scared and looking for advice

[yallolorry]

I started on thyroxine 3 months ago and have just been put on a slightly higher dose as I am still symptomatic, I've been signed off work for a coupe of weeks and at home feeling quite sorry for myself. I'm told I have sub clinical hyporhyroidism. Hypothyroidism runs in my family - my (considerably) older brother and sister have been on medication for 20+ years and it seems to work for them so I'm optimistic that when my dose gets sorted I will feel good again.

but I'm really scared. my mum died when she was my age, 42, she had some kind of autoimmune disease but her records were no longer available by the time i was old enough to go and ask about them so I'll never know exactly what was wrong with her. she had a series of strokes over a 2 year period before she died and apparently before the first of those her immune system just seemed to pack up and she had all sorts of colds, asthma, etc...there's no one I can ask for more info about what happened to her from really.

chances are what's wrong with me is nothing to do with what was wrong with her but I am trying to educate myself to understand as much as possible about the known links between different autoimmune illnesses  and what I can do to take care of myself.

my thyroid antibodies test came back showing a reading of 2548 but I have no idea what this means and can't find any explanation of antibody readings anywhere on the internet. i will go back to my doctor in a couple of weeks but in the meantime would be grateful for any advice or insight anyone on here may have.

thanks

[gimel]

What specific test showed a result of 2548?  What other thyroid tests were done and would you please post the results and their reference ranges, from the lab report?  If you don't have the info, I'd make a habit of getting a copy, future reference.  The doctor is required to give you a copy upon your request.  Has the doctor given you a cause for you being hypo?

[yallolorry]

hi gimel, thanks for picking up on my thread. It means a lot to know someone is out there and cares enough to message me back.

All I know about the thyroid antibodies test which was done in August this year is that it was for thyroid antibodies and was done after an initial TSH and T4 test that showed sub clinical hyprhyroidism a couple of weeks before that.

for some reason the results of the initial TSH and T4 tests were not on my doctor's system when I saw her this week, I will get them from her next time I go. She did a follow up TSH and T4 test last week with the following results:
TSH: 4.71 (normal range = .27 - 4.2)
T4: 16.8 (normal range = 12 - 22)

she advised that though my T4 is within the "normal range" it must not be normal for me as the TSH reading is a bit high.

I will definately be making a habit of getting and keeping all results in future. I hadn't expected the first tests to be positive as I'd been tested in the past and not shown any abnormalities so was a bit blase about it all. Now though I'm taking it much more seriously.

the doctor hasn't given me a cause apart from that it clearly runs in my family as both my sister and brother have it...I've seen 3 different docs at my practice so far, all have been nice and supportive and seemingly fairly knowledgeable and I know they consulted with colleagues before confirming the diagnosis. I plan to stick with the latest doc that I've seen twice now for consistency going forward.

what do you think?

[gimel]

There's a number of things to consider.  Have you noticed any symptoms that relate to being hypo?  Second, I suggest that in the future you always insist on being tested for the actual, biologically active thyroid hormones, which are free T3 and free T4.  FT3 and FT4 are the portion of thyroid hormone that is not bound up with protein (and therefore inactive).  This is quite different from total T3 and total T4, which are somewhat obsolete tests that don't really show what you need to know. FT3 is the most important because it is four times as potent as FT4 and FT3 also correlates best with hypo symptoms.

TSH is a pituitary hormone that is affected by many variables and it does not correlate very well at all with hypo symptoms.   TSH is inadequate to use as a diagnostic.  At best it is an indicator to be considered along with more important indicators, such as your symptoms and also the levels of FT3 and FT4.  In my opinion the very best way to treat a thyroid patient is to test and adjust FT3 and FT4 with whatever meds are required to alleviate symptoms, without being constrained by TSH.

