Thyroid UK
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My endo appointment today, confused to say the least.

My endo appointment today, confused to say the least.

I appreciate any help any one can give me on my appointment today with my endo....

Well he refused to support me with t3.

Going on my blood results back when I was pregnant in 2011 when they decided to start me on levo, my tsh was 5.0 and my t4 was 8.8, he said the results was just slightly over, I was started on 25mcg, then eventually upped to 75mcg going on results, I was told to stop the levo as soon as I gave birth, which I did, 4 weeks I was restarted because I felt hypo, I felt awful.

He said biochemically he can't support t3 because my test results back in 2011 wouldn't support hypothyroid, but it don't hurt anyone to have a little levo added during pregnancy.

He wants me to stop t3.

I don't get it, I was on 175mcg and my tsh was1.17...

Surely if I was not hypothyroid I would be hyper?

He also wants to see now with t3 in my system how hyper my tsh levels are... Now I certainly don't feel hyper,

If anything the opposite... When I forget to take my t3 I feel awful.

He said he wants to help me, he also said that there is no proof that t3 works and it actually cause more problems later in life I.e osteoporosis and heart disease.

He also said, if I want he will refer me to any endo in the UK for a different opinion.

I'm confused, why do I feel so much better on t3?

Many thanks for reading

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He also said, he will refer me back to my go for physiology support to ween myself off t3.. I'm not sure what he was suggesting there, but it sounded like he was suggesting I am depressed or the drug is addictive.

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He is one on the 'converted' - i.e. levothyroxine alone and if we complain we're suffering from a somatization disorder, i.e. it's all in our mind and we imagine our symptoms because the TSH is 'perfectly in range' . They also give misinformation regarding liothyroinine (T3). Our body can exist without T4 but cannot without T3 as it is the hormone which isrequired in every one of our receptor cells.

Ignore this person as he is just quoting the guidelines. I have a life - on T3 only. I will give you a link and this doctor was on 150mcg once daily and was able to do all his scientific work, publish papers/articles and prevent suicidal thoughts. His father and his father siblings all committed suicide so as a teenager he studied lots of things and found out about T3 and how necessary it is for our whole metabolism and that enabled him to have a very fruitful and happy life and scientific life. So there was some genetic connection which many doctors would absolutely ignore.

Some psychiatrists also use T3 for their patients and they don't have hypothyroidism but T3 is needed particularly in our brains.

web.archive.org/web/2010103...

Excerpts:

1.For someone taking 100 mcg of T3, we expect your pattern of lab results—a low TSH and high T3. However, your TSH and T3 levels are irrelevant to whether you're overstimulated or not. Two studies we just completed confirm other researchers findings: these tests are not reliable gauges of a patient's metabolic status. Many patients taking T3 have TSH and T3 levels like yours but still have severely low metabolic rates. Their metabolic rates become normal only when they increase their dosages further. Their metabolic rates become normal and they have no detectable overstimulation.

2.Most endocrinologists subscribe to the practice guidelines of the American Association of Clinical Endocrinologists. When a patient such as you sees one of these endocrinologists, he’s likely to take her off T3 and switch her to T4-replacement. As many patients have told us, when an endocrinologist switched them to T4-replacement, they became ill and dysfunctional again. These reports are consistent with studies that show the ineffectiveness and potential harm of T4-replacement. The studies show that T4-replacement leaves many patients suffering chronically from hypothyroid symptoms[1][2][3][4][5][6][7] and gaining weight they can't lose through dieting and exercise.[8] The patients are also likely to use more drugs and develop one or more of several potentially-fatal diseases.[9]

Potential harm from T4-replacement has thus been scientifically documented. In view of the risks, you must consider for yourself whether you'll permit your therapy to be changed from Cytomel to T4-replacement. If you decide not to permit it, you can seek out an alternative doctor who understands how ineffective and harmful T4-replacement is for many patients. Alternative doctors are generally more cooperative than conventional doctors, and most of them take the time to learn the cause of troubling symptoms. Because of this, you should be able to find one who'll help you ferret out and correct what's causing your occasional symptoms of overstimulation.

3.Now, to address your rheumatologist’s assertion that T3 is dangerous, and his implication that amitriptyline is not. I think the best way to reply to him is to quote publications that are available to him. In the USA, when patients get their prescriptions filled for T3 (usually the brand Cytomel), the pharmacist usually gives them a leaflet on the product. The leaflet contains the following statement:

"NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine." (Medi-Span, Inc.: Database Version 97.2. Data © 1997.)

This statement makes a fact perfectly clear: When used sensibly, T3 is extraordinarily safe among prescribed drugs. When I say extraordinarily safe, I’m comparing T3 with drugs such as the amitriptyline which your rheumatologist prescribes for you. Below is a list of potential harmful effects of amitriptyline. This list comes from the Physician’s Desk Reference, 53rd edition, Medical Economics Company, Inc., Montvale, 1999, page 3418.

