*****Update ****** Faulty DIO1 & DIO2 results, helpful hints on how to persuade my Gp Levo not working too well

[ferretmam]

*** Update ****

Just to let you know that Gp visit didn't go well. It was a stand in doc who clearly didn't care. By her own admission knew very little about where FT 3 & FT 4 should be in their ranges and has no knowledge about genes. She started to say that i should really see an Endo but then promptly changed her mind and said she'd rather wait and see if my symptoms settle down or get better. She also said that she thought i shouldn't be spending money on testing as that means i'm probably over thinking my condition and stressing myself unnecessarily. She's also not concerned about raised bp / pulse and blood sugar - i feel like i'm being set up to fail

It took me all my time to smile sweetly through gritted teeth and reply that i was taking responsibility for my health and trying to make sure i give myself the best possible care i can. Guess this is gonna be a long road to travel...... Wondering if it's worth going private or just jump to self medicate cos i don't think anyone is gonna listen to me. Will get next lot of tests done to see if my recent increase has improved the numbers and continue on this journey ******""

****Original post ****

Hi everyone , since i last wrote to you all, i've felt so ill, stabbing pains behind my eyes, burst veins on my face. Hand and feet cramps, dreadful tremors just to name a few. Been checking my temp daily its mostly 33.4 c to 34.5 c yet i feel like i'm burning up. Blood pressure slightly elevated to 135/ 87 - up but to be expected as Levo is known to raise bp .

Waited so long for these dna results and it says that whilst i wasn't genetically at risk of thyroid disease or hashi's i do have faulty DIO1 & DIO2 . as others have said in their posts, the correspondence suggests we may benefit from T3 / T4 therapy. Anyone had a plan of action that actually persuaded their Gp to prescribe T3, or do we still come up against strict opposition ?

I go to Gp tomorrow and i'm so full of brain fog, i know he's going to make mincemeat out of me, your help will be much appreciated.

[SlowDragon Administrator]

Only an NHS endocrinologist can prescribe initial T3 trial alongside levothyroxine

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

thyroiduk.org/tuk/About_Us/...

An alternative may be to go via private route...especially if NHS consultant also does private consultations

[ferretmam in reply to SlowDragon]

Thank you, had a feeling that maybe what i needed to do x

[mandyjane in reply to ferretmam]

I have anew ploy up my sleave for dealing with doctors that I plan for when I get my genetic results and that is too avoid trying to educate the doctors and ask them to educate me instead. So I plan to tell, email my GP to say that I have these results but really dont know what they mean and ask if I can come in later in the week so he can explain them too me ( this means as doctors dont like to look stupid that he will look up the D102 and D101 and find out about it for himself so he is not put on the spot and un able to come up with something during the appointment). I wonder if this might help you.

[Lora7again in reply to mandyjane]

Good plan ... I actually took some information that Thyroid UK told me to print off to show my GP and he would not even read them so I have now given up.

[ferretmam in reply to mandyjane]

Good idea, i need to try and get on good terms with that guy cos this thyroid thing isn't going away any time soon

Will print off my report and ask him to help me with it, might even stick some sticky note questions on it to prompt me about really relevant answers i need. Thank you x

[McPammy]

As you’ve tested positive for T4 to active T3 poor conversion now. I’d request that your GP gives you a blood form for T3, T4 and TSH. He may have to hand write T3 on the form along side TFT test and sign it.

This is what my GP does. I am DIO2 gene positive and also my blood results confirm I’m hardly converting. Without enough T3 in your system you’ll be severely compromised.

I also requested that he scanned my DIO2 test results report and put on my NHS file. He did this. I’ve got Patient Access so I’ve checked this.

I get my T3 medication on the NHS now. It was finally authorised after a bit of a battle with my NHS Endo. I had a private 3 month trial on T3 medication and it’s been nothing short of a miracle, from couldn’t walk 10 steps without T3 to walking 10 miles with T3. And losing loads of weight I put on last year. I have Hashimotos and was on Levothyroxine only for 11 years and had many issues then. Now I feel 10 years younger.

First steps get your T3 checked along with T4 and TSH and take your results to a private or NHS Endo. Private Endocrinologist worked for me as NHS still are extremely reluctant to prescribe T3.

[ferretmam in reply to McPammy]

Thanks for that info, i'm really struggling today so will write myself a nice note regarding all these points ( though i don't know if i will remember where i wrote it later...... Batty as *#** today 😂 !

I need this sorting, i know it destroyed a lot of my life, been borderline for so long. I'd at least like to have a few years feeling good, i've not been truly happy since i was about 14 years old. Will see what he says today and perhaps push for Nhs Endo or actually i might just go private depending on response i get today. If he tries to brush it under the carpet i will take a guess at that being this areas policy regarding thyroid problems x

[McPammy in reply to ferretmam]

DIO2 gene test also indicates mental health issue like bipolar. My younger sister has mental health issues but she won’t do the gene test. Only a endocrinologist or a psychiatrist can prescribe T3 medication. Just something to consider. I’m not saying it might be effecting your mental health but it can do.

[kiefer]

There is a whole other aspect of doctoring that is rarely talked about but it is just as important as determining how knowledgeable the doctor is: Liability and consensus thinking.

LIABILITY

If a doctor thinks his license might be at risk for prescribing thyroid medication such as T3, then he simply won't do it, but instead will give reasons why you don't need it. This is a complete smokescreen. You think it's about you, but it's not...it's about him. Get past his fear of liability and you're HALF way there.

"Doctor, is there something you're afraid might happen if you prescribed some T3?"

"Doctor, are you concerned about your liability?"

CONSENSUS THINKING

The second hurdle is how concerned he is about what other doctors think. If he's the only one prescribing desiccated thyroid or T3, he's going to have trouble referring a patient to an endocrinologist. Why? Because the endo has to make a choice: Either reject the referral outright or change the medication back to T4-only, because, after all, he has to look right with all the other endocrinologists who ONLY prescribe levothyroxine.

"Doctor, are you concerned about what other doctors might say?"

You can see that it's way more complex than a doctor being ignorant about thyroid disease and its treatment. All the bravado and bluff he gives you as to why you can't have T3 is REALLY about his fear of being reprimanded by the board of medicine or excommunicated by his peers. How am I so sure?

Doctors have the authority to prescribe drugs for unlabeled uses and they certainly have the right to prescribe whatever thyroid medication that works for the patient. He roars like a lion with most medications but acts like a mouse when it comes to thyroid treatment.

You have to call him out on this dichotomy.

NEGOTIATE

Don't attempt to educate a doctor. They don't like it when a patient comes in with their favorite book. Doctors are supposed to always be the more educated person in the room. But if you can convince him that you have his back and won't raise his liability by going off and having a heart attack because you took too much T3, he'll be more likely to work with you. Offer to monitor your vital signs (BP, HR, temp, Respiration) and provide him with a written report.

"Doctor, what will it take for you to trust me that I won't increase your liability?"

I know this perspective won't be popular but I've tested it out and it's true. You just have to have the courage to ask the tough questions and get over the fear of being fired by your doctor.