I'm new to this forum and reading your posts has made me feel as if I am not being a hypocondriate!!!
I had my Thyroid removed over 2 years ago, it was not the smoothest of operations, apparently I nearly died & had to have a second operation within 30 mins of leaving the first operation when they couldn't stop the bleeding. Now I'm not sure if this has had any impact on issues since but its not been plain sailing since. I have suffered with severe depression, anxiety, lethergy and various other symptoms that was put down to 'work related stress' which resulted in me giving up work. Since then I have found my thyroid levels have not been stable and no one can tell me why they fluctuated, apparently its 'one of those things'. It has taken over a year to get my thyroid levels stable - I have to alternate between 125mg & 150mg of Levothyroxine every other day as 125mg was too low & 150mg was too high. On my last test which was a month ago I was told it was border line but 'within tolerance levels' and if I was a member of my doctors family he would certainly be happy with those results . Despite this I seem to have developed sensitivity to change in temperature, just a slight drop in temperature makes me freezing and difficult to warm up again. I am still getting palpitations, continually feel lethargic, I have difficulty getting my words out on occasions forgetting names of those in my family , I have a tingling & numbness in my hands & feet and I have certainly lost my labido and find it very difficult to get motivated. My doctor says its not as a result of my thyroid as my levels are OK. I really don't know what my results are as they are never shared with me & I never think to ask for them. My last test did include a cholesterol test as I have developed fatty white spots under my eyes and a Vitamin B12 test, they to came back as 'OK'. I have been referred to a neurologist for the numbness in my hands and feet, the rest I am being told could be me hitting the menopause. As a result I have been looking on the net for answers. I have started to take multivitamins and glucosomine to help with the stiffness of my joints.
Can I ask, is this the normal pattern of those who have had their thyroid removed?? I have totally given up with my doctor as he makes me feel as if its all in my mind and my husband thinks a lot of it is in my mind as well............. these are real issues for me, what can I do to approach these issues better??
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meganator
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Can you get online access (via EMIS) to your test results?
A tiny measure to try and keep you temperature more stable: take your pills with warm water.
Your parathyroid glands may have been damaged during the surgery, leading to low calcium and the feelings in hands and feet. It doesn't seem to be a problem to get a calcium test, but it may be a struggle to a get a parathyroid hormone test.
Disclaimer: I'm not a medical professional, and probably couldn't live with myself if I were!
I live in Wales, we don't yet have EMIS access to our records I can't even book an appointment on line. I will be booking an appointment today to discuss this all with my doctor. Thank You for taking time out to reply to my post
Hi, I've had my thyroid removed and experienced everything you have whilst on levothyroxine. Someone on her advised to get T3 medicated added to my levothyroxine and it was the best thing ever. Not everyone on Levo copes very well on it (I know I didn't) and think it's affects people who have no thyroid more. I am now on t3 only and I'm a completely different person - I'm not down anymore, I can remember things, I'm motivated to go out the house, I'm have no aches and pains and I can tolerate heat/cold better (although that's not good when my mess are wearing off)
Def see if you can get T3 added to your medication, many endo's won't so you might need to find a good one. Anything is worth a try ..... Good luck x
I am sorry you are so unwell and are without a thyroid gland. 'SmallBlueThing' made a good suggestion about the possibility of your parathyroid gland being damaged. Check that out as calcium is very important.
I cannot understand why people without a thyroid gland aren't automatically given T3/T4. T3 is the active hormone we cannot live without, being the active hormone required in all of our receptor cells. T4 is an inactive hormone and should convert but doesn't always sufficiently.
I bet your doctor is one who adjusts up/down/up/down according to the TSH. It's a useless way to treat patients.
You have clinical symptoms of hypothyroidism. Your quote 'freezing and difficult to warm up again. I am still getting palpitations, continually feel lethargic, I have difficulty getting my words out on occasions forgetting names of those in my family , I have a tingling & numbness in my hands & feet and I have certainly lost my labido and find it very difficult to get motivated. ' indicates that your GP knows nothing about how to treat sick people with hypothyroidism - except look at the TSH result and adjusts doses accordingly.
We have to read and learn if we want to recover our health, unfortunately, it is a very sad state of affairs. The doctor is only doing what he's been told and nowadays they are ignorant of our clinical symptoms which should be eradicated when on an optimum of thyroid hormones for us individually.
