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Thyroid UK
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Confused re consultation with endo.

I have waited 3 months to see a specific endocrinologist who can prescribe NDT. On arrival at the hospital I saw a registrar not the consultant requested. I have had RAI but am only on 75mcg and 100mcg on alternate days,however my blood test results are:

TSH 0.17 0.3-4.2

Free T4 18.1. 12-22

My symptoms are aching muscles on walking any gradient i.e stairs, excessive sweating and weight gain.

The registrar said that the muscle aches and sweating could be from a number of things (meaning age related ) and due to my results I basically had to put up with it. I told him I wanted to try NDT and he said they didn't prescribe it. I told him the consultant did prescribe it as I had researched him on line and he does! The registrar said he would write to him and quickly ushered me out of the consulting room. What a waste of time.

So what do I do with my dose of levoxathyrine as my results say I am over replaced. And how much thyroid do I have left if I am only on such a small dose of Levo? Very confused. Any advice would be greatly appreciated.

17 Replies
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I'm sorry you had such a wasted visit. Have you looked into your vitamin levels? Vitamin D, B12, folate and ferritin. If any of these are deficient they could be causing your symptoms. Levothyroxine doesn't work very well unless they are optimal.

Your FT4 is within range and you have no result for FT3 so you can't actually tell if you are over replaced. If your FT3 is within range then you don't need to worry about a low TSH is my understanding.

Have you got results for thyroid antibodies? TPO and TgAb otherwise known as thyroid peroxidase antibodies and Thyroglobulin Antibodies?

You'll probably get more help on this forum than you will from the endocrinology dept. although too bad you couldn't see the endo you wanted to. If you want to try NDT there are people on this forum who might be able to help. If you create a new post to ask for information specifically to source it, they can send you a private message.

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Thank you for your quick reply.

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These are the regulations re NDT from the BTA which most NHS doctors have to adhere to.

british-thyroid-association...

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Stefcon,

You aren't overmedicated. TSH is low but not suppressed and FT4 is only just over halfway through range.

If you've had RAI I doubt you have any functional thyroid left. 75/100mcg is a small dose but is sufficient for many thyroidless people whereas some with a thyroid gland need in excess of 250mcg.

If I were you I would order a private TSH, FT4 and FT3 test to check your FT3 and conversion. Low FT3 is often the cause of the symptoms you are describing. thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts on some packages.

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My vitamins were done in May and were all good. It's like banging your head up a brick wall trying to get a full set of bloods done every time.

Test results in May:

Thyroid peroxidase 13 0-34

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I've just checked your vitamin results and they aren't all good.

Your vitamin D level is 46 which is low. It should be around 100 ideally.

Have you been supplementing vitamin D? You were advised on how to do this by Clutter If not this can explain your muscle aches especially when walking and in inability to absorb levo properly causing the other problems.

.

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I did exactly what Clutter said and followed the advice. I have new vitamin stats and will update later. Thank you for your concern.

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I thought that the RAI zapped everything but this registrar said I would still have functioning thyroid ! Should I just stay on same dose then?

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If you're happy on that dose I would stay there. You could post vitamins levels here as docs often say they are fine when they are not. NHS will let you coast at the very bottom so long as you're just in range or even just below.

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Thank you. Insomnia is another symptom 😩 Lol.

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Taking magnesium and good B complex as well as vitamin D supplements may help

drgominak.com/sleep/vitamin...

But remember to stop taking any supplements with biotin in 3-5 days prior to any future blood tests as biotin can falsely affect test results

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The registrar is so wrong about aches/pains/difficulty walking not being due to levothyroxine. I had similar symptoms. They do not know any clinical symptoms and we, the patient, certainly are surprised/astonished that they can feel worse on levo.

I am sorry that your hopeful journey wasn't successful. The BTA have withdrawn NDT quite a while ago now and it's doubtful it will be prescribed.

False Statements were made about NDT.

thyroidscience.com/Criticis...

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I know what my body feels like and I didn't have all these pains 2 years ago before thyroid problems. I'm really fed up.

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Your results look fairly good, not over replaced, but without FT3, you can't really tell. If it was me, I'd shrug and buy my own NDT.

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I think I will.

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Don't forget that you'll probably have to get private blood tests done as you'll need Ft3 tested.

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Test results for May 2017

Vit b12. 383ng/l. 197-771

Folate 18.2. 3.89-26.8

Ferritin. 94. 13-200

Vit d2/3. 128.5. 59-150

Serum free t3

4.5. 4-6.8

Free T4. 19.3. 9.00-19.00

TSH. 0.04. 0.3-4.2

I had some red markers come up on lab results but dr wasn't concerned.

Gfr. 59. 60-120

Creatinine. 85. 44-80

Urea. 8. 2.5-7.8

Thanks for looking at the results

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