*****

I am well as are a lot of other members, even the addition of T3 to T4 is very helpful too.

web.archive.org/web/2010103...

You know what makes you feel good despite what he is inferring.

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Interesting contrast with Dr Lowes view that T4 is of no use on its own and the post an hour later by HIFL in response to Human Beans question.

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I'm on T3 only, and wouldn't have it any other way. Synthetic T4 and NDT made me very ill.

This man is not only ignorant, but is incapable of thinking for himself. Why does he think the body converts T4 to T3 if it's so bad for us? That is just stupid. I would ignore him if l were you. It's pitiful. Don't do the test to show ' how hyper' you are. It's a trap. Of course your TSH is going to be low, you're taking T3. If he wants to see the effect it's having on you, he should test the FT3, and only if it's over range will you be 'hyper'. He can't even use the correct terms! Technically, you can't be hyper unless your thyroid is making too much T3. What he means is 'over-medicated'. Pathetic little man.

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Thank you..i was in tears in the his office today, i did unfortunately take the test, but unsure as to whether he is testing ft4, i have to take another test at the end of august before i see him again, i have the blood test form here but can't understand which thyroid functions he's testing for, i'm not going to stop taking t3, i don't see why i should, i feel so much better on it! but if i'm to do the test in august, how long should i stop taking t3?

i just can't believe he has ignored my symptoms, and basically saying i'm crazy! it's all in my head

i will take a pic of the form maybe you can make head or tails of the tests he has requested?

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Thyroid tests are :

TSH

FT4

FT3 (or anything that says Free)

TPOab

TgAB

But he will no doubt do a lot of other useless tests because they always do, just to make it look like they're doing something!

Don't stop taking the T3 before the test, that could make you unwell. You are not their servant, not their slave, bound to do whatever they decree. You are your own person and do as you wish. If you want to take T3, you take T3. They can't order you to stop. If they won't play ball, well, there are plenty of us that manage without doctors and endos...

As to the symptoms, I Don't suppose he knows what hypo symptoms are. Basically, he just doesn't know what he's doing, that's all.

Don't worry about the tears. Who could blame you! Wouldn't be the first time a hypo patient cried in an endos surgery. I certainly have! It is so frustrating and demoralising to be treated like that. Besides, being hypo makes us more prone to tears. Just proves you're hypo, that's all.

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I'm struggling to understand what he wrote, he has ticked the box for tsh, but what he has written is a big ?.. I would like to post a pic but not sure how x

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You'll have to start a new thread/question. There is a button half-way down to add a photo. At the moment, it isn't possible to add photos to answers like this, I'm afraid.

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i managed but it's at the top of the page x

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Oh, well done!

Yes, his writing is bad, of course. Looks like he's written FT something and FT, whatever that means! Or the F could be a P. But I Don't know what that would mean! FCB, ESR and 9 am cortisol.

FCB is a Full Blood Count, just checks general health, nothing to do with thyroid! ESR is the cheapest test, I think, which is why they always do it! It just checks for inflammation, but that inflammation could be from anything, not just thyroid.

The 9.0 am cortisol test is only of any use if you have high or low cortisol at 9 o'clock. It doesn't tell you anything about the rest of the day. Your cortisol could be ok at 9.0 but high at 10.0 pm. So, of limited use. But they Don't do the 24 hr saliva test on the NHS, so I guess he's done the best he can.

Just have to wait and see!

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He gave me his secretaries number I shall call and ask to be sure, thank you so much for all your help, I'm feeling so much better now... I almost started to judge my own mental state for a moment... :(

The tests that was done today I shall post once I have them :)

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OK, I'll keep my fingers crossed for you! But never, ever doubt your own mental state. It is not you at fault, it is your thyroid and this crazy medical system we have to deal with!

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Certainly is a crazy medical system :( I just wish I had someone with me at that appointment today... But hey ho.

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Not sure it would have done any good...

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When I've thought they were going to mess about with my T3 I have not taken the previous day's dose altogether and taken it after the blood test. So roughly 48 hours.

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Nikki, There are plenty of endos who prescribe T4+T3 despite the current lack of evidence based research to support it. Your endo is putting his prejudice before your wellbeing. Ditch him and email louise.warvill@thyroiduk.org.uk for the list of member recommended endos.

As long as your FT3 remains within range you aren't at increased risk of AF or osteoporosis.

My health deteriorated significantly when I was switched from T3 to T4. I'm okay on T4+T3 combination now but I would never agree to stop T3 to 'prove' to a doctor how ill T4 only can make me.

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Thank you! Can I post pictures on here?

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Thank you everyone for your replies, I just wish I had someone like yourselves with me at my appointment today... I went in happy and ended up a total mess. I just didn't know how to defend myself. :( see what happens on my next appointment see what he says then xx

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When you realise you know more than most doctors on how to get yourself well that will give you courage although, of course, we cannot argue but just say how much better you are and won't return to a product that makes you unwell.

Also you have more supporters on this forum even though they cannot accompany you to your appointment.

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