About 10 years ago I was hyperthyroid with graves disease once treated I've been on levothyroxine since. Dosage has always changed. It used to be 50 then 75 alternatively I always felt comfortable at my TSH between 3 and 4. Since last year the Dr put me on a 100mcg and my my TSH was 1 . I had a blood test last week with a new surgery and it's now 0.2 which is way to low for me.The new Dr is starting me off tomorrow with 75mcg levo but it's a different brand Teva and it's on my records to always take mercury pharma. Is it ok to miss my tablets for a few days until sorted? I missed my 100mcg today. Although my T4 and FT3 weren't tested could I be hyper again? I've lost 3 stone in weight since 2 years ago. I can't sit still. I am always so overwhelmed and tired and when I eat it goes right through me. Any advice would be great.
Thank you
Jane.
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Jane_louise
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Sorry to hear that you're so unwell. Sounds like you need to have a full range of thyroid hormones tested, including T4 and T3. I have Graves' and my TSH has been very low and both my T4 and T3 were high before treatment. I had similar symptoms to you, weight loss, shaking and upset tummy etc. If you are hyper you need to see your Dr asap. Good luck getting it all sorted.
My new surgery don't do the test for T4 and T3. My old surgery never did too. They say the labs won't do it.😔 My new surgery say 0.2 is in their range. I said to the Dr I can't stay at that. I feel the drs don't have a clue.
When you say " with hyperactive and Graves and since treated " - what do you mean ?
Did you have your thyroid surgically removed, or ablated with RAI or did the medication alone give you a state of remission ?
Have you ever found a level of wellness since the diagnosis some 10 years ago.
Graves is an autoimmune disease and as such it's for life. It is in your blood, your DNA.
I read that no two people have the same journey with Graves, everybody's symptoms being different, thereby making treatment confusing and not well understood by the mainstream medical profession.
When Graves attacks the thyroid the symptoms experienced can be diverse, confusing and sometimes, down right frightening.
It is not acceptable to be managed on just a TSH blood test result.
This test was originally designed as a diagnostic tool, and once on any form of thyroid hormone replacement we should be monitored to include both T3 and T4 blood tests, and generally most people feel better when their TSH is around or under 1.
If your surgery will not undertake a full thyroid panel you can get this done privately and would also suggest you include your ferritin, folate, B12 and vitamin D, as if these essential vitamins and minerals are not optimal any thyroid hormone replacement you maybe taking may not work effectively.
Once with these results, post back on here with the ranges, where people more able than me will be able to help and advise you of anything that needs to be adjusted.
Your might like to take a look at the following :-
Elaine Moore has Graves disease and has set up a website offering all Graves patients open access to all current research and treatment options. It is USA medical protocol but there is much information with open forums on which you may find some additional help.
I was treated with carbimazole when I was hyperthyroid which bought me to borderline hypo since then I have been all different doses of levothyroxine for nearly 10 years now.Do I still have graves disease? My eyesight is very blurry too but I thought it was to do with my age I'm 54.
How much is it to have a test done privately please?
Yes, Graves is an autoimmune disease and as such there is no cure.
Symptoms are managed with anti thyroid medications one of which is Carbimazole, and If the meds don't work, and / or remission not reached the next but very last option would be thyroid removal by surgery or RAI ablation.
Since Graves is an autoimmune disease simply removing the target of the attack, the thyroid, isn't really a solution but the Nhs believe that they manage hypothyroidism better than they can manage hyperthyroidism.
I think you need to speak with your doctor and discuss your recent Graves symptoms of weight loss, loose bowel, nervousness and agitation.
Graves is said to be stress and anxiety driven and would hazard a guess that your age might have something to do with your current health issues.
If you are unable to get the relevant tests on the Nhs there are private companies that offer this service, and details can be found on this site.
Once with the full blood tests results post back on here with the ranges and people better able than me will be able to advise you what next steps need to be taken.
I agree with the others, you can't be assessed or treated on TSH alone! You need T4 and T3 testing urgently. If you're not currently being seen by an endocrinologist I'd ask your GP to refer you. Mine told me GPs don't manage Graves' and that it has to be managed by an endocrinologist. If you have symptoms back you need proper blood tests and to be monitored closely by a consultant.
You shouldn't have to pay for the tests you need to establish what treatment you need. You should also tell them about your eye issues in case that's related. I was told by my GP to stop taking thyroxine when I went hyper and was given propranolol straight away to deal with the hyper symptoms. I ended up going private for my first endo appointment as the wait was too long on the NHS, they then referred me to their NHS clinic in 3 weeks' time. I know this is expensive and not everyone can do that. Hope you get some sense from your GP. Good luck.
Thanks all. The Dr has agreed to test my FT3 and T 4 in two weeks. I told him everything I eat it goes right through me. He told me to stop Levothyroxine for 2 weeks then blood test and if my levels are still low I will probably have to see the endo. I'm scared to stop the levo as I have been on it for 11 years. Is it really ok not to take it? Thank you in advance.
I have stopped all levo for a month for the same reasons but under the eye of an endocrinologist. You need the test before you stop or it’s pointless if they haven’t done ft3 and 4 before. I would tell your gp your not happy about doing it and can you have a blood test immediately. they wouldn’t get a true reading if you came off for two weeks. I can’t understand why you should wait two weeks for a blood test anyway it’s ridiculous. You will have to fight your corner on this one as it looks like your gp hasn’t a clue. X
I had a blood test two weeks ago Dee. I've been told I have to stop the tablets for 10 to 14 days then a blood test to see if I can raise my TSH levels. If it's still low I maybe referred to the endo. I don't like stopping them. Before this I missed days and took different dosages. I missed today but may try 75 tomorrow. I'm finding it hard to swallow I don't know whether it's because I'm anxious about stopping the tablets or whether it's side effects. I'm all over the place and I'm not sure what to do. My new Dr said he is going to write to someone for advice. It seems he may not know what he's doing.😟
Bless you. Tsh is a slow one to get moving so two weeks won’t tell them anything. It’s taken 6 weeks for mine to rise from 0.03 to 0.14 and my ft3 and 4 have dropped below range in this time so have been put on 25 levo for now. More bloods next week. Just tell him to refer you as your not happy about him treating you when he isn’t confident on the treatment himself. You really will have to stand firm.
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