Diagnosed 10 years ago with hypothroidism and given levothyroxine. At that time I had no idea what Hashimoto's and antibodies were. However, about 4-5 years ago I had a major slump with additional symptons, chronic fatigue, tingly legs and toes etc. About 2 years ago I had a full blood profile done privately and my antibodies were in the horrendous region of about 1,100. My doctor was totally unconcerned but after TSH test agreed to raise my levo.
I understand that my antibodies will eventually destroy my thyroid but I wonder, without a further antibody test, if I would have anyway of knowing this. Is the slump significant, i.e. were my antibodies having their final meal.
Also just briefly, if this does happen, would the original medication still work or would it need adjustment in view of the lack of a functioning thyroid.
Hope this all makes sense and thank you in advance.
I was diagnosed with hashimotos in 2009, my antibodies were 915 at the time I think but have never been tested since. What I can tell you is that my endo told me very recently that it takes roughly 3 years for your thyroid to be fully destroyed after diagnosis.
I am sure lots of people with more knowledge will be able to help with your other questions but in my opinion if you still have symptoms then your medication needs adjusting regardless of your TSH result.
Good luck
Ali x
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Thank you Ali, thats interesting to know. It would have been useful if I had known whether I had antibodies 10 years ago but even if you start from 2 years ago, the thyroid would seem prettty well on its way to useless.
I don't think it is any less useful than it was already. That is, there are many questions over the usefulness of TSH testing, but not having a functioning thyroid does not appear to be an issue in itself.
TSH is produced by the pituitary in response to the amounts of thyroid hormone in the blood and the amount of TRH received from the hypothalamus. If your TSH were, say, 1.0 when you were perfectly fine a number of years ago, then it would not be unreasonable to expect it to be there when adequately treated. (Some imperfections in the process mean that you would probably need TSH to be a bit lower than 1.0.)
I do not know of any other way in which the thyroid influences the pituitary - but I would not rule out the possibility.
Thank you Rod, very useful. What is TRH by the way (bear with me I am getting there). It has always been in my mind that if we were all tested as standard when we were fit and well, it would help knowing what your own personal level was. I have a blood test today and if it comes back near 1.0 I think my doctor is going to have a fit. It was 4.87 in February which he considers okay.
Now, I did a blog about 2 days ago asking what the pituitary responded to, i.e. T4, T3 or both etc. I had some really good responses but I was a little out of my depth with current brain fog but Vajra had said "Most T3 is converted from T4 with the possibility of 10-20% produced directly from the thyroid". So I wondered if I have no thyroid function, would my medication (T4 only) be inadequate and that I could do with some T3.
This is v disconcerting;i mean i didnt know that it takes as little as 2/3 yrs for antibodies to completely destroy ur thyroid.But would that be from the time that u r actually diagnosed as hypothyroid or from the time that u were tested as hav high anti-bodies(even if tsh is 'normal')?i hav had v high antibodies for many years(about 7 /8yrs)and have never been on medication as my tsh has almost always been within range(only just,sometimes).can anyone tell me?
I don't think consultants know what they are talking about! Mine told me when diagnosed 18 months ago that it might take up to 2 years for my thyroid to be destroyed with Hashi's!
Pardon my popping up again Jan, i'd also appreciate hearing Rod's view on the peripheral conversion topic.
My own experience suggests that immune issues don't necessarily shut down the thyroid - at least not quickly. Despite formally undiagnosed but seemingly longstanding auto immune thyroid disease (which only came to light in the path report after a thyroidectomy - but the symptoms were around for 10 - 15 years) my thyroid was producing significant quantities of hormone right to the end.
In that blood T4 and TSH levels tested 'normal' all the way. I was never diagnosed as hypothyroid - despite repeated insistence to more than one doctor that my symptoms suggested this. My T3 levels when tested were lowish, and on occasion very low - but it was only tested occasionally, and little account was taken of it.
I certainly experienced a sharp worsening of hypo symtoms post TT despite having been started immediately on T4. i.e. the diseased thyroid had definitely been doing a better job than the T4 which was prescribed to replace it.
I had been very hypo even pre-TT, but it seems likely that my issue was with conversion and/or use of the hormone rather than non-production by the thyroid.
Pardon too my being less than definitive on the topic of whether peripheral conversion of T4 to T3 fully taking up the slack post total thyroidectomy. That's on whether T4 alone works for most.
It's well known (or at least widely reported) that the thyroid directly produces a proportion of the T3 we require, but i didn't feel able to take a firm position on the effectiveness of conversion issue because there's so many views about.
The T4/TSH replacement protocol (T4 alone) is regarded by many was the norm, but some of us don't do at all well on it.
My personal experience is certainly that as of now (eight years post TT) i still need to take T3 to function.
That doesn't necessarily prove much in terms of how others having a TT should be replaced however, in that it's possible i have issues to do with conversion that others don't.
What i was driving at though is that there seems to be more and more research surfacing to suggest that this is by no means unusual...
Thank you Ian, you can pop up any time you want, its so nice of you to take the time to answer my question.
That certainly gives me a much better idea of how things work viz-a-viz T3 and I am now rather inclined to ask my doctor for a trial of T3 to see what happens. I do understand that its not a "one-fits-all" solution, but I now know that if this doesn't work my problems may stem from a conversion problem and I could try another combination or NDT.
You have given me some hope and a plan to try and turn this thyroid nightmare into a thyroid success. However, I feel I have a few miles to go yet.
I guess if you put together all of the inputs/perspectives touched upon it's fairly clear that simple unconditional answers are pretty rare where thyroid replacement is concerned - there's such scope for variation between individuals and the situations they find themselves in.
That's before the need to fine tune the regime to deliver real well being rears its head.
It all tends to point very clearly to the need for a holistic, symptom led and where necessary trial based approach to sorting replacement and the associated resolution of the loss of normal homestasis out.
It's probably no wonder in light of this that the stock one size fits all T4/TSH based replacement protocol often doesn't deliver normality for many...
Thank you Ian, yes I have had some really good informaton and advice from everyone on both posts which I will go back to several times more. My problem has been that I believed everything I was told by my GP (I am from the old school when GP's were virtual gods) but desperation drove me to do my own research - and what a revelation that has been. Knowledge is power.
One day hopefully, everyone will be treated as individuals with unique needs and the NHS will respond. If they want to cut down on GP visits and cost of unnecessary and ineffective medication, this would be one area to start.
I have read in 'thyroid.for dummies' book that it doesnt matter how high ur anti-bodies are;i mean that higher numbers does not correlate w having a worse case of auto immune thyroiditis.all that counts is that it is above normal.
thank you Cloud, thats interesting and reassuring. Of course we all think of high numbers as being much worse, perhaps thats why my doctor took no notice of what I thought was horrendous. It seems such a long road trying to figure out what is going on but perhaps there is life yet still in the thyroid!!
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