help

[thyroidburnout]

I have just been told my thyroid is burnt out. I had hashimotos desease and under active thyroid. My Doctor only does the tsh test. I used to take 3 tablets a day about 6 years ago was happy, content, had energy etc.  Anyway since returning to the Uk. My new Doctor only tests tsh. I have terrible depression. constipation, sluggish.tiredness, over weight hair falling out etc and severe depression.  I am very unhappy. My Doctor has decreased my tablets to 1.5 and wants to decrease it even further. I am getting worse and piling on the weight. I tried explaining to him how much betterI am on more tablets but he does not listen. He says it is not good for my heart and I should be taking less but when I take even 2 tablets I feel so much better. I feel I should be back on the 3. Please help and advise me what I can do. Thanks

[goolarra]

Your FT3 is at 96%, very high.  Your FT4 is well above range.  According to your labs, you are very overmedicated.

Levothyroxine is measured in micrograms (mcg) usually.  So you are probably taking 200 mcg, which is equal to 0.2 mg.  

I'm afraid that your FT3 and FT4 levels have done nothing toward getting you a meds increase.  They both agree with your TSH that you are overmedicated.  

You might try researching "thyroid hormone resistance", which is a condition in which serum thyroid hormone levels have to be extremely high to eliminate symptoms.  With these levels and hypo symptoms persisting, you obviously have something more going on that just ordinary hypo.  Another thing you might investigate is "reverse T3 dominance", which is also called Wilson's Syndrome or Wilson's temperature Syndrome.  

Merry Christmas!

[thyroidburnout]

Hello,
I would like to thank all of you that helped me. All your answers were great and I accidentally clicked on the wrong thing saying best answer. They were all good. Please comment. I had my readings done. This is what they are.

serum free triiodothyronine level xaerq    
result was 6,6 pno;/L(3.1-6.8)

serum free T4 level xaerr  above range   27 pmol/l (10.0-22.0)

TSH level xaelv  below range 0.02 mu.l ( 0.3-5.5)


I am taking 200 mg or is it .2 not sure. I used to take 3 tablets a day and am fighting to go back to 3..  Please advise.
Thanks Jill   and Merry Christmas and Happy New Year.

[thyroidburnout]

Hi
Thanks so long. I am going to see the old Doctor next week.. If he still wont help I will travel the 100 miles to see the Doctor you suggested. How do I fine him. I cant see him advertised??
Thanks
Jill

[gimel]

Looking at a map, it appears that Bristol is about 60 km from Bournemouth.  He is a private doctor.  Just wanted to make sure you know that.  

Try clicking on your name again.  Should take you to your personal page.  Then find messages in about the center of page, and click on that.  Should get you to a PM from me, with doctor's name.  Following is a letter that I wrote for another member to give to her doctor.  I think it might be useful for you also.  

Dear Dr. _________

I am sending you this letter in hopes you will take time to read and prepare to discuss with me at next opportunity.  I am writing because I still suffer with numerous hypothyroid symptoms, even though my test results are  within the reference range, and you have declined to increase my thyroid meds.  I have spent considerable time searching and reading related information and discussing all of it with an experienced and knowledgeable friend.  I have learned  a great deal, which leads me here.

First, the "Immaculate TSH Belief' is a big problem for hypo patients.  Until this test was invented about 40 years ago, hypo patients were routinely treated clinically.   One of the many places this is discussed is in this interview with Dr. Derry, which you will find revealing.

http://www.thyroid-info.com/articles/david-derry.htm

Next is the assumption that TSH accurately reflects levels of the actual thyroid hormones.  In actuality, TSH cannot be shown to correlate well with either Free T3 or Free T4, much less with symptoms, which should be most important.   In fact, scientific studies such as this one, have shown that hypo symptoms correlated best with Free T3, while Free T4 and TSH did not correlate at all.  

http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002

Next is that TSH is even less useful as a diagnostic by which to medicate a hypo patient who is already taking thyroid meds.  This link from the British Medical Journal and quote confirm that position.

http://www.bmj.com/content/293/6550/808
"To establish their role in monitoring patients receiving thyroxine replacement biochemical tests of thyroid function were performed in 148 hypothyroid patients studied prospectively. Measurements of serum concentrations of total thyroxine, analogue free thyroxine, total triiodothyronine, analogue free triiodothyronine, and thyroid stimulating hormone, made with a sensitive immunoradiometric assay, did not, except in patients with gross abnormalities, distinguish euthyroid patients from those who were receiving inadequate or excessive replacement. These measurements are therefore of little, if any, value in monitoring patients receiving thyroxine replacement."

Further, from the full pdf of this study, further evidence that suppressed TSH is frequently experienced when taking adequate dosage of thyroid meds.   "When FT4 levels were normal, however, TSH levels were normal in only 51.5% and abnormal in 48.5%. We also examined the possibility that FT4 levels may remain within normal range when TSH is suppressed during L-thyroxine treatment for goitre or cancer. FT4 and TSH were measured in 45 patients on L-thyroxine as TSH suppression treatment. TSH was suppressed in 23 patients (51.1%), normal in 20 (44.4%) and elevated in 2 (4.5%). When TSH was suppressed, FT4 was elevated in 30.4% but normal in 69.6% of patients."


