Aa
what can this be?
I had a sub total thyroidectomy 22 years ago after being diagnosed with an over active thyroid and graves disease when I was 17. After the operation I was much better but have to take thyroxine and have my blood checked 3 times a year. Im now on 125mcg per day but this changes depending on my levels. The only problems Ive had prior to this last 18 months have been terrible aches all over my body(even the tops of my feet!) about 4 or 5 times a year. My dr puts this down to my thyoid and Ive had to basically get on with life.
Since Jan 2009 Ive felt absolutely dreadful with stomach problems, the worse of which is nausea. Ive had loads of tests and these have shown up gastritis and pernicious anemia both of which I take medication for. Nothing seems to help and Ive had to stop working and hardly go out of the house these days cos I feel so ill. Ive lost my appetite and obviously Ive lost weight. There doesnt seem to be any definitive answer from the drs as to why I am like this and why I can have several wks when I feel a lot better only to be hit with another bout of the same symptoms which can go on for months at a time. These include severe nausea, abdominal pains, dizziness, chest pains, headaches, general fatigue, insomnia and low grade fever. Any advice on my next steps, I dont feel like I can go on like this indefinitely with no sign of hope in the near future.
Thanks
Since Jan 2009 Ive felt absolutely dreadful with stomach problems, the worse of which is nausea. Ive had loads of tests and these have shown up gastritis and pernicious anemia both of which I take medication for. Nothing seems to help and Ive had to stop working and hardly go out of the house these days cos I feel so ill. Ive lost my appetite and obviously Ive lost weight. There doesnt seem to be any definitive answer from the drs as to why I am like this and why I can have several wks when I feel a lot better only to be hit with another bout of the same symptoms which can go on for months at a time. These include severe nausea, abdominal pains, dizziness, chest pains, headaches, general fatigue, insomnia and low grade fever. Any advice on my next steps, I dont feel like I can go on like this indefinitely with no sign of hope in the near future.
Thanks
I take 125mcg thyroxine daily. This changes as and when my levels change, the most Ive ever had to take is 175mcg and the lowest is 100mcg.
I went to see a different GP on friday cos my normal dr wasnt there and Id been feeling so awful I thought Id see what he could do for me. Big Mistake!! He actually made me cry and Im not someone who cries easily. He more or less said for me to stop taking all the medications for my stomach cos they dont seem to be helping much and that I dont need to have anymore b12 injections despite my normal dr saying Id be on them for life (Id also read the same online). He wouldnt tell me my last blood test results other than to say they were ok. Then he said I was suffering from anxiety and he wouldnt prescribe anything for that other than referring me for counselling! I refused this cos I dont feel anxious just angry that no one seems to believe me when I say Im ill cos the test are all fine. I didnt dare ask about the FREE T3 and T4 cos he made me feel like a hypochondriac! He leaned back in his chair and said what did I want, when I replied a diagnosis he just said he couldnt give me one and to wait to see the gastroenterologist in June. Im hoping to make an appointment to see my original GP next week and hopefully she'll be more sympathetic. Sorry to rant on but it really got to me!!!
I went to see a different GP on friday cos my normal dr wasnt there and Id been feeling so awful I thought Id see what he could do for me. Big Mistake!! He actually made me cry and Im not someone who cries easily. He more or less said for me to stop taking all the medications for my stomach cos they dont seem to be helping much and that I dont need to have anymore b12 injections despite my normal dr saying Id be on them for life (Id also read the same online). He wouldnt tell me my last blood test results other than to say they were ok. Then he said I was suffering from anxiety and he wouldnt prescribe anything for that other than referring me for counselling! I refused this cos I dont feel anxious just angry that no one seems to believe me when I say Im ill cos the test are all fine. I didnt dare ask about the FREE T3 and T4 cos he made me feel like a hypochondriac! He leaned back in his chair and said what did I want, when I replied a diagnosis he just said he couldnt give me one and to wait to see the gastroenterologist in June. Im hoping to make an appointment to see my original GP next week and hopefully she'll be more sympathetic. Sorry to rant on but it really got to me!!!
When you see your GP ask if she checked your FREE T3 , FREET4, the frees are really important as they say how much is in the blood for use.
Pernicious anaemia is often seen in people with thyroid issues.
I had my second surgery, as some thyroid tissue grew back over my central trachea, with a nodule on,it also sent me back overactive, which was a nightmare, as you know.
I get nausea and diarrhoea intermittantely, on and off,
Have you had any endocrine gland testing, like for diabetes, or adrenal, or for PCOS, and the parathyroids tested.
Not many doctors test the frees in thyroid tests, but is the most valuable of thyroid tests.
Do you take thyroxine, ?
I have had a CT scan too and endoscopy,too,and they found nothing,
I think my gastro problems, are thyroid related.
Have you been tested for gluten tolerance or caelics disease?
I know caelics can be addictional to graves disease.
They can test for this in a simple blood test so i believe.
How are your vitamin D levels? often seen low in thyroid patients.
Please keep in touch
Nicola,xx
Pernicious anaemia is often seen in people with thyroid issues.
