I had RAI 3 weeks ago, almost 4 weeks now, and I`m getting hypo symptoms. I had a blood test last week but this was for TSH and WBC( white blood count) and my TSH was 3.62 (0.35-3.50). So yes I was borderline hypo then. Only this week my symptoms of hypo are even more so. I phoned my doctor this morning and he sent me for another blood test and has given me a prescription for 25 mg Thyroxine- to start tomorrow. Could this be it? Could the RAI have worked this quickly and I`m now hypothyroid?
Thanks in advance- other people`s experiences very welcome. This is all so confusing.
JLiz
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Joyliz
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JLiz, yes RAI can work that quickly. Take your Levothyroxine with a full glass of water on an empty stomach one hour before or two hours after food and drink, two hours away from other medication and supplements and four hours away from vitamin D3, calcium, iron and oestrogen.
You should have a follow up thyroid test in 4 weeks because 25mcg isn't likely to be enough and you'll need dose increases, usually 25mcg every 6/8 weeks, until your TSH is just above or just below 1.0. Have the blood test early in the morning when TSH is highest and don't take your Levothyroxine until after the blood test or you'll get a false low reading as the Levothyroxine peaks in your blood.
Ask your GP to test ferritin, vitamin D, B12 and folate as you may have been using vits and minerals faster than you can replace them nutritionally when you were hyperthyroid. Deficient/low levels can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges (the figures in brackets after your results) in a new question and members will advise whether supplementation is required.
I always take my levo first thing in the morning before my blood test and last time it was stable the time before I didn't take it till after and my reading was low and had to be increased yet I felt fine I have been thyroid for two years and I have just started tofeel normal I think you know what I mean im on 75 grms Never had any vitamin tests to see if I need any can anyone recommend any,,,,
Peppy, The advise is for people who recently started Levothyroxine or remain symptomatic on their current dose. Levothyroxine peaks in the blood for 6-9 hours after ingestion and a false low TSH can prevent people from getting a dose increase they need.
If you feel fine you don't have to increase your dose but you may begin to feel symptomatic if your TSH has risen and you don't take it.
Ask your GP to test ferritin, vitamin D, B12 and folate as hypothyroid patients are often deficient/low and these deficiencies can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms. Post your results with the lab ref ranges (the figures in brackets after your results) in a new question and members will advise whether supplementation is required.
when you say feeling hypo what do you mean as I don't understand and also why are people taking other medication I have only ever been given thyroxine///
Peppy, I mean experiencing or suffering hypothyroid symptoms. Levothyroxine is the standard UK treatment for hypothyroidism and Carbimazole is the treatment for hyperthyroidism.
There are alternative treatments like Liothyronine (T3) which is sometimes prescribed for those who don't tolerate Levothyroxine and there are various brands of natural dessicated pig thyroid which most people have to buy privately as it is almost never prescribed on the NHS.
Thank you Clutter, I`ll follow your suggestions through.
I stopped Carbimazole 5mg - 4 days ago at the thyroid nurses suggestion and thought perhaps stopping it may level things out. But as I said I`ve been having increasing hypo symptoms and with last weeks blood test showing slight hypo the doctor was happy to prescribe 25mg Levothyroxine.
I had a horrendous experience with afib and a heart rate 166 bpm at my diagnosis of Graves and welcomed the eventual RAI and I`m a bit concerned about becoming hyper again. Is this likely ?
I had hyper symptoms two weeks post RAI which my thyroid nurse assured me was the dying gland `dumping` the hormones and said from a doctoring point of view this was good as it showed the treatment is working/has worked.
Thank you again for your help- I`ll be sure to get back with my next tests.
JLiz, the thyroid nurse is right. Some people have horrible hyper reactions as the dying thyroid dumps hormone and have to continue Carbimazole for months. I think it's unlikely you'll become hyper but you'll have to see what stopping Carb does.
It may have been the Carb which caused your hypo symptoms and TSH to rise. Your next blood test should show whether your TSH is rising (underactive) or whether stopping Carb and 25mcg is enough for now. It's unlikely to be your final dose long term.
JLiz, the thyroid nurse is right. Some people have horrible hyper reactions as the dying thyroid dumps hormone and have to continue Carbimazole for months. I think it's unlikely you'll become hyper but you'll have to see what stopping Carb does.
