Wondering Where To Go From Here: After 16 years... - Thyroid UK

Thyroid UK
109,806 members127,601 posts

Wondering Where To Go From Here

Naomi8
Naomi8

After 16 years on thyroxine,I was prescribed liothyronine by the NHS until it was withdrawn.I bought my own & took T3-only for 2 years,following Paul Robinson's protocol for healing the adrenals.My energy levels improved but due to other issues,I have been on NDT for over 2 years.I have recently relocated from Cumbria to Sussex & my new GP (head of practice) yesterday informed me that I have to go back to thyroxine.He has no knowledge or experience of NDT & is totally closed-minded.The blood tests the GP practice did when I joined & the Medichecks full thyroid panel I paid for myself,both show levels I consider to be desirable.Unsurprisingly,the GP & endo he emailed,are freaking out about me being on NDT,a suppressed TSH & high but in range FT3.

Also,during my 2 plus years on NDT,I have gone from a size 16 to a size 18 & am now obese.My energy levels have decreased,my fatigue increased,my muscles have become weak.I tried raising my dose but my FT3 went over-range.

I have also done a Blue Horizon genetics test,which showed I inherited the D1O2 conversion issue from both parents AND I do not clear cortisol efficiently.This explains why I have always struggled with anxiety & have had 2 breakdowns-one on thyroxine & one on T3-only.

I am thinking of changing back to thyroxine with liothyronine,as a result, & giving it a long enough trial,which I did not do,originally.

It appears I only have one practice in my locality,because over the next year it is amalgamating with the only other one,which is full.

I am stressed by worrying about the GP visit yesterday & his utter intransigence.My woman GP in Cumbria trusted me to look after my own thyroid health,just providing the blood tests including FT3.What a contrast.I can't work with this GP.His mind is utterly shut.

Any thoughts?I woke at 2.30 am,disturbed by my appointment with my GP.I do not want to risk another crack-up.I am not prepared to give up T3 in some form.

16 Replies
oldestnewest

This is terrible Naomi8. What is particularly awful is the amount of mental stress this is putting you under. How dare this GP do this to you?

He has no knowledge or experience of NDT so rather than taking advice or finding out about it, he is going to make you ill by insisting you take T4 only, which you know doesn’t work for you AND he is going to upset you and put you under stress too. He is going to make you very ill and this cannot be allowed to happen.

I’m not sure what to suggest - you could try another GP at the practice - but I’m not sure whether they would dare to contradict the head of practice.

I know it isn’t an option for everyone as it isn’t cheap, but you could ask people on here to recommend a private specialist in your area who is T3 and/or NDT friendly.

The only other thing I can suggest is what many on here do - go it alone, tell the GP you do not want thyroid treatment from them and will not discuss it. Pay for your own blood tests, source your own meds and monitor your own health - with the help and support of people on here who do the same. 🤸🏿‍♀️🥛

HiddenThis reply has been deleted
shaws
shawsAdministrator in reply to Hidden

Yes reallyfedup123 Criminal is the word that can be used for these people who make the guidelines - (are they doctors or accountants - they certainly have no heart to refuse hormones which suit us whatever that is i.e. NDT, T3 or T4.

There is no compassion whatsoever. We're not asking for something out of reach but if you have the ££££s you can do. No regard is given for people who are unable to work or have difficulties in their workplace. and the worries that entails. Or don't have monies for private appointments etc.

They took the opportunity to withdraw T3 instead of sourcing a cheaper one and made False Statements about NDT in order to get that removed as well. A thyroid hormone replacement in use for many, many, many years and successful for patients.

Are they accountants? Or idiots!!! I have to say idiots and doctors like Dr Skinner, Dr Peatfield and others had a war waged against them because they did as they were trained as trainee doctors where commonsense was used.

We have paid into the NHS and those who have little money should get the same treatment as those who can afford to pay.

It is criminal in that there are hormone replacements that make people well so they should be permitted a trial and sometimes that means the same but from a different manufacturer.

The whole collusion and the fact that doctors who want to prescribe are forbidden and threatened with losing their jobs is beyond the pale..

Are we to become thyroid suffragettes?

HiddenThis reply has been deleted
shaws
shawsAdministrator in reply to Hidden

It is disgraceful and due to those who are supposed to be the 'experts' we may well have to pay for everything medical as we've no idea what's ahead in the near future.

Naomi8
Naomi8 in reply to MissGrace

Thank you for your reply.I have just got up from a nap,to try & make up for my broken night.I do actually feel unwell & I think its stress.I also feel low.I am really frightened of getting mentally ill for a 3rd time.The first time,in 2011,I endured it for 2 years.The second time in 2016 I put myself on antidepressants for 18 months,which healed my brain.It is impossible to say which has caused my weight gain-could be both(NDT or Sertraline)I certainly don't want to have to go on them again,even though they were a fantastic help.

I'm actually a fighter & I'm not giving in!

