Thyroid UK
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Tsh assays false positives. ?stopping treatment!!

I saw endo, she said my symptoms don't match my TSH and that my Tsh maybe false due to assay, said she will resend to another lab as antibodies can affect results with standard assay!

Said reduce my dose to 50mcg, she said looks like gp is treating a number not a patient.... I'm confused as she said may take me off it all together, I was so rough with TSH at 30 and am scared I'll end up back there.

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How very odd! Were you taking any supplements before the tests which she's having re-evaluated? See, e.g., healthunlocked.com/thyroidu...

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No not at all! Scared to reduce dose! I was so rough before

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I would refuse to reduce dose until after the new test results are through, and prove one way or the other what your situation really is.

Your GP may be treating you as a number (but then 99% of them do with thyroid diseases). But your endo seems to be treating you with the aid of a crystal ball.

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I saw an endocrinologist privately and he suggested increased thyroxine all be it slow but now she says let's see some people feel ok with TSH running on high side and as symptoms don't match let's see

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Having a TSH over 7 doesn't strike me as being either safe or healthy for anyone.

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I think that's good advice I'll pretend I didn't understand😊

She said go on hrt I think to much change at once I'll never know what's going on

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Have you ever paid for your own thyroid and nutrient testing?

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No always NHS

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The way you are being mucked about you might do better to pay for your own testing and treatment. But it is a lot of money, so I realise this may be impossible.

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We have recommended labs and one, Medichecks, do special offers every Thursday. I will give you a link and you'd need Free T4 and Free T3. Blue Horizon are also recommended. t

They are home pin-prick tests and make sure you are well hydrated a couple of days before you draw. This is an excerpt from following link:-

FT4 = FREE T4

Thyroid hormones not bound to proteins. FT4 lowers when the thyroid is struggling.

The approx. reference range for this test is 10 to 24

FT3 = FREE T3

T4 converts to T3 and is the only thyroid hormone actually used by the body's cells.

The approx. reference range for Free T3 is 4 to 8.3

We at Thyroid UK believe that you need to know your Free T3 level too because this will often show low if you are not converting, and high if you have blocked receptor cells. Even if you are converting, the body needs the extra T3 that a normal thyroid produces. There has been some research to show that people feel better on a mixture of Thyroxine (T4) and Triiodothyronine (T3). Effects of Thyroxine as Compared with Thyroxine plus Triiodothyronine in patients with hypothyroidism – The New England Journal of Medicine Feb.11, 99 Vol. 340. (Click here for this article).

With all of these tests, your results could be anywhere within the range and you would be classed as "normal". If you are at the very edge of the range, either at the bottom or at the top, you could be classed as "borderline". Neither you nor your doctor truly knows what your normal is, if you did not have a blood test done before you became ill. There are also particular reasons why the blood tests remain in the normal range. If you are not converting from T4 to T3 or if your cells are not taking up the T3 normally, your T4 levels and your TSH levels will still show as normal.

thyroiduk.org.uk/tuk/testin...

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Why HRT? Are your sex hormones low?

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At the time my thyroid started playing up my periods stopped and I've now not had periods for 2 years

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That happened to me when I was in my 30s and I was glad! About 5 years, I think, until I put on several extra stone. I wasn't offered HRT, just lots of pregnancy tests.

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So scary. It is worrying me that all of a sudden, what was a lifelong condition is suddenly being treated as if it was something that is going to go away? If you are UA you are UA? As 90% of UAT in UK caused by an autoimmune disease, Hashimoto's, that, untreated is only going to cause more irreparable thyroid damaged, it makes no sense at all to stop treatment. Are you getting your T3 levels tested? Have your antibodies been tested? Presumably if she is saying antibodies can affect results...yes...antibodies likely causing problem and nature of Hashi's is to flare up and dip...erratically! Good luck.

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I have high TPO antibodies 550 at present and she said that leaves you predisposed but you may not be there yet?

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She's talking complete and utter rot! Like most endos. I think dragging a few of them through the courts for negligence and incompetence might do them all good! Make a few examples. They are a liability and seem to be getting worse! I think they make it up as they go along!