It may have been the Carb which caused your hypo symptoms and TSH to rise. Your next blood test should show whether your TSH is rising (underactive) or whether stopping Carb and 25mcg is enough for now. It's unlikely to be your final dose long term.
My bloods that I had taken before I began levothyroxine 25 mg- are TSH 4.48 (0.35-3.50) and the T4 12 (8-21).
I`d stopped carbimazole a few days before this test- so it looks like my levels were /are going hypo?
I realize that I`m not very hypo but my body just doesn`t like this, I feel dizzy, tired and depressed. I don`t know how people who are very hypo manage, I feel for them!
How long does it usually take to feel slightly normal again, I think I`m worrying myself as I was over medicated on carbimazole all summer and I dread repeating that again! After RAI for a few days I felt as though I wanted to do things again versus making myself do everyday things. I expect that was when my levels went hyper post RAI.
My next blood test is in 3 weeks when I`ll ask for the B12 etc tests too. Is there anything else I can do to help myself in the meantime please? I take( otc) vit D, selenium and B12 but at teatime since I began the levo.
Thanks in advance- anyone else`s experiences to getting well from this horrible disease is very welcome.
Joyliz, TSH 4.48 is quite hypo and after being hyper for a long time will be an unpleasant shock to your system.
You should feel improvement as your FT3 starts rising and your TSH drops. Your doctor is right to have started you on a low dose of Levothyroxine as you have only just stopped Carbimazole but you'll probably need a dose increased to bring your TSH down to around 1.0 which is comfortable for most people.
The only thing you can do in the meantime is try to ensure you get 10 hours sleep and rest or nap during the day if you feel the need and can do it.
Thank you Clutter- this site and everyone on it are an amazing support. Knowing others have gone through it and come out the other side certainly helps.
Joy, my sister had RAI for Graves 3 years ago and is well on 100mcg Levothyroxine. She had some vitamin deficiencies earlier in the year which are being corrected but also started running in Feb and has done a couple of 10K. You'll get there.
JoyLiz, it's hard to say. It could be the hypothyroidism or it may be the thyroxine. Hypothyroid patients usually have low stomach acid which causes digestive problems. Try raising stomach acid by putting a few teaspoons of raw apple cider vinger in fruit juice or sweetened honey water before meals.
Thanks so much again Clutter. As I felt so poorly today with nausea and feeling faint I went to the GP. As I had RAI only five weeks ago and started levo one week ago, he said this is all to be expected as my levels are all over the place still. He checked my pulse 80 bpm and BP a little high and told me to be kinder to myself as I have to wait it out and let the RAI take it`s course. I showed him the list I`d made of the other tests you suggested folate etc., and he showed me on his screen that all my blood tests have come back ok. The only two that were showing in red were my TSH and T4 ( but I knew they were out of range.) Anyway there was no sign of a test for B12 so I asked for and got a blood form to test it.
Hi Clutter...thank you....thank you....thank you...
I
had really bad nausea again today sent my dear hubby to the health food shop, he bought some cider vinegar and honey and hey presto! All nausea has gone, I could eat a horse!! Not that I`m going to I`m feeling tons better, you accomplished what my GP, thyroid nurse and pharmacist did not.
Hi again Clutter, I meant to say when I posted before that it was reassuring to hear your sister got on well after RAI--wow fancy running 10k after all she`d been through
I had more nausea yesterday so purposefully missed out my levo this morning to test if it was that- and it wasn`t because the nausea kicked in without the med.
So I`m thinking I`m hypo and haven`t given the drugs a chance to work?
I was wondering how long the levo usually takes to work? I have all sorts of new aches and pains, very tired and incapable of doing anything after tea-time.....and ready for bed by 8pm at the latest.
I`m almost 6 weeks post RAI and have my blood test next week, so I`ll know more then.
JoyLiz, it takes 7/10 days for Levothyroxine to kick in but a starting dose may not do much. You should feel improvement as your dose is increased but it will take a few weeks/months to be on an optimal dose when your remaining symptoms should resolve.
Hypothyroid patients really need 10 hours sleep a night so do try to get enough rest and sleep.
Hello Joyliz, I too had a horrible experience with A fib with my hyper diagnosis. I am suppose to have RAI as soon as I can (this is my 3rd hyper episode) and my fear is if I go hyper and into A fib again. Dr said she would give me methimizole (US) right after to try to prevent it from happening-very scared though. Did you go on medicine before the RAI to get your numbers better? How long did you wait before having the RAI?
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