Thyroid UK
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New Consultant- completely disregarded FT3 and Vit B12

Feel so utterly disappointed and angry.

Visited my new consultant today (new to area - Cornwall) and have drove home in tears.

No physical medical exam at all, just a 10 minute history taking and the conclusion that I'm over-medicated and Thyrotoxic; reduce Levothyroxine.

Questioned and challenged FT3 Level, to be told FT3 is unreliable marker, therefore not relevant. He completely disregarded the T4 to T3 conversion issue possibility. And went on further to say the whole trust dosen't support either monitoring FT3 or replacing with T3.

I questioned and challenged Vit B12 (mine currently 198 ) and was told it was normal and would not support replacement at all. Candidly saying the his has patients with B12 of 50. I pushed on with saying that I had just about every symptom and again told it was likely to down to being Thyrotoxic. So I pressed further with saying that guidelines say to treat if B12 low but in range but symptomatic but again told no!!

I was offered no physical examination or not offered any further investigation, saying "what would like me to do for you???" I was so stunned that I said what about investigating me?? And then I listed what I wanted.... I walked out with a TPO, Vit D, and cortisol blood form and an appointment in 4 months.

I'm cold, exhausted, constipated, have gained loads of weight, have terrible brain fog, memory issues, feel like I'm on a boat most of the time. I've got aching muscles, and feel awful with any type of exertion. I have tingling pins and needles and sometime random numbness sensations.

Do I insist on seeing a different Consultant?? Can I ask to be transferred to someone else at the same hospital ??? This one made me feel that I was self diagnosing wannabe who was reluctant to reduce my dose of Levothyroxine.

Serum free T3 4.6 (3.1 -6.8)

Serum free T4 31 (12.0 - 22.0)

TSH 0.014 (0.27 - 4.2)

Serum vitamin B12 level 198 ng/L [180.0 - 866.0]

Serum ferritin level 57.9 ug/L [13.0 - 150.0]

Serum folate level 9.8 ng/mL [3.9 - 26.8]Full blood count

FBC

Haemoglobin concentration 126 g/L [120.0 - 160.0]

37 Replies
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On this evidence you are a poor converter (FT4/FT3 ratio 6.7 when it should be around 4 or less). Therefore trying to raise your FT3 by more T4 won't work. You look to be definitely in need of T3 supplementation to get your FT3 up to say 5,5 or more and your consultant in disregarding and demeaning the value of FT3 is completely ignorant of matters thyroidal. I would not see him again as he clearly has no uptodate knowledge at all.

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Bexg,

What physical examination were you expecting and why?

You are overmedicated to have FT4 31 which is considerably over range and such suppressed TSH. With FT4 so high it is likely that FT3 level is being blocked by rT3 to prevent hyperthyroidism. Did your consultant recommend reducing dose?

Is there any point in seeing another consultant if the Trust doesn't support testing FT3 or prescribing T3? If it turns out you need T3 after your FT4 drops into range why not buy your own T3 and self medicate?

If you have symptoms in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice about low B12 and how to get your GP to treat it.

Folate and haemoglobin are fine.

Ferritin is optimal halfway through range. You can raise ferritin by eating more iron rich food (liver is good) or supplementing iron with 1,000mg vitamin C to aid absorption and minimise constipation. Iron should be taken 4 hours away from Levothyroxine.

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Yes I am going to reduce my dose.

As a new patient I would expect to be checked over..... have a pulse check, listen to my heart, maybe check to see if I have a tremor, abdo check for hepatosplenomegaly, maybe a quick feel of my thyroid????

If I am Thyrotoxic would this not be sensible???

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Bexg,

Being thyrotoxic will normally cause tremor and elevated pulse. It would be expected. Unless you have a goitre or nodules or have had thyCa I don't think throat and neck are routinely examined.

Not sure why you think liver and spleen need checking. I've never heard of this being done during a thyroid consultation.

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My point is....

My symptoms do not match my diagnosis. In fact I have opposing symptoms (feel hypo when results say hyper)

Whilst I'm all for the lab results......I think looking at numbers on a screen rather than listening to a patient is poor even if the outcome is the same.....maybe I'm old skool and believe that a comprehensive assessment should include actually examining someone. (If he had he would be able to confirm that I am not tachycardic or arrhythmic, I do not have a tremor.....) interestling I have had abdominal exam in the past and my son did 2 weeks ago (also secondary hypothyroid)

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Bexg,

Whether you have symptoms of overmedication or not, you are biochemically overmedicated to have FT4 31. If you don't feel any better after the dose reduction or if FT3 drops as well as FT4 after the dose reduction then you might consider self medicating and add some T3 to the reduced Levothyroxine dose.

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I would expect some sort of physical exam. Even my endo always feels my neck (no thyroid) and does reflexes and looks me over, listens to heart and lungs. A computer could have done what your doctor did, probably better.

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Absolutely!!