I think you might be interested in an email that I sent to the Amer. Thyroid Assn. some months ago.  In fact I sent it twice, with no response.  LOL





After having gone through years of not being treated for hypothyroidism, because my TSH was 4.97 and thus "normal", I was very pleased to note that the AACE had finally recognized that the range was incorrectly determined.  After removing some suspect hypo patients' data, and recalculating the range, they recommended  it be lowered and narrowed to .3-3.0.  Six years after this recommendation, why is it that most labs and doctors still do not recognize the change and still use the old range?  Since doctors also over-rely on TSH as the gold standard for thyroid testing, multitudes of hypo patients are still being told they are "normal" and do not get treated.  Is the ATA doing anything to encourage the medical community to change this practice?   If so, why is it taking so long?

My second concern is that doctors predominantly rely on TSH in determining a patient's thyroid status.  Why is this, since TSH is a pituitary hormone that is affected by so many variables, including even the time of day when tested?  Why not promote more widespread use of the actual thyroid hormones that are biologically active (FT3 and FT4) and that largely regulate metabolism and many other body functions?  From studies I have seen and much personal experience, TSH does not even correlate very well at all  with  hypo symptoms.  The test that has been shown to correlate best with hypo symptoms is free T3.  Yet there are very few doctors that order a FT3 test as a matter of course, and some that refuse to order one at all.

When FT3 and FT4 are tested,  the ranges are so broad that patients with overt hypo symptoms will usually still fall in the lower end of the current range.   As a result they are also told they are "normal" and receive no treatment.  Why haven"t the reference ranges for FT3 and FT4 been corrected like TSH, to exclude suspect hypo patients?  If this were done, these ranges would likewise be raised and narrowed,  comparable to the new range for TSH.  I'm sure that some would say that the range is just a reference range, that as you approach the lower end of the range, that the probability of being hypo goes up and that in those cases, doctors look further to determine if medication is advisable.  I agree that this should be the case but I assure you it isn't. Labs and doctors interpret results within the reference range as "normal" and don't want to go any further.   As a result of all this  above  misunderstanding and misapplication, millions of patients go untreated and remain miserable with their hypo symptoms.

Is the ATA doing anything to raise the awareness  of these problems among the medical community so that we hypo patients can look forward to some positive changes?  If you are not, then I cannot imagine any other organization that could do the work necessary to coordinate changing the awful mess that exists in the area of diagnosis and treatment of thyroid patients. Your response will be greatly appreciated.

[yallolorry]

hmmm, thanks v. much, how wonderful to have found someone who is so knowledgeable and prepared to share their knowledge - thank you.

I'm in the UK so our health system and some of the terms may be slightly different to what you have over there. It seems that here the main initial tests are THS and T4 then antibody testing. I hadn't heard about the FT3 and FT4 tests before, I will ask about those and do some more research into them. I haven't heard about a total T3 test before you mentioned it, perhaps if it's obsolete it's not something we do in the UK health service any more...

what do you think about antibody testing?


I have lots of symptoms, it's the symptoms plus my family history that my doctor has primarily based my diagnosis on.

Symptoms are primarily: tiredness, emotions running high, fuzzy headedness and tingling/pins and needles on my scalp, also my ankles were becoming a bit swollen although I am not overweight and I thought that was really weird and the doctor felt that seemed a strong indicator of hypothyroidism, combined with other symptoms and the family history.

I have also gained a bit of weight recently but it's difficult to know whether that's thyroid related or due to other factors, I lost a lot of weight last year when seeing a nutritionist (she diagnosed candida and I became very good for a while at avoiding sugar and white flour products so became streamline shaped pretty quickly under her regime) and living apart from my husband (so stressed about that too I guess) then put some of it back on (back with my husband and loved up again, eating puddings etc, lol!) but still weigh less than I did before and am normal for my height. I was only a little overweight at the start.

my neck seems a bit swollen where the thyroid gland is too, I have bags under my eyes.

