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Thyroid Disorders Community
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Avatar universal

help for me and others

Hi,
I have Hashi's. I'm currently 33yrs old and a bloke. I was diagnosed about 3years ago with a tsh of 40. I had a very hard year or so of bursting into tears and feeling very depressed/ill and unable to function... things have been slightly more stable for the last year and looking back the period around diagnosis just seems like a blurr.. I'm now on 175mcgs of levothyroxine but I still feel only about 60%. I can honestly say I haven't felt really good and healthy for about 5years now. I work hard at trying to be healthy I go through periods of cycling alot, swimming alot etc, but somthing will allway knock me back. usually in winter I'll start to feel fatigued then, i'll get a bug and; bang! thats me stuffed for about 5 months, back ache, constant headaches, massive fatigue etc etc.... I've seen gp's and endo dr's, the last endo I saw maybe 5 months ago, said i could increase my levo, he basically said the "as long as TSH was detectable then it was ok to go up" so I went up from 150 -175. felt slightly better for a month or so  and then started to slide again. I've booked another bood test for next week, and i'm fairly confident my tsh will be low and everything else in the normal range... I used to be very atheletic, surfed alot, competative cycling etc, but its just seemed so far from achaivable in the last few years. at the moment the idea of riding my bike seems impossible.... I just want to lie in bed and have hot baths....

anyway the reason I said 'help me and others' is that I work for depression and anxiety service and I've noticed that a disproportionate number of my patients have "treated" thyriod problems, or a family history of thyroid problems.  Can anyone reccomend and decent literature on living with thyriod conditions?? I'm thinking about evidence based rigorous stuff that I can point patients towards. So many people I know still have symptoms despite being treated, and they just get refered to us for some CBT as the dr's no longer see it as a physical problem..... I can understand the GP's position on this, they only have the information they've been trained in/given, but it seems so obivious that ''normal range' doesn't nessercarily mean symptom free. yet there doesn't seem to much support or literature around living with the remaining symptoms and/or reducing them... well there is, but not that's acknowledge by the medical community....

sorry for rambling on.... I try to not bore my friends with inccescant moaning about my thyroid so I gues you lot are getting the brunt! sorry! :)

O
8 Responses
Avatar universal
Hi Ozzy and welcome to the Forum.  Another bloke here, too.  We're kind of outnumbered on the Forum, but the sheilas tolerate us pretty well.  LOL  I think I can provide you just what you are looking for in the way of scientific study data and other info.  So where should we start?

Your story about still having symptoms, even though you are on a hefty dose of thyroid meds is a familiar one to us.  We usually find that it is due to the patient either not getting enough medication, or the wrong kind of meds, or there are other deficiencies that haven't been tested and corrected.  

Your story sounds very much like mine.  I was on 200 mcg of Synthroid for over 25 years, with a TSH of about .05, and still had lingering hypo symptoms.  I accidentally found the Forum here, and began to learn about the importance of testing beyond TSH and total T4, which was the only testing ever done for me.  With my new knowledge, I got my current doctor to test for free T3 and free T4, along with TSH.  I found my FT3 to be in the low end of the range, while FT4 was in the upper part of its range.  I managed to convince my doctor to prescribe a combo T4/T3 med and raised my FT3 level into the upper part of its range and felt best ever.  

If you are not familiar with FT3 hormone, it is the small part of total T3 that is unbound (thus free) of protein molecule, and thereby biologically active.  FT3 largely regulates metabolism and many other body functions.  Scientific studies have shown that FT3 correlates best with hypo symptoms, while FT4 and TSH did not correlate very well at all.

Most doctors have what is called the "Immaculate TSH Belief" and incorrectly believe that TSH tells them all they need to know.  Others will do some testing beyond TSH, but usually it is only total T4.  Sometimes they will test for FT4, but most resist testing for FT3.  Their reasoning is that since T4 converts to T3, if they know FT4, then they can estimate FT3 adequately.  The mistake with this thinking is that many people do not convert T4 to T3 very well, especially when taking large doses of T4 meds, it seems.  In view of the vital role of FT3, why not just test and be sure?  Hard to understand.  I'm sure that some of it relates to cost of testing and insurance.

The next problem is that even when testing is done, many doctors would look at results such as mine and say that I was within the "normal" range and nothing further needed.  Unfortunately the reference ranges are far too broad.  The ranges for FT3 and fT4 have never been corrected like was done for TSH 8 years ago.  At that time the AACE came to the conclusion that there were far more hypo patients than predicted by their reference range.  When they purged their data base of suspect hypo patients and recalculated the range there was a huge change from .5 - 5.0 down to .3 - 3.0.  Unfortunately most doctors and labs have yet to adopt this change even after 8 years.  

I am absolutely certain that the ranges for FT3 and FT4 have the same error.  Their data bases still include the suspect hypo patient data and the ranges have not been revised like TSH.  I am certain that this is why we hear from so many members with test results in the lower end of the ranges for FT3 and FT4, and their doctors have pronounced them "normal", yet they still have hypo symptoms.

