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Latest update

Just an update of where I am now after seeing a Rheumatologist and new endo. So a lengthy appointment with the Rheumy who has dx'd me with fibromyalgia uurrgh. Asked me all about my hashi's and symptoms and told me I need to get it sorted out (ya think!). Also told me my endo should have been testing my calcium and vit D, I have never had this done. Well now I have a long list of blood tests to do and a script for endep, low dose 5 mg. Told her I was seeing a new endo and she was happy for the results to go to him. So off I trot to the new endo (high hopes in hand) but came out a bit squashed although found him much better than my first. An hour and half later I come out of his office a bit deflated but at least with an increase in my meds..now up to 100mcg. Hopefully this will help but he too says my symptoms are not thyroid related...yet. I have hashi's so eventually I will become hypo but says as yet am just sub clinical and that fibromyalgia mimics thyroid symptoms. Hmpf! Well yes I guess they do reading up on it, but still. He too has given me a long list of blood test to do in two months time.
I have also started on selenium in a bid to help the feeling in my throat, oh he says, you've been looking on the internet! He is not convinced of it's benefits but wants me to continue on it until my next visit. Ok.
He also told me that the fullness/lumpy feeling in my throat was down to something else, possibly the reflux I get and something else I can't remember. Crap, was hoping he would say an increase in my meds would help it. He suggested possibly seeing an ENT specialist, no thanks got 3 on the go now don't need a fourth! (am also seeing a hip surgeon next year)
So there we have it, now is the waiting game...again. Should be used to it by now. Good news tho is that my US came back with no change in size of nodule or thyroid, but is harder to distinguish from the fleshy gland. Nice.
Sorry for the long post, just thought I would share my latest experiences. I would post my latest results but have left them at work! oops. I do remember that my FT3 was at the low end of the range and FT4 in the middle ish.
Will see if the increase in meds helps at all, will be making notes of how I feel in the next two months to take with me. If I feel any better (man I hope I do) then maybe it is my thyroid as I have thought all along.
Good luck to you all
G
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Avatar universal
So the Endo said your symptoms are not thyroid related, even though your FT3 was at the low end of the range?  Too bad he doesn't recognize that FT3 is the most important thyroid hormone, since studies have shown that it correlates best with hypo symptoms and FT4 and TSH did not correlate.   Also you should be aware that many members report that symptom relief for them required that FT3 was adjusted into the upper part of its range and FT4 adjusted to at least midpoint of its range.   We frequently hear from members that their body is not converting their T4 med to T3 adequately, so their T3 levels are too low and need to be supplemented with a T3 med, in addition to the T4 med.  Just increasing your T4 meds are not likely to do it for you.

In my opinion the best way to treat a thyroid patient is to test and adjust levels of FT3 and FT4 with meds as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not TSH level.  If your doctor is not going to be willing to treat you clinically (for symptoms) in this manner, then ultimately you will need to find a good thyroid doctor that will do so.  
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Avatar universal
That TSH range is apparently halfway between the old and new one recommended by AACE.  I wouldn't pay a whole lot of attention to the TSH now that you are on thyroid meds.  Many members report that while taking significant dosages of meds their TSH is suppressed.  For example, my TSH has been around .05 for over 25 years and I still had lingering hypo symptoms until learning about the importance of FT3 and adding a source of T3 to my meds to get my FT3 into the upper part of the range, enough to relieve symptoms.  After that I felt best ever.  

The reason we always talk about reference ranges is that results vary from lab to lab and accordingly they use somewhat different ranges.  It is most important to know where your test result falls within the range.   Also, the range I used above is expressed in Pg/ml.  I think you will find that your range is expressed in Pmol/L.  Also, I'm positive that your FT3 range has never been corrected either.  If it were corrected like TSH was, I'd estimate that your FT3 range wold be more like the upper 60% of that range.  That's why many people only get symptom relief when their FT3 is increased into the upper part of its range and FT4 to at least midpoint of its range.  I think your FT3 is way too low.  It could be because your T4 meds are still too low, or your body is not converting T4 to T3 very efficiently.  If it is the latter, then you will likely need a source of T3 added to your meds.
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Avatar universal
Gimel you said
'I would roughly estimate that if the data base for FT3 were purged of suspect hypo patients like was done for TSH, that the range would change from 2.3 - 4.2 up to more like 3.2 - 4.3.'

The ref ranges here for FT3 are 3.5 - 6.5. My FT3 is at 3.6 hence the increase in meds.
Does this mean that the FT3 ranges over here have been altered?
Also the TSH ref ranges are at 0.50 - 4.00. I am currently at 2.71.
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649848 tn?1534633700
COMMUNITY LEADER
Just wanted to clarify that not all T3 med comes from pigs.  Cytomel is a synthetic T3 med, which a lot of us are currently on. I, personally, am on the generic form of cytomel.

