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Thyroid UK
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Endocrinologist appointment

O.K, I'm not sure if going to the Endocrinologist was a good idea...it has left me with more questions than answers and a 'Massive' invoice to boot. Aside from cost, she took a look at my medichecks report, after I made it VERY CLEAR that I came off my T4 for a number of weeks beforehand. She wanted to do the following tests last night, bearing in mind that I have been back on the full dose (200mcg) of T4 for four weeks only and should wait for at least 10-12 weeks before testing again.

FBC and Differential, Folate, Free T4, TSH, blood cortisol, Urea & Electrolytes, Bone Profile, CRP, TTG.

I have very recently started taking D3 spray and taking a vitamin B complex and vitamin K. The only thing missing is Ferritin supplements.

I am aware that I initially shot myself in the foot by not taking the T4 for weeks before doing private blood tests, so can we get past that please...

I don't know if I should do the tests or not as she seems convinced that I am being under dosed with T4 at 200mcg a day.

I'm more confused than ever except to say, I'm going to concentrate on vitamins before retesting the thyroid panel.

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What's happening about the Anemia?

I thought Haematology was the priority ?

How long have you been on 200mcg? Didn't you start back on 50mcg and gradually increase?

3 weeks is a short time in which to go from 50mcg to 200mcg isn't it. Did your Endo have an opinion on this?

I may have missed a post as not able to be on here all the time.

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Nothing is happening with anaemia, Haematology wasn't interested, told me to go to my GP and seeing as I no longer trust him...that was a bust!! I am looking for a suitable supplement in the meanwhile.

Directly after the private bloods, I went back on 200mcg, without any side effects....just the same as I have been for years....!!! Except for the D3 and Vit B complex and Vit K.

Endocrinologist didn't even bother, just wanted to arrange her own bloods, dismissed my request for an ultrasound on my thyroid. Dismissed the saliva test for cortisol levels insisting on a blood test for cortisol levels. Oh well, if I want to get well, I'm going to have to follow the optimal protocols set by STTM website and do my own private bloods, until my life changes around, sourcing my own T3.

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What's STTM?

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STTM is the 'Stop the Thyroid Madness' website. I'm surprised you haven't heard of it and the books. An compilation of 1000's thyroid patients worldwide experiences of inadequate treatment of their thyroid conditions. Well worth reading the books.

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But very US-orientated, so not always useful or applicable to people in the UK.

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I have been back on the full dose (200mcg) of T4 for four weeks only and should wait for at least 10-12 weeks before testing again.

Testing should be done every 6 - 8 weeks after each dose change. Waiting for 10 - 12 weeks is much too long a gap.

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Or to put it another way - we shouldn't have to spend three months being over-treated or under-treated. That would just be torture!

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It wasn't a dose change, I have been on 200mcg for years. I came off the T4 only to do the private blood tests. After the blood test, I started back on 200mcg with no side effects.

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Oh, sorry, my misunderstanding.

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No worries....I'm at the point of just throwing in the towel with UK GP's and Endo's and doing things on my own according to STTM website. Let's face it, I can't do any worse then they have!!

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Why dont you simply self treat with NDT and only treat on symptoms as they did for 100years ...theres no real need for tests when on NDT ...just adjust up or down by 1/4 grain to your sweet spot

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I may do a bit more reading into it. I get mixed up with grains vs. mcg, so don't want to do mess things up that way.

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I have sent you a message to a link for correct treatment plan using NDT

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4 weeks on nil Levothyroxine - straight to 200mcg is a big dose change. Thought you started back on 100mcg?

When first diagnosed didn't you start on 50mcg ?

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Years and years ago started on 50mcg, GP kept upping the dose over a period of months till it reached 200mcg. Been on 200mcg ever since.

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If she didn't ask for free T3 I'd be a bit wary of her expertise. Was she on the TUK recommended list?

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No, as the TUK have no approved recommended persons in the East of England, the only option was to take pot luck and now I know, I don't think that I will be returning to her.

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After 8 weeks or so back on the 200mcg, get your T3 tested again, alongside T4 and TSH (Medichecks or Blue horizon). If you've been on 200mcg for a long time and still have issues, it's more likely that you're not converting well to T3. If your T4 is top of range, but your T3 is not in the top 1/4 at least, this is likely a problem.

You could consider optimising cofactors like Selenium, Magnesium, Zinc, and Vitamins A and D. These are all essential for proper T4 > T3 conversion.

If even with decent minerals and vitamins your T3 is still low, then a lower dose of T4 combined with T3, either as tablets or via the NDT route could be helpful.

thyroiduk.org.uk/tuk/treatm...

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