Also my stomach is very swollen, no idea if this is a thyroid thing or more diet related, have been eating a lot of sweet stuff for energy boosts recently to stop myself keeling over and/or feeling too miserable (lol!) and that makes my stomach bloated.

It seems like pretty poor show the ATA have not responded to your mails - have you had any other correspondence with them?

[yallolorry]

oh and I ache!

[gimel]

You may run into some problems getting treated adequately to relieve your symptoms, since you are in the UK.  From what we've heard from some members of the Forum that were in the UK, the doctors are much more rigid about following the guidelines and not recognizing the reference ranges as they are now, to be only guidelines, within which to adjust levels as necessary to relieve symptoms.  

We've had some of your compatriots in Uk report that the doctors were quite adamant about it and refused to even test for FT3 and FT4, so you'll have to insist on it.  There was even one doctor that was at Oxford I believe that stated quite arrogantly that if patients TSH and T4 fell within the reference ranges they needed nothing further and that any remaining symptoms were "somatoform disorders".   He advocated that doctors should stand firm in this position.  I also read that there were some people petitioning their gov. reps to force the NHS to change this policy.  

So I hope you have better luck finding a doctor that will treat your symptoms by testing and adjusting FT3 and FT4.  If you do there's such a demand that you could probably sell the doctors name to lots of others there that need the same treatment.   LOL

[yallolorry]

thanks for all of that....so are you saying that the antibody test I had is meaningless, as you haven't referred to it at all?

I will ask for the FT3 and FT4 tests when I next see my doctor and I have every confidence in them as they seem to be taking a fairly holistic approach so far. I guess doctors everywhere are individuals and some are better than others. will let you how I get on!

but right now I'm trying to see if anyone knows anything about the significance of thyroid antibodies, do you have anything to say on that by any chance?

[gimel]

Likely the antibodies test result showed that you have Hashimoto's Thyroiditis.  With Hashi's your autoimmune system produces antibodies that attack the thyroid glands until they are destroyed.  During this period, which can last for a while, your glands will become somewhat erratic in thyroid output.  Taking medication as you are has been shown to be helpful in minimizing the effect of antibodies and helping you through becoming hypo.

This is a good article about this subject, that was found by one of our members named Tamra.

http://thyroid.about.com/od/hypothyroidismhashimotos/a/preventative.htm

[yallolorry]

thanks, gosh it's scary stuff isn't it.

:(

[gimel]

As an indication of the difficulty you might have finding that good thyroid doctor in the UK, I thought you might enjoy reading this article, so I tracked it down.  

http://thyroid.about.com/od/newscontroversies/a/weetman.htm

Best of luck.  Let us know how things progress.

[baz5]

Hi gimel!  Sorry your having a tough time.  It does sound like you have Hashimotos though and your TSH could stand to be a bit lower than it is now.
Im having a really tough time with my own Doctor myself.  Getting a new one asap!

[acker]

hey i've developed bloated stomach too. bit unpleasant. i think this has then contributed to lower backache too - never had either before. i'm recently hypo.
if you can reduce the sweets, it''l cause less strain on your system, if you don't mind me saying. i know it gives energy temporarily (and is tasty) but i think it taxes the system which is more to deal with later. i guess i'm saying this because i have had fatigue syndrome as well, and i think they're related; the best thing to do is to rest when tired. 0.02c. hang in there
acker

[yallolorry]

thanks for that article Gimel. It was very interesting!

Like I've been saying since the start of this thread my doctors have been great so far. The three doctors at my local practice who I've seen since over the last few months have all been completely different from Dr Weedon, I'm very glad to say! They seem to be taking a holistic and caring approach, thus far.

I'll let you know how I get on when I ask them about FT3 and FT4 testing. the TRH Stimulation test Mary Shomon mentions and Armour! I'm learning lots about the controversy hypothyroid tysting and treatment, I wonder how much of what I've learned my GP will even be aware of - will let you know! I don't know how much of this stuff requires a specialist.

