Feeling rotten

[tinky74]

Hello, I have been taking Levothyroxine for 6  years now for underactive thyroid my dose over the years has ranged between 100- 275mg a day and i have bloods done every 6 weeks, each time the dose changes and at pres i am taking 125 one day and 150mg the next. The problem is i still feel terrible,i itch all over, my hair sheds and i am losing lots of weight,i also feel so cold when i am still so end up wrapped up even in the summer. I have asked the gp if there could be other issues but he says its because my dose needs changing all the time and until they find a regular dose the symptoms will continue. I have lost about 4st this year and which makes me well underweight (8st 6) but the gp laughed this off too saying people like me don't have to worry about heart attacks as i am naturally slim. Can anybody suggest what may be going on here as i am worried and feel silly everytime i see the doctor.

[gimel]

If you think it would help I can give you some links to scientific studies that might jolt the doctor out of his current approach.  Another alternative might be to consider going private.  If that is a possibility, please give me your location and I might have a member recommended doctor's name for you.  

[tinky74]

Thank you for your reply Gimel, I have struggled with getting Doctors to help me to find any alternatives to the tests that they give already, Just to give you an idea i was told when i tested positive for antibodies that its not so bad "at least you get all your prescriptions for free from now on" I have asked to see a thyroid consultant but they are saying that until they regulate my meds then there is no need for that as its the dosage that is causing the problems but i am now at a stage where i feel unwell all the time. I recently had awful memory problems and went back where he tested my B12 levels and did a fasting blood test but again it came back that the only problem was that i needed to increase the Levothyroxine, my memory has improved but over the weeks it starts to fail again and my bloods come back wrong again,i know they only test TSH and will ask them to check the others. Thankyou for your advice, 6 years ago i was sitting a degree,working,looking after my gorgeous kids and had bags of energy and i know that my gp hasn't met that person so he can't see how much this has impacted on all of our lives i will make another appointment and go armed with the information!

[gimel]

Since you are from the UK I imagine the doctor is only testing you for TSH, or TSH and Free T4 at most.  Also I expect that you are being dosed based on TSH.  This simply doesn't work.  TSH is a pituitary hormone that is affected by so many things that it doesn't correlate well with either of the biologically active thyroid hormones, Free T3 and Free T4, much less correlate with symptoms, which should be the most important consideration.

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with after initial tests and evaluation.  The letter is then sent to the participating doctor of the patient to help guide treatment.  In the letter, please note the statement, "the ultimate
criterion for dose adjustment must always be the clinical response of the patient."

http://hormonerestoration.com/files/ThyroidPMD.pdf

If you haven't been tested for Free T3 and Free T4 you should do so.  Free T3 is the most important test because scientific studies have shown that it correlates best with symptoms, while Free T4 and TSH did not correlate at all.  So, in assessing your thyroid status, symptoms are the most important, followed by Free T3 and then Free T4.  

Since hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin, it would be a good idea to test those as well.

Getting all these tests done and getting treated clinically in the UK, is most times a very difficult task.  A  UK member who was successful with both made this observation.

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

Do you think you might be able to get those tests and get treated clinically?

[goolarra]

Please post your recent thyroid labs (FT3, FT4 and TSH if you have them) and include reference ranges, which vary lab to lab and have to come from your own lab report.  If you do that, we can evaluate the adequacy of your testing and treatment.