Advice please

[Kiabara]

Hi, I am newly registered and I am preparing to do battle with my endo next week. He does not understand Hashimotos and has been saying really confusing things, please see below.

Me - If I have raised antibodies, surely going gluten free would help?

Endo - Well, if you think going gluten free helps, sure. Why don't you do it?

Me - I felt better on T3, surely I should be kept on it?

Endo - No, T3 is a placebo and has no clinical efficacy in any of the studies I've seen.

Me - I have raised antibodies, surely my results would be influenced by antibody/autoimmune attacks and flares?

Endo - No, any results which suggest hyperactivity would be caused by simply taking too much thyroid hormone replacement.

I am feeling worse with symptoms of tiredness, poor healing from wounds and infections, joint pain, hunger, dry eyes, tiredness, sore eyes, puffy face, feeling cold, sweating more, weight gain.

Diagnosed 2012.

Taking 100mcg Levothyroxine.

Thanks in advance.

TSH 7.8 mIU/L (0.2 - 4.2)

FREE T4 13.8 pmol/L (12 - 22)

FREE T3 3.6 pmol/L (3.1 - 6.8)

TPO ANTIBODY 904.5 (<34)

[Nanaedake]

You are not taking enough thyroid hormone. YOu need to increase your dose. Your TSH should be around 1.

T3 is not a placebo. It's a thyroid hormone. If it were a placebo our bodies wouldn't produce it at all. Clearly it's there naturally for a reason. There is no conclusive research to prove that taking a combination of T3 and T4 works better than T4 only but absence of evidence is not proof and it does not mean it isn't effective, it means it hasn't been proved. It hasn't been disproved either. Patients say they feel better with it and there is research to indicate that. There could be reasons for improved feelings of wellbeing that haven't been discovered yet. For example, T3 may improve gut function over taking T4 only...no one has done the research yet.

[Kiabara in reply to Nanaedake]

I tried to tell endo I felt better and could I have it reinstated and he said "sorry I don't support T3 or armour or NDT. If you get these online I will discharge you from the clinic because you are more likely to kill yourself by taking these"

[Jazzw in reply to Kiabara]

I think I might be tempted to tell the endo I was afraid *he* was going to kill me, seeing as he's using the title "endo" and doesn't seem to know what he's talking about. For the love of Pete, why doesn't he do some background reading if he doesn't know about thyroid problems, T3 and Hashimoto's??

There have been so many contenders for Endonob of the Year in 2017...

[SlowDragon Administrator in reply to Jazzw]

Quite agree

Nominated for worst of the year (but there are a lot of contenders)

[Nanaedake in reply to Kiabara]

That's a ridiculous assertion by the Endo. If T3 kills people then why does your own thyroid produce it?

If you take too much of any thyroid hormone it will make you ill including T4 or levothyroxine.

More to the point, ask him, why the NHS prescribed c**p levothyroxine for years and served it up to patients to make them horribly ill only to discover that the scientists that advised the Commission for Human Medicines had levothyroxine wrongly classified and did not understand its dissolution properties and therefore they had approved preparations of levothyroxine that were inadequate and making patients very unwell.

So the NHS badly failed in quality controls and now they want to deprive patients of medicine that have improved their health. How many people were made horribly ill or hypothyroid by ineffective and badlly produced T4? Now the NHS is trying to tell patients that the T3 ,that actually rescued their health while NHS levothyroxine was faulty, is going to kill them. How are patients meant to have confidence in anything the NHS or Endocrinologists tell them?

Ask your Endo what the 2013 MRHA Levothyroxine

Tablet Products: A Review of Clinical & Quality Considerations says about levothyroxine quality and how he can be sure that sufficient controls are now in place?

gov.uk/government/uploads/s...

Ask him how Endos can refuse NHS treatment to people who take legal drugs even if procured overseas since the NHS treats millions of drug abusers, including those who abuse illegal drugs.

I believe Endo's have been given targets to get people off T3. Ask him what his target is. I believe it's to reduce by 60% or something like that.

[Kiabara in reply to Nanaedake]

Thanks I didn't mean to make anyone angry so I will just give up trying to help myself

[Nanaedake in reply to Kiabara]

My apologies if I sounded angry. It does make me feel angry when Endos take T3 away and leave patients hypothyroid and don't even know about all the problems with levothyroxine over the past 10 years that have caused patients to feel ill and need T3.

[Jazzw in reply to Kiabara]

Um, we're not angry, we're upset on your behalf. Sorry - what can we do to help you? Your "endo" is terrible and we know this from what he's saying. It's an awful state of affairs. But unfortunately, he's not going to change his tune if you don't challenge him - and him threatening you if you make a move to help yourself is a very bad sign.

Do you go in to your appointments alone? Is there someone you could take with you for back up?

[SlowDragon Administrator]

Your endo is living in dark ages

No point seeing him

Email Louise at a Thyroid UK for list of recommended thyroid specialists [e-mail]

You could send him this

patients-association.org.uk...

Do you have Hashimoto's (high antibodies)

Yes Changing to a strictly gluten free diet very likely to help reduce symptoms, help gut heal and slowly lower TPO antibodies

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

You are now very under medicated

Vitamin levels likely to be dire