The next big issue is reference ranges.  Even though my test results fell within the range, from my personal experience, and what I have learned, that clearly does not mean that level is adequate to relieve symptoms.  The ranges are far too broad  because the ranges were erroneously established.   The ranges were established based on all patient data for which test results were available.  Then assumptions were made that about 2.5% of patients were hypothyroid and about 2.5 % were hyper, and reference range limits were established at those points.  About 10 years ago, the AACE finally acknowledged there are many, many more than 2.5 % hypo and hyper.  After purging the data base and recalculating the range limits, they made a huge change to the TSH range from .5 - 5.0, down to 3 - 3.0.  Unfortunately TSH is a poor diagnostic, as discussed above, so this change didn't help hypo patients very much.  Plus most labs and doctors continue to use the old range, even after 10 years.  The biggest impact from the acknowledgement that the TSH range was wrong, is that the ranges for Free T3 and Free T4 were established the same way as TSH.  Thus, it is extremely unfortunate that the ranges for Free T3 and Free T4 have never been corrected like done for TSH.  

If the data bases for Free T3 and Free T4 were purged of suspect patient test data, as done for TSH, the new ranges would be more like the upper half of the current ranges.    This clarifies why so many hypo patients with Free T3 and Free T4 in the low end of their ranges are still symptomatic.  There is some good info in this link.  Note the statement, "The Free T3 optimal range being above the midpoint is corroborated by three different sources.", and the references to scientific studies.  

http://tiredthyroid.com/optimal-labs.html


So, if TSH and the existing reference ranges for Free T3 and Free T4 are inadequate to diagnose and treat hypo patients, what should be done.  From my position, clearly I think the best approach is clinical treatment.  During this search, I found a letter written by a thyroid doctor for patients that he sometimes consults with, after initial evaluation and testing.  The letter is then sent to the participating PCP of the patient to help guide treatment.  In the letter, please note this info.    "the ultimate criterion for dose adjustment must always be the clinical response of the patient. I have prescribed natural dessicated thyroid for your patient (Armour, Nature-Throid) because it contains both T4 and T3 (40mcg and 9mcg respectively per 60mg). This assures sufficient T3 levels and thyroid effects in the body. Since NDT has more T3 than the human thyroid gland produces, the well-replaced patient’s FT4 will be below the middle of its range, and the FT3 will be high “normal” or slightly high before the next AM dose."   This is a link to the doctors website.

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

I greatly appreciate your time and patience in taking up my concern.  I hope that I have given you enough evidence to reconsider my treatment.  I assure you that I have not selectively chosen this info, just to support my request.  I can provide references to more scientific extensive scientific evidence than you would ever want to read, along the same lines.  I hope this will persuade you to at least let me have a trial of increased increasing meds, and Free T3 and Free T4 as necessary to relieve my hypo symptoms.  I look forward to a full discussion when I return for my next appointment.  

Sincerely,
_________________


So, I would make copies of the links listed in the letter and attach them to the letter and give it to your doctor and see how he responds.    

[thyroidburnout]

Tried clicking on my name, just goes to other peoples thyroid things. to Is Bristol very far from Bournemouth. If he is very good I will have to  go. Seems very unfair that my Doctor wont sort it out.

[thyroidburnout]

Please send me the Scientific evidence and studies. How far is Bristol from Bournemouth?

[gimel]

To get the PM, just click on your name and then click on messages.  

[gimel]

Your doctor is just complying with the NHS directives and doesn't know any better, or is unwilling to ignore the NHS.  So, we could provide you with lots of scientific information that refutes your doctor's treatment protocol and you can try to browbeat him into submission like the UK member quoted above.   Or you can go private.  In case you decide to do that I am sending a PM with the name of a member recommended doctor that is in Bristol.  It might be your best alternative at this point.  

[thyroidburnout]

It is easy to say. I have asked and asked but he is not listening. He keeps going on the tsh test only and says that they dont test t3 and t4 here.
Please help I am getting so desperate

[gimel]

I totally agree with goolarra.  We are well aware of the difficulties of getting adequate testing and treatment for thyroid problems in the UK.  If unable to get to a private doctor, I thought you might benefit from this bit of advice from a fellow UK member.  After much difficulty she was finally able to get the testing and treatment she needed.  This is how she described what it took to get there.

"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?"

We can provide the knowledge you need, and lots of references to scientific studies to support what we say.  You can use that and pressure  doctors to get what you need, and eventually you can get there.  

[goolarra]

Adjusting meds on the basis of TSH alone is totally inadequate.  Your doctor should be testing FT4, at the very least.  FT3 should be tested as well, but you are going to have a hard time with that in the UK unless you go private.

Once on meds, TSH is often suppressed, making the doctor think we are hyper (overmedicated) when we are not.  Trust your symptoms...you sound very hypo.  You have to find a new doctor or get some private testing, find out what your FT3 and FT4 are, take those to your current doctor and see if he'll listen when the numbers are right in front of him.