I have paid for my own LDN,NDT,T3 blood tests etc.Its just the thought of having to work round the system yet again!

The mistake I made was being honest.I'll start lying again now.

When I first decided to go on to T3-only,I dropped the thyroxine ,bought my own extra T3 & just kept collecting my Rx for thyroxine.I never told anyone I was taking 55mcgs T3 for 2 years.When I first started taking T3,my body reacted to 5mcgs 3 times a day for 3 days & I ended up in A&E & kept in overnight with non-sinus heart rhythm.I never told the ward team it was T3 that triggered it.I knew they'd freak out & cancel my Rx.I later built up to a daily 55mcgs without a rise in heart rate,temperature or BP.

Let battle commence!

SlowDragon
SlowDragonAdministrator

Suggest you email Dionne at Thyroid Uk for list of recommended thyroid specialists

There are a few T3 friendly ones near you

Ideally see one privately who also still works on NHS. Then you can transfer to NHS after initial T3 trial

Do you have Hashimoto's?

What are your vitamin levels like?

Naomi8
Naomi8 in reply to SlowDragon

Thank you for your reply.I emailed Thyroid Uk for the list first thing this morning.As I am in East Sussex I am hopeful of finding a thyroid specialist who can work with T3.

Thank you for the tip on preferencing a private endo who also works on the NHS.

I have Hashimotos-diagnosed 1998.

I have had a vitamin D test & the Medichecks thyroid tests included all the others.The levels are good.

SlowDragon
SlowDragonAdministrator in reply to Naomi8

So as you have Hashimoto's are you on strictly gluten free diet?

Or ever tried it?

Ideally ask GP for coeliac blood test first or more likely buy test online for under £20, just to rule it out first

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

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

As you have DIO2 gene variation you will still need T3

Appalled at Cumbria endo. Shame on him

Naomi8
Naomi8 in reply to SlowDragon

Yes,I went GF for a few months.Have done coeliac blood test(negative)& Blue Horizon's genetic test ruled it out,too.

I have no intention of stopping T3 in some form!

SlowDragon
SlowDragonAdministrator in reply to Naomi8

Vast majority are not coeliac, but a very high percentage find strictly gluten free beneficial

Did you notice any improvement in symptoms when gluten free?

Or reduction in antibodies?

Gluten intolerance is due to molecular mimicry. It's not to do with any genetics.

amymyersmd.com/2018/04/3-re...

restartmed.com/hashimotos-g...

thyroidpharmacist.com/artic...

shaws
shawsAdministrator

If you have the Gene DIO2 you should be on T3/T4 as you are unable to change T4 into T3. Give your doctor a copy of the following. You have a medical need. T4 is supposed to convert to T3 but if your body is unable to do so they have to give your T3.

thyroiduk.org.uk/tuk/testin...

Excerpt:

Firstly, you need to know that everyone inherits two copies of each gene, one from their mother and one from their father.

To explain this paper briefly, the DIO2 gene activates tri-iodothyronine (T3) and the researchers found that a tiny fault in this gene could mean that although the body gets enough T3, the brain doesn’t.

The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents."

Does your doctor know that levothyroxine is supposed to convert to T3? And that T3 is needed in our millions of T3 receptor cells. T4 is an inactive hormone.

The Associations have been successful in - withdrawing NDTs in use for many, many years.

Recently they took the opportunity of withdrawing T3 (the Active thyroid Hormone) needed in our millions of T3 receptor cells.

Are they aware that levothyroxine T4, is an inactive hormone ?Why do they make those people who are having difficulties with their thyroid hormone replacement suffer mentally as well as physical.

This GP told me that he has never had a patient with a problem on thyroxine & suggested that things have improved since thyroxine became levothyroxine(they are identical)

He also told me he would only be prepared to work with an endo HE knows & rates.The idea of using a list from an organisation like TUK was not acceptable.

I am not going to bang my head against that particular brick wall!I met the same mind -set at my appointment with the endo in Cumbria who told me his job was going round removing everyone's T3 prescriptions & getting them back on thyroxine.That's when I walked.

It’s disgraceful. Your GP sounds like a pompous pr*ck. if that’s his attitude to his patients, (and I bet he is keeping a fair few ill on T4 only and telling them they eat too much and are depressed), I wouldn’t want him treating me for an ingrowing toenail, let alone a chronic condition. God forbid anyone goes to him with anything life-threatening! 🤸🏿‍♀️🥛

I'm hoping that by the time the two surgeries amalgamate,he will retire!Its a stark contrast to the 2 women GPs I had had in Cumbria.I hear the other surgery is bigger,with more women GPs & is a good practice.I am so lucky to be able to afford to buy my own medication,supplements & see a consultant privately if necessary.

I have to sort this thyroid stuff with him for the moment,but everything else,I will see someone else in the practice.I've already seen 2 women Gps for emergency appointments(sinus infection & gout)& they give the impression they loathe their jobs.They don't even crack a smile.

You may also like...