Iv just recieved a copy of the letter from my endo who is till insisting that i have only ever have borderline hypothyroidism. My bloods also showed elevated iga, im not sure of the significance of this..if any.
Had telephone appointment with my Gp this morning to discuss endo meeting. Endo wanted me to come off thyroid meds which i refused so he has lowered my dose. My GP was no use in this matter and said that as people get older they change and that i might not need the meds.
Moving forward they are now starting me on steroids next week as endo susspects Polymyalgia.
Confused.....
Christine
Written by
yorkshiregirl44
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Please get a print-out of your latest blood tests. When were you diagnosed and what dose of medication do you take. Is it levothyroxine? Lowering your dose isn't the way to go. If you've had your blood test recently ask your GP to take another and ask for a Free T3 test (probably wont but we do need T3 in our bloodstream as that's the Active hormone required for us to feel well.
If you can get another blood test it is best to have the earliest possible appointment and fast (you can drink water). Leave about 24 hours between your last dose of levo and the blood test and take it afterwards. That might keep your TSH high enough so that they wont adjust your dose.
I was diagnosed in 2010, T4 10.2,TSH 13.5 and positive for antibodies at 1000 plus. Been searching for latest results which i thought id filed away...i think my TSH was above 6 and my T4 was low. I was taking 100 of levo and now its been reduced to 75, alough endo wants me to come off it. I cant find any recent B12, folate or ferritin. My Vid is low. Im having bloods done again in next few days, they are only testing TSH, T4 and T3.
Neither do I. It sounds quite strange considering you've positive antibodies. A TSH above 2 when you're on treatment sounds too high to me.
Does your GP know more than the Endo as I would be loathe to come off any medication once diagnosed and besides the antibodies must make you eventually hypo.
Remember to fast and have the earliest appointment and don't take levo before it. Allow about 24 hours between your last dose and the test.
When you get your copy of the blood tests put all of the above on a new question plus your new results.
Hopefully you'll get some more responses unless there's a lot of questions that's pushed you down the list a bit.
I believe that some doctors don't take antibodies very seriously but the fact that your already on levo is a big puzzle to me. I would be extremely reluctant at the moment to reduce/stop my meds unless it could be proven to me that I don't need them. This is an excerpt from Dr Toft and I think it's awful if things aren't explained to your in plain language why the Endo has made this decision. Sometimes I wonder if they really know what they're supposed to:-
Excerpt:
2. I often see patients who have an elevated TSH but normal T4. How should I be managing them?
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat the thyroid function tests in two or three months in case the abnormality represents a resolving thyroiditis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive – indicative of underlying autoimmune thyroid disease – the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow-up.
Treatment should be started with levothyroxine in a dose sufficient to restore serum TSH to the lower part of its reference range. Levothyroxine in a dose of 75-100µg daily will usually be enough.
If there are no thyroid peroxidase antibodies, levothyroxine should not be started unless serum TSH is consistently greater than 10mU/l. A serum TSH of less than 10mU/l in the absence of antithyroid peroxidase antibodies may simply be that patient’s normal TSH concentration."
As the Endo responded to your question:-
"When i said to the endo that having antibodies which would make me hypo like i was and still am his reply was - who said? Just email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse Online article and highlight the question and say Dear Mr ? you queried who indicated that antibodies should be treated with levothyroxine, I enclose an article by the ex President of the BTA and highlight the appropriate answer.
Christine, ditch the endo. If he doesn't know that positive autoimmune thyroid disease eventually causes, hypothyroidism, that TSH >10 when originally diagnosed is overtly hypothyroid, and TSH 6 on 100mcg means you are undermedicated, he's never going to be any use to you. For some peculiar reason he appears to need to see what your TSH and FT4 are off meds. Even a numbskull should be able to predict FT4 will drop and TSH rise.
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New thyroid results and unsure of next steps
Is this all I have to look forward to
A year down the line and no further forward 
One year on! No further forward 
No other way to ask this: anyone else find Levo makes them dance the green apple two-step?