I wouldn't take her advice on anything, if I were you, not even the time of day!

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I am about 65% better since diagnosis which probably correlates well with TSH range to be honest!!

I went to appointment with high hopes and am home confused completely by her suggestions to lower dose she said you could go down to 25mcg I said I'd rather try 50mcg first if I am to reduce!!

She said for some pts you just accept a high Tsh if they feel ok with it!!

I'm not going to let myself get depressed over it but I am sad that 2 different endocrinologists have such different views private one said increase nhs said let's try to get you off this as you don't fit the picture you should be overweight with slow pulse but your slim with fast pulse!

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I agree with greygoose and if you yourself are wary, go by your instinct.

This statement:

'try to get you off this as you don't fit the picture you should be overweight with slow pulse but your slim with fast pulse! '

informs me she doesn't know much and is taking an average hypo patient whose not on sufficient hormones or low FT3 and gains weight as an example.

I haven't gained weight but my pulse at times on levo was 150mcg and had umpteen ECGs and cardiologiest completely puzzled.

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OMG! She should be struck off! There's no obligation to be overweight. Lots of hypos lose weight, some just stay as they are. As for pulse, mines never been low. It is so ignorant to be so pendantic about symptoms. She really doesn't know what she's talking about. Ignore her. Take the advice of the other one.

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[grumble] My mother didn't fit the picture for the 'usual' gallbladder patient - she was slim, red-headed, and 50s, not the mantra of, "Fair, fat, and 40". Let's just say that her GP was so convinced that this mantra held true that her gallbladder was on the point of rupture (and she was already septic) when he finally diagnosed her. [/grumble]

People can be so blinded by beliefs in stereotypes that it genuinely prevents them from seeing what is in front of them.

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Great idea Grey Goose but where would the 'expert witness' be found!

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Ah, there's always a hitch. You'd need someone like Theirry Hertoghe, or Claude Dalle, But, would they be accepted. Things is, if no-one is ever able to try, we'll never know! For goodness sakes! There must be some top lawyers with thyroid problems, no?

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You would think so wouldn't you. Probably self treating as well! Wonder if you would have to declare it? Could it mean that they were biased and couldn't take the case. Kind to be some sort of loophole!

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I have no idea. I really wish I knew more about the law!

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I am hypo with high antibodies 550 she seemed very good but I am scared to take her advice

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Post your vitamin results

With Hashimoto's they are highly likely to be too low

Endo obviously knows sweet FA about Hashimoto's. Sadly far too common

Going strictly gluten free for at least 3-6 months to see if this helps - it does with about 80%

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

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In what way did she seem very good? Seriously cos I must have missed something? She said some people are fine with higher tsh? So do you feel fine?

Oh I'm going to lie down, can't take any more 'expert' Endo claptrap today, you really couldn't make it up :(

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😂 I guess I had high hopes, she was recommended and I thought maybe she's on to something here! Until I sat on the bus and thought well where does that leave me!!

I went for answers and left asking myself more questions🤗

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That's why we have to ask questions, read and take our own health it our own hands. We cannot struggle on when even the 'specialists' are not special or knowledgeable enough to know how best to treat the patients. Clinical symptoms should be priority and not the TSH.

thyroiduk.org.uk/tuk/about_...

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I think she is probably wrong and certainly didn't explain well enough why you should do what she said. I wouldn't trust anyone who couldn't explain her point of view to me in a logical, scientific manner.

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You will get better advice here.

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I agree completely

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One of the important reasons that FT4 and FT3 should be tested is to provide a "sanity check" on the each other. That is, TSH, FT4 and FT3 should form a coherent picture. If they do not, then further investigation is required. Such as getting samples analysed at a lab known to use different assays.

Antibodies to TSH cause the formation of macro-TSH which then appears as a higher level of TSH than is really there. Some TSH assays are not affected by macro-TSH.

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Thank you, I know ft4 has always been in range towards top end but always in normal range.

I'll get them all Tuesday and post with ranges

Thank you for your advice

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What do your free T3 and free T4 results say? Do they "agree" with your symptoms

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