tsh high gp ignoring!!help

[shez84]

I had a total thyroidectomy nearly 3 months ago. My consultant has discharged me back to my gp as there's no complications. But my gp ignores my tsh levels completely. I had a tsh level of 89.75 mu/l  and a free t4 level of 11.9, my doctor sent me away saying its fine. Luckily I had a consultant appointment five days later and he was mortified that I'd been sent away. He explained that my tsh needs to be below fifty and my other levels need to increase.so he increased my thyroxine to 100. The consultant wrote a stern letter to my gp explaining this as I was being discharged back to my gp. Well since then I've had another tft done. My levels were tsh 61.1 and t4 18.4. But again my gp sent me away without increasing my meds. Yet my results are not at the levels my consultant said they need to be. I am genuinely unwell, tired all the time, struggling to eat and am unable to gain weight, in fact its dropping off, I'm now 8 stone whilst being nearly 6 foot. Any guidance as what I should do or how I can help myself. As I have searched hypothyroidism and weight loss but apparently they don't tend to happen together. Please any advice

[gimel]

Yes, a load of bad bananas.  LOL  

Free T3 largely regulates metabolism and many other body functions.  It is needed for all organs and tissues of the body.  What possible difference could it make if you no longer have a thyroid gland?  That only means that you are totally dependent on thyroid med, and if it is a T4 med, then your body has to convert even more T4 than previously when your thyroid gland produced at least some T3.  So it is vitally important to know your Free T3 level.  As you can see in this link, the scientific study concluded that hypo symptoms correlated best with Free T3, and not at all with Free T4 or TSH.

http://informahealthcare.com/doi/abs/10.1080/13590840050043521

[shez84]

Thank you for your information it is a big help. You are right, unfortunately over here the doctors rarely listen to patients. I did look into going private but they don't include pre existing conditions. I will continue to look into the condition more, I am due for another blood test in 6 weeks to see if the increased dosage has helped. I was told that as I don't have a thyroid they no longer check the free t3 levels as its not needed? Very baffling as all the doctors have said seems to be a load of bananas lol

[gimel]

Not really sure why the doc would say that he wanted your TSH to be below 50; however, when taking thyroid med, the TSH frequently becomes suppressed when taking adequate dosage of thyroid med.  The most important thing of course is to relieve hypo symptoms.  That typically requires Free T4 at the middle of its range, at minimum, and Free T3 in the upper third of its range, or as necessary to relieve symptoms.  According to the dictates of the NHS you have only been tested for Free T4 and TSH.  You need to insist on being tested for Free T3 and Free T4 every time you go in for tests.  Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.

A good thyroid doctor will treat a hypothyroid patient clinically by testing and adjusting Free T4 and Free T3 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results, and especially not TSH results.  You can get some good insight from this link written by a good thyroid doctor.

http://www.hormonerestoration.com/Thyroid.html

In addition to Free T4 and Free T3 you need to test for Vitamin D, B12 and ferritin.  Hypo patients are frequently too low in the range for those as well.  Low levels can cause symptoms that mimic hypothyroidism.  Low D or low ferritin can also adversely affect metabolism of thyroid hormone.  D needs to be about 55-60, B12 in the upper end of its range, and ferritin should be 70 minimum.  If you test and confirm they are low you can supplement on you own to optimize.  

Since you are in the UK you may find it difficult to get all this done and get the doctor to treat clinically, as described.  Another option is to go private; however, you can also consider the approach taken by another UK member who had difficulty getting the necessary testing and treatment.  This is her description of how she was ultimately succcesful.

"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?"

[shez84]

Also the samples have been analysed by a new method on the Roche analyser and states to check the reference range as it may be different to the previous one.
Not really sure what that means

[shez84]

None of it makes sense and my doctors don't seem to have a clue. I'm in the UK. This is exactly what the blood tests show- serum tsh level(XaELV) above range- 89.75 mu/L (0.27-4.2) result phoned to sundon park as above high reference limit. Serum free t4 (XaERr) below range - 11.9 pmol/L (12.0-22.0) below low reference limit. My medication was then increased to 100mcg levothyroxine.
My latest results were only written down and read FT4 - 18.4 and TSH 61.1 and after a second opinion my meds have been increased to 125mcg. My consultant said my TSH will never be in the normal range as I have no thyroid but we have to aim for it to come below 50 mu/L. To be honest I struggle to understand as my consultant explained it different to my doctor. I'm scared that they don't seem to know what is meant to be done. Hope this info helps you understand a bit more. Since my operation I have caught so many bugs, struggling to eat and losing weight. My hair is falling out and I'm so tired and cold all the time

[gimel]

Something just doesn't add up with those TSH results.  I've never heard of a doctor targeting below 50 for TS.  Could you please post the actual results and their reference ranges and measurement units shown on the lab report?

Are you in the UK?