Make a new appointment. The earliest possible and don't eat before it. You can drink water. Leave about 24 hours between your dose of levo and the test and take it afterwards. This allows the tSH to be at its highest as that's all they take notice of.
Ask for a Free T4 and a Free T3 blood test - both are important but rarely done. They are only following the stupid guidelines instead of their own initiative. If he or the lab wont do them get a private one from a recommended lab which Thyroiduk have on their site. Your doctor should also test your B12, Vit D, iron, ferritin and folate as we are usually deficient.
The aim is a TSH of 1 or lower and some of us need it suppressed.
Most of us on this forum are waifs and strays from the dismal way we've been treated or not recovering. being thought of as hypochondriacs, doctors ignorant of clinical symptoms. We expect them to know - not for us to be trawling the net for help but thank God there is the internet otherwise I don't know where I'd be.
Ask GP to refer you to a Parathyroid Specialist so you can clear that up.
Always get a print-out from now on of your blood test results with the ranges for your own records and you can post if you have a query.
"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"
Ask your GP receptionist or practice manager for a copy of all your recent thyroid and other bloodtests with the ranges (figures in brackets after results). Post them in a new question for advice as you may not be optimally medicated despite your GP being so thrilled with your results.
Thyroidless patients often don't convert T4 to T3 efficiently and if FT3 is low you will need the addition of Liothyronine (T3) to Levothyroxine in order to deliver good levels of FT3 in order to feel well.
If tingling and numbness occurred immediately after your thyroidectomy your parathyroid glands may have been lost or damaged and your GP should check your parathyroid hormone, vitamin D and calcium levels. If tingling and numbness is more recent it is more likely due to low or deficient B12 which your GP can also test.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Hi glad you found us,I had most of my thyroide removed over 14yrs ago, remember that even though we put hormones into our bodies they are not the same as the natural ones. We think that we should be as we were but the truth is we can't be, don't beat yourself up. As we get older our hormones change and get unbalanced naturally, I am now 51 and get all what you have described, try not to over do it and just take one day at a time.
My life has changed so much in the last 6 months like getting remarried and becoming a grandma but I have come to the conclusion take the meds build yourself up and eat a very healthy diet of fruit and veg, it really works.
But remember you are not on your own, 1 day at a time, and give yourself me time be selfish for once in your life.
Hope this helps but don't worry we are all different as our bodies all work and need different levels.
Meganator, stop the multi-vits. They are a waste of time and money. They do not contain enough of anything to treat a true deficiency, and do contain things you Don't need.
What is essential to do is get your vit D, vit B12, folate, ferritin tested - and ask for the results because your doctor will just have no idea what they mean! - and supplement individual deficiencies to optimal. There are lots of people on here that can help you do that, and advise on the next steps to take. But ditch the multi-vits, they are not going to help. OK?
Glucosomine is OK, but not sure how much it really helps. Is it just plain glucosomine on its own?
It was desperate measure that made me take the multi vitamins, I have been grasping at anything that would make me feel better. I will get more focused now. Thank You for replying to my post, I really appreciate it
I totally understand the desperation. We'll try anything, I know. That's why forums like this are so important to guide us in the right direction.
We won't get any help from our doctors on nutrition because they know nothing about it. All one doctor could tell me on that subject was to stop eating butter! lol Which, of course, was exactly the wrong thing to say!
But if you have any questions, Don't hesitate to ask them here. There will always be someone here to answer you.
The good news is that you can almost certainly get better than you are at the moment. The bad news is that you are going to have to take control of your own treatment and get educated so that you know more than your doctor does. You may even have to change doctors and get tests done privately, and may (horrors!) end up supplementing the thyroid medication your doctor gives you with some you have bought online, however it will be worth it because you will get your life back.
Definitely ask for your actual B12 levels, doctors often say they are OK when they're not. If they are low it has an effect on the way your thyroid medications work. It can also cause many symptoms that are similar to underactive thyroid.
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I can't even book an appointment on line. I will be booking an appointment today to discuss this all with my doctor. Thank You for taking time out to reply to my post
Thank You for taking time out to reply
How would I know if my levothyroxine dose is correct, my feet are so terribly cold as are my hands.
Burning feet and aching legs
Tingling feet
Rubbish hands and feet.