If I haven't put you to sleep by now, I should tell you that all my searching on the net has also alerted me to the fact that there are numerous scientific studies out there showing that the variability in test results for all three, TSH, FT3 and FT4, is such that trying to medicate a thyroid patient based on these test results alone is futile.  The best way is to go back to the old way it was done, which was to treat a patient clinically, based on symptoms and use tests as markers of changes in blood levels as medication is changed.  Then when a patient gets to what I call the "sweet spot" where he feels best, you know the thyroid hormone levels that correspond with that.  Along that line, the following are quotes taken from a large study.

"Our data indicate that the reference ranges for serum total
thyroxine, analogue free thyroxine, and thyroid stimulating
hormone in patients receiving thyroxine replacement are different
from conventional reference ranges. It is clear from table IV,
however, that serum thyroid hormone and thyroid stimulating
hormone concentrations cannot be used with any degree of con-
fidence to classify patients as receiving satisfactory, insufficient, or
excessive amounts of thyroxine replacement. There is little dif-
ference between the ability of concentrations of total and analogue
free thyroxine to detect over-replacement; the poor diagnostic
sensitivity and high false positive rate associated with such measure-
ments render them virtually useless in clinical practice. Concentra-
tions of total triiodothyronine, analogue free triiodothyronine, and
thyroid stimulating hormone are also incapable of satisfactorily
indicating over-replacement. The tests perform equally badly in
detecting under-replacement."


" We consider that biochemical tests of thyroid function are of
little, if any, value clinically in patients receiving thyroxine
replacement. Most patients are rendered euthyroid by a daily dose
of 100 or 150 mcg of thyroxine. Further adjustments to the dose
should be made according to the patient's clinical response."


So the first order of business for you I suspect is to find a good thyroid doctor that will treat you clinically by testing and adjusting FT3 and FT4 levels with medication adequate to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not test results.  

Sorry if I overloaded here, but this subject area really hits my hot button.  Best to you.



Avatar universal
thanks, don't worry about overloading me! I'm very much a geek and love information :) the problem I have is that the only consitent Dr I have is my GP, and he free'ly admits to not know that much about thyroids..... he refered me to and endo clinic somtime back and every time I went there I got a different endo Dr with different ideas. one Dr said she'd be happy for me to try a synthetic t3 ontop of my levo, so she wrote to my GP and left it to him to presribe, he didn't really understand so we were working in the dark, he gave me 25mcg of liothyronine plus an increase in my levo', which needless to say sent me hyper (felt great for about for about 1.5weeks!), then my dr got worried and axed the t3......... I went to the endo clinic and saw a different dr, they told me i was fine as my levels were in the normal range....... few months later felt particularly bad and went back to the endo clinic, saw yet another dr who said I should increase levo' until I felt better 'as long as TSH is detectable'. I've sort of done that but still don't feel right.... he also gave me clinical stregnth vitamin d (10,000iu) as I said I felt run down especially in the winter...............

so in short I feel like my thyroid has been treated by a couple of different textbooks and not really by a Dr...... what i really need is a good endo who' constistent, its a very crap system where they run specialist clinic's but you never get a consistent theoretical approach, its almost like none of the theories these dr's have had have been given a chance....... personally I thought the initial endo who told me to use t3 as well was onto somthing but she wasn't there to help me manage it... when I first took a t3 tablet I felt like sombody had flicked a switch, i think i said to my wife somthing like "now i remember whats its like to feel well"......

anyway.... are you based in the uk?? I need an english Dr!

cheers, O
Avatar universal
I'm in the US.  I am fully aware of the difficulty with the NHS, in even getting tested for FT3, much less getting T3 meds.  I do have a couple of names of doctors in the UK, that were recommended by members here.  Where are you located?
215461 tn?1331866365
I have done some exploration on the mental health of thyroid disease.  I have hashimoto's and was working on my master's in counseling until I recently switched to health psychology.  I have a huge interest on the mind in connection with the body and it's processes.  My TSH has been all over the board in the last 6 months with one change so drastic that it went .0001 to 26 in 6 weeks.  In that time I started having panic attacks.  I have never had a panic attack in my life before this happened.  Now I cannot stop them,or even live my life normally.  I am 31 so this is now depressing.  I went to a therapist and she told me that she believes my problems are completely medical, but my doctors keep telling me its all in my head.  I am not going to just give up and let my life end because the doctors do not know how to help me.  Anyway, these are some articles I found that are pretty good dealing with the mental aspects of it.  I hope things get better for you.

Danielle

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1308833/

http://www.drrichardhall.com/anxiety.htm

http://www.bellaonline.com/articles/art52285.asp
Avatar universal
thanks for the replies guys,

gimel,I'm in the south west, near exeter but bristol and plymouth arn't that far, so anyone in the south west is accessable to me,

cheers, o
Avatar universal
Unfortunately the closest name I have to offer you is in London.  If that's of any interest, then I'll be glad to send the info by Private Message.  
Avatar universal
Hi Ozzy,

I live in the UK and have found the names of a couple of doctors who are sympathetic to what Gimel was talking about, i.e. they do not put much faith based in TSH values but rather treat based on the symptoms their patient exhibits.  I'll PM you the information.  There are also some really great groups that I've recently found.  You have to sign up for them with a Yahoo! account but there is some good information there.  Gimel, this might be of interest to you too!  

Samantha
Avatar universal
many thanks,

o x
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