My dr wants to reduce my thyroxine

[Simplyred57]

My dr wants to reduce my thyroxine as my levels show I am overactive I’m on 100mg - on 75mg feel so unwell my hair and eyebrows fall out - under active symptoms and feel dreadful- tried 100mg & 75mg alternate days felt very unwell again and all the same symptoms- put me on 100mg and feel so well but my dr is saying I need to reduce again, I can’t go back to how I was feeling - help where do I go from here ?

[Treepie]

Post your blood test results : TSH,FT4,FT3 for advice.

[Simplyred57 in reply to Treepie]

My TSH is 0.21 T3 & T4 are normal 4.5 & 20 respectively this was sent to an NHS endo and he said to do alternate days 75 & 100 but it didn’t work last time

[fibrolinda in reply to Simplyred57]

Have you got the ranges for those results 🙂

[Simplyred57 in reply to fibrolinda]

That’s all I have ? I could call my dr’s what do I need to ask for ?

[fibrolinda in reply to Simplyred57]

Just that , the ranges, usually numbers in brackets after test result example t4 20 (11-22)

[Simplyred57 in reply to fibrolinda]

Thanks will ring my surgery and get them and post later

[Treepie in reply to Simplyred57]

Without the ranges it is difficult to advise.But you also need to know B12,D3, ferritin ,folate results and ranges.

[shaws Administrator in reply to Simplyred57]

Give up on your doctor as he - like thousands of other doctors and endocrinologists who have been given misinformation. Probably by Big Pharma who want patients to remain unwell and/or be given 'extra' prescriptions for remaining symptoms rather than a decent dose of thyroid hormones.

The TSH is from the pituitary gland, not the thyroid gland and it lowers as we increase our dose. Doctors should concentrate on whether the patient is feeling much better with relief of all symptoms rather than telling somone who is HYPO that they are now HYPER. That's impossible. What he does mean that you are on too much thyroid hormones but that isn't also true because the TSH is NOT a thyroid hormone. It is from the pituitary gland and rises when our thyroid gland begins to flag and doesn't produce the hormones it should. Being low is good and I shall give you a link and maybe give your GP a copy.

This is an excerpt:-

If you have persistent symptoms, you can demand that your physician change you to NDT and adjust the dose to keep the TSH at the bottom of its range-- when you have

the blood drawn in the morning prior to your daily dose. This may be sufficient treatment, but IF you continue to have hypothyroid symptoms, and no hyperthyroid symptoms, demand that your physician to increase the dose to see if your symptoms will improve, even if the TSH becomes low or suppressed. You can prove to your physician that you're not hyperthyroid by the facts that you have no symptoms of hyperthyroidism and your free T4 and free T3 levels are normal in the morning, prior to your daily dose.

They may even be below the middle of their ranges. Your free T3 will be high for several hours after your morning T4/T3 dose, but this is normal with this therapy and produces no problems. You should insist that testing be done prior to your daily dose, as recommended by professional guidelines. It's simple common sense.

TSH is not a thyroid hormone and is not an appropriate guide to thyroid replacement therapy. The hypothalamic-pituitary secretion of TSH did not evolve to tell physicians what dose of levothyroxine a person should swallow every day. A low or suppressed TSH on replacement therapy is not the same thing as a low TSH in primary hyperthyroidism. If you have central hypothyroidism, the TSH will necessarily be low or

completely suppressed on T4/T3 therapy; your physician must treat you according to symptoms and the free T4/free T3 levels.

hormonerestoration.com/

[Simplyred57 in reply to shaws]

Thank you for the information, it’s very overwhelming , is it worth paying to go private as I feel like I’ve hit a brick wall with my doctor?

[shaws Administrator in reply to Simplyred57]

You have two options - either source your own medications and get regular blood tests when necessary and self-medicate which many on the forum do.

Or go private - many patients have been disappointed but if you email Dionne at Thyroiduk she has a list of sympathetic ones. If you choose one you can put up a name on a new post and ask for information if they were good and the post will then be closed so that no names are put on the open forum.

[e-mail]

[shaws Administrator in reply to Simplyred57]

When you post results, always include the ranges because labs differ and so do the ranges and it makes it easier to respond.

[Simplyred57 in reply to Treepie]

TSH-mu/L 0.21 (0.35-5.5 ) below low ref limit

Free T4- 20 pmol/L(9,0-23.0 )

T3 - 4.5 pmol / L (3.5- 6.5 )

Ferritin - 160.0 ugl ( 30.0- 400.0. )

Vit D 88nmol/L Haemoglobin 32mmol/ mol

[greygoose in reply to Simplyred57]

The only reason he wants to reduce your levo is because your TSH is under-range. And he doesn't have the knowledge to understand that that means nothing, because it's your FT3 that is the most important number. And your FT3 is under mid-range. He actually has no idea what he's doing.

Your problem is one of poor conversion. Your FT4 is too high but your FT3 is too low. And, the only way to deal with that is to add T3 to a reduced dose of levo. It's doubtful your doctor would agree to that, so you would have to consider buying your own, if you want to get well.

[Simplyred57 in reply to greygoose]

Thank you, if I went private do you think the endocrinologist would pick this up and prescribe T3? Where do you buy T3 and how do you know how much to take ?

[greygoose in reply to Simplyred57]

Probably not, no. Most private doctors also work for the NHS, and tow the party line even in their private work. Just because they're charging you a fortune, doesn't mean they're worth it! You could try, but you might be wasting your money.

If you want to buy T3, write a new post asking people to PM you their trusted sources. We're not allowed to post links on the open forum.

You start dosing T3 the way you started levo - and any other hormone, come to that - you start low and increase slowly. With T3, that means starting on 1/4 tablet and increasing by 1/4 tablet every two weeks. You never go straight onto the dose you think you might need. For one thing that would be too much of a shock for the body, and for another, you could be wrong.

[Angel_of_the_North in reply to Simplyred57]

You are not overmedicated. In fact your free T3 is too low - showing that you are not converting t4 to T3 well. You might want to request the Dr Toft Pulse article from TUK and show to GP. It explains that many people need over range free t4 and suppressed TSH in order to make enough T3.

[Simplyred57 in reply to Angel_of_the_North]

Thank you I will definitely print the article - can I just ask how can you tell I’m not converting t4 to t3 ?

[Angel_of_the_North in reply to Simplyred57]

Because your FT4 is 78.57% through the range but FT3 is only 33.33% through the range.

[Simplyred57 in reply to Angel_of_the_North]

Thank you much appreciated .

[Hidden]

Can I ask why ranges are always so different? Is there a reason they vary so widely?

[shaws Administrator in reply to Hidden]

Labs use different machines and so the ranges may also be different too. There seems to be no 'standard' so ranges are essential for members to comment upon results.

[Hidden in reply to shaws]

Thank you. Not sure why they can’t all just use one system, surely it would make life a lot easier!

[Treepie in reply to Hidden]

Typical of NHS to have no standardisation of equipment or procurement.