The thyroid hormones that come from pigs contain "both" T4 and T3, not just T3.

guiles90 -- you said:  "One good thing with this new endo is that a colleague of his (another endo) has been dx'd hypo herself and has found the exact same thing as you say, that to feel relief from symptoms she has to be in a certain point in the ranges".

Go to the endo who is hypo; you will probably get much better treatment.  
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Avatar universal
I happened to think of another thing to throw at your doctor.  Over 8 years ago the Amer. Assn. of Clinical Endocrinologists recommended a huge change in the ref. range for TSH.  This change was necessitated by their recognizing that there were far more hypo patients than their old range predicted.  When they went back and carefully purged from their TSH data base patients that were suspect for being hypothyroid,and recalculated the ref. range. it went from .5 - 5.0 down to .3 - 3.04.  When I saw posts from so many patients with FT3 levels that were low in the range, yet they still suffered from hypo symptoms (including myself), I began to wonder why.  

From what I have learned since, the ranges for FT3 and FT4 would have been determined in the same way as the old range for TSH, and they have never been corrected as was done for TSH.  From having a lot of training in statistical analysis, I would roughly estimate that if the data base for FT3 were purged of suspect hypo patients like was done for TSH, that the range would change from 2.3 - 4.2 up to more like 3.2 - 4.3.  So this is my explanation for why we hear from so many members with low-in-the-range FT3 levels and hypo symptoms.  I think it is why we hear so often of the successful relief of hypo symptoms by raising FT3 levels to the upper part of its current range.    

So if your doctor is aware of the 8 year old change in TSH ref. range, and the reason it was done, you might stimulate his thinking about FT3 by telling him this and asking him why the range for FT3 has never been corrected upward.  The alternative to range correction is,  instead of considering any test result within the range as being okay and not needing anything further, to consider the current range as a guideline within which to adjust FT3 as necessary to relieve symptoms.  Unfortunately, not enough doctors have yet come to this understanding.
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Avatar universal
If it might help your doctor accept that FT3 is the most important thyroid hormone and that it correlates best with symptoms, here is a link to a study that clearly shows this.  Patients subjectively rated themselves for 8 different hypo symptoms.  They were evaluated both before and after treatment.  Even with all the variability of subjective ratings for the symptoms, free T3 showed the best correlation by far, while researchers were unable to find any correlation with FT4 and TSH.  

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

This is only logical when you think about it.   FT3 is the biologically active thyroid hormone that largely regulates metabolism and many other body functions.  The primary function of T4 is as a storage hormone that is available to be converted to T3 in numerous places within the body.  And TSH is a hormone produced in the pituitary and it doesn't even correlate very well with FT4, and not at all with FT3 or symptoms.  If you want to see just how poorly TSH correlates with anything, have a look at this link, especially fig. 6.  Maybe copies of these two links might have a good response from your doctor.




http://optics.merck.de/servlet/PB/show/1809250/Thyroid-Inter-3-2008.pdf  
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Avatar universal
Yes I agree it is too bad he doesn't recognise FT3 as being the most important hormone. When he looked at my labs I pre-empted him by saying 'yes i know they are in range but...' I then pointed out that my FT3 was at the very low end of the range. If I remember correctly it was only a point something or so above the minimum. I may yet stand to corrected when I look at them! I think this is why he upped my dose. What makes things worse is that he (supposedly) focusses a lot on thyroid diseases so I really don't understand his thinking. I feel being dx'd with fibro as a cop out for their lack of understanding with thyroid disease. They have the same if not very similar symptoms. It is quite difficult here in OZ to find someone who will treat for symptoms and as far as I am aware do not or will not prescribe dessicated hormone. One good thing with this new endo is that a colleague of his (another endo) has been dx'd hypo herself and has found the exact same thing as you say, that to feel relief from symptoms she has to be in a certain point in the ranges. He admitted this opened his eyes and got him thinking..hoorah! maybe some breakthrough there will have to wait and see... or perhaps I should see her!!!
I will however keep pushing, I will not be made to feel sick for the rest of my life.
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Avatar universal
I think most doctors just treat the TSH levels not individually the hormones. Drugs like Synthroid contain a synthetic version of the t4 hormone that breaks down into t3 however this drug takes weeks before our body breaks it down into the more powerful hormone. T3 is five times more powerful of a hormone than t4.  T3 drugs come from pigs thyroid so it is not a synthetic form and our body does not wait to break it down, therefore it works must faster. I think these drug companies did quite well into selling their Synthroid synthetic to all the doctors that treat hypothyroidism. It seems more like a money thing than a patient thing.  Why make someone wait 6 weeks to feel better.  Maybe doctor's find it too complicated to prescribe the t3 as compared to the t4 drug.  In either case, I intend to stay active and follow up on my thyroid help.  
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