and the ranges are more or less what we usually say, I certainly wouldn't say you've massively over-dosed. I don't think you really needed to reduce as much as you have, but really need the ranges to be sure.
Thanks for all your replies. I appreciate your help more than I can express.
Yes I do have Hashimoto's. Yes I'm strictly gluten free. Have been for months. If I've been glutened it's without my knowledge.
I'm only taking Kelp on Doctor's advice. He says I need Iodine and this is the best way, but I was dubious from my own research.
I'm not sure that multi dosing is working for me at all. It is an absolute pain and if I forget to take it at the right time in the afternoon I worry it will make me not sleep.
I've taken a photo of my test results to upload, but can't see how I can add it to this post. Sorry for my ignorance. Would I have to post it again?
I think I should've checked what they were testing for. I didn't realise they'd missed off ferritin, Vit D and B12 like I asked for originally.
Just realised we can edit posts so I've uploaded the blood test results. Sorry they're not great quality. My scanner isn't working and can't get the whole shot from my iPhone.
I don't think that you are massively overdosed. Your Free T3 is within range despite the fact that (if I've understood you correctly) you had taken a dose of NDT in the morning. Your dose may be too high for you, but you aren't in dangerous territory, so please don't panic.
If you feel terrible then don't take any NDT for 2 - 5 days, depending on how you feel, and then re-start on a slightly lower dose.
If you are struggling to tolerate the NDT there are many reasons why this might be the case. The biggest problem is sorting out which reason applies to you and it can be a long-winded and slow process.
1) One thing I've realised is that many people are scared of thyroid medication and they hesitate to experiment, but I found experimenting was essential. You have to get your dose sizes and dose timetable right for you, although changing the total daily dose is not something to experiment with casually. I know some people recommend taking thyroid meds once a day. This is fine for Levo, and if you can do it for T3 or NDT then consider yourself lucky. But many, many people can't do this with NDT or T3. I struggled to tolerate thyroid meds for several years and at my worst I had to split my T3 into 5 tiny unequal-sized doses per day - and even the total dose was too small for my needs. I experiment with numbers of doses and size of doses whenever I start to feel worse, although I only rarely change the total dose.
2) Having low nutrients can make it hard for the body to tolerate and/or benefit from thyroid meds. There are many, many posts about nutrients on this forum. Look for posts by SeasideSusie on the subject. They are very informative :
3) High or low cortisol can make it hard to tolerate thyroid meds. In my own case my issue was high cortisol. I know very little about dealing with low cortisol. Testing cortisol with a blood test is not helpful, instead saliva testing is far more informative. Unfortunately there is a lot of crossover in symptoms for high and low cortisol and it isn't possible to guess which one you have. Read this post for further info on how high cortisol can be dealt with - sadly it isn't easy :
Have you kept a check that your vitamin levels are at recommended levels and not too high? You need at least 6 monthly blood test for vitamin D and make sure in range. Same with ferritin.
Well point out that at least you're not an alcoholic or abusing illegal drugs all of whom the NHS treats without batting an eyelid.
Also point out that you might not have needed to take NDT if the levvothyroxine the NHS supplied had been of good quality in the last 10 years. Since the quality controls for human medicines failed for levothyroxine they should have every sympathy for your choice to source your own supply of medication.
If they don't know what you're talking about, point them to the 2013 MHRA report on Levothyroxine, Quality and Clinical Considerations which they can view in the MHRA archives which describes how inadequate the controls on levvothyroxine were prior to 2013. It took them another 2 years to clear all the old formulations of levothyroxine off the shelves. There is no guarantee they have got it completetly right yet.
Hello, I'm sorry you are feeling awful and struggling to cope.
I don't take any thyroid medication so cannot help on that front but if you think you have overdosed a bit and have gone a bit hyper, could a low dose of beta blocker be a short term fix? That is what I was given when I was genuinely hyper and had anxiety, fast pulse etc. and it did really help. (Perhaps other posters can comment on this, I am not an expert)
On that subject, what is your resting pulse rate at the moment? I do feel that my pulse is a good indicator of where my bloods actually are. Up in the 90s sitting still when hyper, down in the 60s when I was hypo, and mid 70s when at my normal.
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