Aa
TIME TO GIVE UP????
Hello guys, well my
TSH is now up to 10.8 my T4 is low @ 8.4, ESR high @ 41 and WBC high @ 13.4 Vit D lower now just 10, was 12 back in May when I last posted, arghhh I feel rotten and helpless...
I dunno what to do, my GP has now taken me of my T3 meds leothyronine as she says its not working and put me back on levothyroxine 200mcg which never got my TSH down which is why I asked to change. My Vit D level is so low it says on the blood results servre vit D deficiency but GP given nothing for it was told to buy over counter, last time she put mw on 400iu a day, didn't work!! My ESR and WBC (white blood count) has come back high for a second time, GP not concerned.... I am so fed up feeling so rubbish, my whole body aches, the cramps are awful my legs feet and hands keep going numb n get pins and needles, headaches, feeling dizzy and nausea, slightest exertion and I feel sick and faint I can't live like this anymore it's been 3yrs now and I am getting nowhere.
WHen this first started it as a fight to prove I was hypo at all now GP has clear evidence but does nothing but look down her nose at me. I had to order my own Vit D test as she had never checked it I am just shocked she seems to think I don't need treatment when from all my research it is very clear I do and as does anyone with thyroid problems cos until vit D levels are optimum thyroid meds wont work..... many of the symptoms are the same as being hypo so just getting my vit D level where it should be could make me feel 40% better or more and take away much of the pain and aches.......
IF I ever get to the bottom of this, I shall be complaining about my GP to the medical board, she is useless and not fit to practice, she prescribed me tramadol a few months back, good job I read the leaflet and never took it as it would of reacted with my citalipram, I rang the surgery and was told to throw it away and she wrote me a prescription for a different pain killer, not the first time she has done this, I have no faith in my GP at all have tried them all at my surgery, all not got a clue about thyroid conditions and I can't change surgery at the moment so to say I am frustrated, feeling totally alone and fed up is an understatement.
Need to hear from people like me plz? Advice, a little hope? understanding of blood results? anything please do post back, even if u can't offer advice sometimes is just nice to know there others out there who really do UNDERSTAND what ur going through, this disease is so misunderstood and those who have it can feel so alone and helpless.
SORRY for rant guys, u know how it is sometimes, just needed a good moan. aha... :) xxx
TSH is now up to 10.8 my T4 is low @ 8.4, ESR high @ 41 and WBC high @ 13.4 Vit D lower now just 10, was 12 back in May when I last posted, arghhh I feel rotten and helpless...
I dunno what to do, my GP has now taken me of my T3 meds leothyronine as she says its not working and put me back on levothyroxine 200mcg which never got my TSH down which is why I asked to change. My Vit D level is so low it says on the blood results servre vit D deficiency but GP given nothing for it was told to buy over counter, last time she put mw on 400iu a day, didn't work!! My ESR and WBC (white blood count) has come back high for a second time, GP not concerned.... I am so fed up feeling so rubbish, my whole body aches, the cramps are awful my legs feet and hands keep going numb n get pins and needles, headaches, feeling dizzy and nausea, slightest exertion and I feel sick and faint I can't live like this anymore it's been 3yrs now and I am getting nowhere.
WHen this first started it as a fight to prove I was hypo at all now GP has clear evidence but does nothing but look down her nose at me. I had to order my own Vit D test as she had never checked it I am just shocked she seems to think I don't need treatment when from all my research it is very clear I do and as does anyone with thyroid problems cos until vit D levels are optimum thyroid meds wont work..... many of the symptoms are the same as being hypo so just getting my vit D level where it should be could make me feel 40% better or more and take away much of the pain and aches.......
IF I ever get to the bottom of this, I shall be complaining about my GP to the medical board, she is useless and not fit to practice, she prescribed me tramadol a few months back, good job I read the leaflet and never took it as it would of reacted with my citalipram, I rang the surgery and was told to throw it away and she wrote me a prescription for a different pain killer, not the first time she has done this, I have no faith in my GP at all have tried them all at my surgery, all not got a clue about thyroid conditions and I can't change surgery at the moment so to say I am frustrated, feeling totally alone and fed up is an understatement.
Need to hear from people like me plz? Advice, a little hope? understanding of blood results? anything please do post back, even if u can't offer advice sometimes is just nice to know there others out there who really do UNDERSTAND what ur going through, this disease is so misunderstood and those who have it can feel so alone and helpless.
SORRY for rant guys, u know how it is sometimes, just needed a good moan. aha... :) xxx
I cannot give you such good advice as the others have, but I can tell you I feel the same way you do, as my own thyroid problems have never been properly addressed... and I very much sympathize with you.