This was my first ever appointment with him.... it was like he'd seen my results and didn't need to know anything else.

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Clutter, do you have any links to show that rT3 blocks conversion, and isn't just the result of a conversion problem?

diogenes, do you have any information on this? If so, how does this work?

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Greygoose,

No, I don't have links. The point of rT3 is to block over conversion of T4 to T3 to prevent hyperthyroidism. I did say it block conversion and not block receptors.

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Yes, I know what you said. So, where did you get that information?

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Greygoose,

I'd gladly share that with you but as I didn't bookmark it I don't remember.

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A Study of Extrathyroidal Conversion of Thyroxine (T 4 ) to 3,3′,5-Triiodothyronine (T 3 ) in Vitro

researchgate.net/publicatio...

Abstract

... However, various other agents including several thyroid analogues and propylthiouracil (PTU) inhibited T4 to T3 conversion in a dose-dependent manner. Inhibitory thyroid analogues, in order of their potency, were rT3, 3',5'-diiodothyronine, tetraiodothyroacetic acid, 3,3'-diiodothyronine and 3-monoiodothyronine; on a molar basis, the relative potency of these agents was approximately 100:100:5:1:1. PTU was about 3% as potent as rT3 on a weight basis and only 1% as potent as rT3 on a molar basis. Analyses of the data by Lineweaver-Burk plot suggested that rT3 is a competitive inhibitor and PTU, an uncompetitive inhibitor of conversion of T4 to T3. The various data suggest that: a) monodeiodination of T4 to T3 is enzymic in nature, and b) rT3 is a very potent inhibitor of conversion of T4 to T3.

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I don't think there is any evidence for or against.

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OK, thank you.

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You know on occasions like this, since the man is clearly a menace to any patient he encounters, I wonder if a well thought out letter to him simply stating the he is fundamentally wrong, and has no grasp of modern day thyroid knowledge and diagnostic procedures. That rather than FT3 being irrelevant, it should be the test relied on as opposed to FT4 and TSH. Showing you are someone who has a grasp of the real situation will not alter his thinking but at least he will have received a sharp slap across the brain and realise that patients will not always kowtow.

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Hear, hear!

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As the inventor of the original fT3 test, a letter coming from you would be amazing :)

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I'm surprised that you have as much T3 as you do have. Typically the free T's balance themselves out, the more Free T4 you have the less Free T3 and vice versa unless you are supplementing with T3.

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No, I have only ever taken Levothyroxine.

Hopefully reducing the dose will rebalance.

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Kalicocat,

That rather depends on what is going on!

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I have charted my Free Ts in Excel and that is always what happens with me and that is also what is reported in a number of studies. I've also gone very low on T3 (below range) and that is when my T4 was the highest.

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That's fine, but it's not a general principle.

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You read any studies?

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Plenty, plus thousands of forum posts over several years!

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I'm talking about when you are adequately treated and have an appropriate corresponding TSH in the .5 to 1.5 range, that is the way things normally work. And that is the way things generally work in normal non Hashi's euthyroid people. When you are over medicated on T4 your body will convert T4 to reverse T3, period. And the higher the T4, the lower the T3 will be (as much of it will be RT3), especially if the T4 is grossly over range.

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The OP has an obvious conversion issue.

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The original poster is taking FAR too much levothyroxine.

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Please see the first reply to this thread, written by Dr John Midgley.

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I don't need to

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Yes, always best not to challenge any pre-conceived notions...

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Honestly...

I seriously doubt you will get anywhere with any other/new doctor. Seeing what's happening recently 're thyroid issues, dosing and meds... have a look around on this forum - eye opener.

From your previous posts I gather you've been on this for quite some time.

If it was me - I'd go self medicating route and ditch the stress of seeing unhelpful doctors.

Reading you're post it brought back memories of my own experience with NHS GPs and Endos.

I self medicate, whatever tests NHS doctor is happy to do for me - I do, the rest I do privately and self medicate with t3.

Granted, it costs money but it's either that or feeling carp.

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I have only been on this forum for a few weeks, since my dodgy FT4.

I have been on Levothyroxine for 22 years and have been mostly been well. I've only seen Endo to monitor TFTs as have secondary hypothyroidism which seems to worry GPs. I have been euthyroid with in range TFT for > 12 years.

I have been one of the lucky ones that hasn't suffered too badly 😊

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Yeah, I meant you have thyroid issues for some time. I wasn't referring to your time on this forum.

Get yourself t3, drop Levo to lower t4 and monitor your thyroid blood levels either with the help of GP or privately.

The same with b12. Self jabs if NHS refusing.

Lots of people on here do it on their own. You can do it. It's not difficult.

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A whole new world to me!!

Quite exciting really.

Thanks 🙏

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Yes I know. And it sounds scary but you have this and PA forum and there's plenty of clever people to give you advise and great help if and when you need it. You're not going to be on your own!

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Thanks 😍

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