I had my second surgery, as some thyroid tissue grew back over my central trachea, with a nodule on,it also sent me back overactive, which was a nightmare, as you know.
I get nausea and diarrhoea intermittantely, on and off,
Have you had any endocrine gland testing, like for diabetes, or adrenal, or for PCOS, and the parathyroids tested.
Not many doctors test the frees in thyroid tests, but is the most valuable of thyroid tests.
Do you take thyroxine, ?
I have had a CT scan too and endoscopy,too,and they found nothing,
I think my gastro problems, are thyroid related.
Have you been tested for gluten tolerance or caelics disease?
I know caelics can be addictional to graves disease.
They can test for this in a simple blood test so i believe.
How are your vitamin D levels? often seen low in thyroid patients.
Please keep in touch
Nicola,xx
Thanks for taking the time to reply.
I had my thyroid levels checked a couple of weeks ago and my dr said they were ok. Dont know what the results were as she didnt say but Im planning on going back to see her tomorrow and will ask then.
Ive had a CBC, that was when they diagnosed the pernicious anemia. Prior to this I had to take folic acid for 3 months because that was low but Ive stopped now as the levels have risen again. I was also told that my iron was quite low but they said this was because my b12 was low at 150. I had 6 injections of b12 at the end of March and am due to have my next dose in June.
For me the worst thing is the nausea. Do you suffer from this too? Why did you have to have a 2nd operation after the sub total thyroidectomy? They took 90% of my thyroid out so I hope I dont have to go through that again!
The drs have been concentrating on my stomach as far as further testing goes, with me having ct & unltrasound scans & an endoscopy. I had to ask for a CBC because they didnt see any reason for my blood to be tested other than my regular thyroid levels.
Keep in touch
Claire
I had my thyroid levels checked a couple of weeks ago and my dr said they were ok. Dont know what the results were as she didnt say but Im planning on going back to see her tomorrow and will ask then.
Ive had a CBC, that was when they diagnosed the pernicious anemia. Prior to this I had to take folic acid for 3 months because that was low but Ive stopped now as the levels have risen again. I was also told that my iron was quite low but they said this was because my b12 was low at 150. I had 6 injections of b12 at the end of March and am due to have my next dose in June.
For me the worst thing is the nausea. Do you suffer from this too? Why did you have to have a 2nd operation after the sub total thyroidectomy? They took 90% of my thyroid out so I hope I dont have to go through that again!
The drs have been concentrating on my stomach as far as further testing goes, with me having ct & unltrasound scans & an endoscopy. I had to ask for a CBC because they didnt see any reason for my blood to be tested other than my regular thyroid levels.
Keep in touch
Claire
hi claire ive just had to walk back to my computer.
have you had a TSH, FREET3, FREET4 done i was wondering if you have to much thyroxine , thyrotoxicosis, which is why you have weight loss, chest pain, diarrhoea.
When i have too much thyroxine in the blood i get those symptoms.
FREET3, FREET4 are the ones to check.
Make sure your doctor doess the free and not just youre normal T3.T4
Just an idea ive just had.
Speak to you soon
Nicola.
have you had a TSH, FREET3, FREET4 done i was wondering if you have to much thyroxine , thyrotoxicosis, which is why you have weight loss, chest pain, diarrhoea.
When i have too much thyroxine in the blood i get those symptoms.
FREET3, FREET4 are the ones to check.
Make sure your doctor doess the free and not just youre normal T3.T4
Just an idea ive just had.
Speak to you soon
Nicola.
Oh my god , welcome to the club.
Sorry claire if i was rude then but you sound just like me.
I have had graves disease for over 12 years, i had a sub-total in 1998, and have just had my second surgery done 2009, due to this blasted disease.
Have you had your adrenals checked, as they go hand in hand with thyroid issues,
What is your latest thyroid blood tests?
Have you had a caelics blood screen also?
I have been doing like this on and off for 12 years myself, its like being on a merrygoround,
Have you had any skin changes?
I think you need some tests for thyroid, adrenals, and a blood test for vitamins as well
you may be low on vitamin D, as well as a full blood count
.
I even get the pains at the top of my feet too, ive always wondered why the pain comes there.
Have you had your calcium levels done too?
Sorry ive asked a lot of questions im trying to get a better picture.
As well as being really interested in this post, as we seem alike.
Good luck
Nicola
Sorry claire if i was rude then but you sound just like me.
I have had graves disease for over 12 years, i had a sub-total in 1998, and have just had my second surgery done 2009, due to this blasted disease.
Have you had your adrenals checked, as they go hand in hand with thyroid issues,
What is your latest thyroid blood tests?
Have you had a caelics blood screen also?
I have been doing like this on and off for 12 years myself, its like being on a merrygoround,
Have you had any skin changes?
I think you need some tests for thyroid, adrenals, and a blood test for vitamins as well
you may be low on vitamin D, as well as a full blood count
.
I even get the pains at the top of my feet too, ive always wondered why the pain comes there.
Have you had your calcium levels done too?
Sorry ive asked a lot of questions im trying to get a better picture.
As well as being really interested in this post, as we seem alike.
Good luck
Nicola
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