My only suggestion is that you go in with all of your issues written out on a piece of paper, and really throw down an attitude with your new doctor. Be aggressive, but not rude. Try not to be emotional (I know that is tough, because I am one who, when I get angry, will begin to cry - that is usually the signal for whomever has angered me to get out of there as quickly as possible!) but do keep an intense amount of eye contact - just enough to make them a bit nervous but not fearful :o) Sounds strange, but it works. They will know you mean business and you are not there to whine but to discuss your problems intelligently. (They seem to think women are all whiners, don't they? Even many female physicians seem to have this misconception.)
Tell him/her that you will NOT be ignored, that you have done your research, (mention that you know how doctors have precious little time for new research, and that you would be happy to print out what you have found - they always seem to appreciate when you say you know how little time they have to spare, because sadly, it is true.) and then lay out your medical issues one by one from your list and tell him/her that the lack of answers, lack of compassion and most importantly the errors made that could have harmed you have made you determined that someone IS going to listen to you.
Obviously your health disorder is complicated - one would think a physician would be interested enough to solve the problem - it is rather like solving a mystery, isn't it? I just don't understand why so many doctors spent hundreds of thousands of dollars, years of their lives and sleep missed to get a medical degree, all so they can look at us and say "I don't know." Heck I can talk to myself and get that for free!!! Good luck next week and I will say a prayer that all goes well for you!
My only suggestion is that you go in with all of your issues written out on a piece of paper, and really throw down an attitude with your new doctor. Be aggressive, but not rude. Try not to be emotional (I know that is tough, because I am one who, when I get angry, will begin to cry - that is usually the signal for whomever has angered me to get out of there as quickly as possible!) but do keep an intense amount of eye contact - just enough to make them a bit nervous but not fearful :o) Sounds strange, but it works. They will know you mean business and you are not there to whine but to discuss your problems intelligently. (They seem to think women are all whiners, don't they? Even many female physicians seem to have this misconception.)
Tell him/her that you will NOT be ignored, that you have done your research, (mention that you know how doctors have precious little time for new research, and that you would be happy to print out what you have found - they always seem to appreciate when you say you know how little time they have to spare, because sadly, it is true.) and then lay out your medical issues one by one from your list and tell him/her that the lack of answers, lack of compassion and most importantly the errors made that could have harmed you have made you determined that someone IS going to listen to you.
Obviously your health disorder is complicated - one would think a physician would be interested enough to solve the problem - it is rather like solving a mystery, isn't it? I just don't understand why so many doctors spent hundreds of thousands of dollars, years of their lives and sleep missed to get a medical degree, all so they can look at us and say "I don't know." Heck I can talk to myself and get that for free!!! Good luck next week and I will say a prayer that all goes well for you!
Dont give up.
Learn , learn, learn - from here and other recources. Interview docs before you become a patient - talk to the nurses that work with them. I went to 7 doce about thyroid. The one I choose still isnt the best but he usually listens and repects my thyroid knoledge. Find a better doc.
Magnessium. The oxide version really does nothing at all, and that is the only type you will find in the grocery ar drug store. Go to a suppliment / viamine store. Mag glycinate is trully amasing. Or get the CALM mix. Take at night apart from thyroid med.
Learn , learn, learn - from here and other recources. Interview docs before you become a patient - talk to the nurses that work with them. I went to 7 doce about thyroid. The one I choose still isnt the best but he usually listens and repects my thyroid knoledge. Find a better doc.
Magnessium. The oxide version really does nothing at all, and that is the only type you will find in the grocery ar drug store. Go to a suppliment / viamine store. Mag glycinate is trully amasing. Or get the CALM mix. Take at night apart from thyroid med.
I am trying to get a new dr, am seeing a new dr at surgery next week if that fails will change surgery. so fed up,..... thanks for advice tho
I agree with Barb135.
The first thing I thought of was Vit B-12 as well as the Vit D supplement was NOT EVEN close to doing anything. I take 2,000 IU a day during the winter. My wife takes I think 4,000 to 6,000.
you may also think about magnesium as well. I know Magnesium comes in several different types. Magnesium oxide being the most common. But I recently read that type may not be very useful or absorbed well (of course after I just bought a huge bottle of it). So you well so you may want to do more research on this as well.
Selenium is another thing to have checked. This is said to help with the conversion of T4 thyroid into the active T3 hormone that your body actually uses. However too much Selenium can be bad for you too. So you may want to get this level checked.
You NEED to find a new Doctor ASAP. Why continue on with a Dr you do not trust and know is not treating you properly or is not knowledgeable in Thyroid?