I've always taken care to ensure the medical practioners I choose to deal with are good ones and I have never found such people difficult to find, my mother died prematurely probably because of crappy doctoring, so now if someone doesn't listen or seem competent, I walk away, simple.

I guess I'm one of those postmodern patients, I focus on taking care of myself, listening and seeking to participate in an adult to adult dialogue that seeks potential answers and worthwhile options. I never had a very productive conversation with anyone if one or both sides were trying to turn it into a fight.

Mary Shomon seems to have a very taboid-y and aggressive style. I've come across a lot from her online and am not sure I want to take everything she says as gospel. I'm new to the subject and have much to learn but her tone and seeming self promotion really puts me off.

Of course I get the concerns around big business interests in the health industry, that is seriously scary stuff. However I also firmly believe that there are lots of doctors who are also aware of such concerns and care very much about patient health, recognise that they dont' have all the answers and want to listen and learn from patients. the world is changing, that old skool autocratic style and antagonistic response seems v. out of date and in my experience is increasingly less common than it used to be.

I'm tempted to try and dig out Weedon's original article now as I wonder how fair Shomon's interpretation of it actually was given his brief response to her piece, have you read the original by any chance?

I hope we can keep in touch. I feel I'm learning a lot in dialogue with you and am really grateful for your time.

Still got to get my head round what this Hashimotos thing will mean. Am going to talk to my big sis and brother and find out if that's what they've got. I think I asked them before and the answer was no. There's so much to try and understand. thanks for all your pointers.

[yallolorry]

thank you acker - i know you're right about the sweets! I felt so much better when I was off them. I must try harder to resist. I also have had fatigue syndrome and am convinced it's all connected. do you take any supplements?

I see a nutritionist/homeopath/kinesiologist (still, although I'm not following her avoid sugar advice very well at the moment) and she has me on a load of stuff I'm convinced helps. I'm all for combining traditional with complementary therapy, have you tried anything like that?

[acker]

my dr is a whizz! thankgodthankgodthankgod. my supplement list is (every day or every second day): multivitamin, magnesium, selenium, bit of calcium, zinc, vit. c, vit. d,
also rice-based protein powder (go by how you feel). protein - boiled egg - included in breakfast, and protein at lunch.
no coffee (no fun), weak tea, no dairy milk or cheese, can have butter, no iodised salt, no soy, no seaweed products. reduced wheat foods, reduced sugary stuff. it's been surprisingly bearable. got any tips on what has worked for you?
i also experience the swelled feeling in the throat area - nasty.
another thing i found was i couldn't stand the wind - not even the slightest breeze. just sensitive to anything. noises, fumes, bright light.
i'm on no medication yet cause i was diagnosed hyper initially and now seeming to settle into hashimoto's. i'm learning to listen to my body. i see you have a holistic approach, so i will say that my auto-immune condition is due to inner conflict - arguing with myself, not trusting myself, ignoring my body when it's screaming something else... that sort of thing. i understand your case is strongly genetic; mine is stress-induced. still, who of us wouldn't benefit from a little peace and okayness within ourselves? before this, i've never had a sick day in my life. i do a bit of stretching and small walks to maintain range of movement. the key for me is to listen to my body and trust its signals. i'm learning to just take things easy and not be so beastly to myself. i bet if we had a survey here, most fatigue/ thyroid individuals here would tick 'yes' to any "active/ harsh-on-self/ high-energy/ pushy-on-self/ over-working" etc kind of category. huh!
recently i have had poor concentration - mind is rushing and a bit anxious - but before this i had also found meditating and breathing routines were helpful!
towards wellness..!
acker

[gimel]

Here is a copy of the original text of Dr. Weetman.  What do you think of his assertions?

[gimel]

Sorry, forgot the link.

http://www.medscape.com/viewarticle/524955

[gimel]

Well, now I found that you can't access that link directly.  So just Google  "Whose thyroid replacement is it anyway?.  That will show the article as the first entry I think.