The first thing I thought of was Vit B-12 as well as the Vit D supplement was NOT EVEN close to doing anything. I take 2,000 IU a day during the winter. My wife takes I think 4,000 to 6,000.
you may also think about magnesium as well. I know Magnesium comes in several different types. Magnesium oxide being the most common. But I recently read that type may not be very useful or absorbed well (of course after I just bought a huge bottle of it). So you well so you may want to do more research on this as well.
Selenium is another thing to have checked. This is said to help with the conversion of T4 thyroid into the active T3 hormone that your body actually uses. However too much Selenium can be bad for you too. So you may want to get this level checked.
You NEED to find a new Doctor ASAP. Why continue on with a Dr you do not trust and know is not treating you properly or is not knowledgeable in Thyroid?
COMMUNITY LEADER
First off, what's the reference range for the T4 and is that total or free? Reference ranges vary from lab to lab, so must come from your own report. Testing for TOTAL T4 is considered obsolete and of little value; you need to get the FREE T4 test and you also need a FREE T3 test.
We've heard from other members that getting proper treatment for thyroid disorders in UK, is very difficult because of the NHS. That said many doctors, the world over don't know how to treat thyroid problems.
Vitamin D does not directly affect thyroid function. It aids in the absorption of calcium and aids the immune system. Vitamin D deficiency presents with similar symptoms as being hypo; if you are only taking 400 iu/day, you aren't going to raise your levels very fast, if at all. Some members have reported having to take mega doses to get their levels up. I, personally, take 2000 iu/day, but with low levels, you might be able to take more for a period, then retest.
You also have some symptoms of vitamin B12 deficiency (numbness/pins/needles in hands/feet, fatigue, etc), so you should get that checked, as well. B12 deficiency, added to thyroid disorder can be debilitating; I know, I've been there. I, currently, self inject B12 on a weekly basis to keep my levels stable.
White blood cells help fight disease, so your elevated level could indicate an infection, an immune disorder (such as Hashimoto's) or other illness.
It sounds like you actually have multiple issues, but keep in mind that TSH is a pituitary hormone and not actually indicative of thyroid function. T4 is the storage form of thyroid hormones; it must be converted to T3, which is the active form of hormone (actually used by the cells). Some of the T4 and T3 in your blood will be bound by protein and unusable; therefore, you need to test for FREE T3 and FREE T4, which will show the levels that are unbound and actually available for use in the cells of your body. I find it irresponsible of your doctor to have given you a T3 med without checking your FT3.
Many doctors refuse to test for Free T3, so it's often a struggle to get proper treatment, particularly, in UK. You need to try to find a good thyroid doctor. I'm not sure why you can't change to a different surgery, but until you find a doctor who is willing to treat you clinically, you won't get well. It's your health; keep fighting for it.
We've heard from other members that getting proper treatment for thyroid disorders in UK, is very difficult because of the NHS. That said many doctors, the world over don't know how to treat thyroid problems.
Vitamin D does not directly affect thyroid function. It aids in the absorption of calcium and aids the immune system. Vitamin D deficiency presents with similar symptoms as being hypo; if you are only taking 400 iu/day, you aren't going to raise your levels very fast, if at all. Some members have reported having to take mega doses to get their levels up. I, personally, take 2000 iu/day, but with low levels, you might be able to take more for a period, then retest.
You also have some symptoms of vitamin B12 deficiency (numbness/pins/needles in hands/feet, fatigue, etc), so you should get that checked, as well. B12 deficiency, added to thyroid disorder can be debilitating; I know, I've been there. I, currently, self inject B12 on a weekly basis to keep my levels stable.
White blood cells help fight disease, so your elevated level could indicate an infection, an immune disorder (such as Hashimoto's) or other illness.
It sounds like you actually have multiple issues, but keep in mind that TSH is a pituitary hormone and not actually indicative of thyroid function. T4 is the storage form of thyroid hormones; it must be converted to T3, which is the active form of hormone (actually used by the cells). Some of the T4 and T3 in your blood will be bound by protein and unusable; therefore, you need to test for FREE T3 and FREE T4, which will show the levels that are unbound and actually available for use in the cells of your body. I find it irresponsible of your doctor to have given you a T3 med without checking your FT3.
Many doctors refuse to test for Free T3, so it's often a struggle to get proper treatment, particularly, in UK. You need to try to find a good thyroid doctor. I'm not sure why you can't change to a different surgery, but until you find a doctor who is willing to treat you clinically, you won't get well. It's your health; keep fighting for it.
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