Need advice on getting some t3 added to thyroxi... - Thyroid UK

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Need advice on getting some t3 added to thyroxine please

CarolineAnne profile image
20 Replies

Hya everyone,

This is on behalf of my brother. He is on 100 mcg thyroxine and his last tsh was about 6 ( from memory ). He is on the journey of titrating up to his optimal dose and has another couple of weeks to go before an increase. He is feeling awful. Tired, irritable, anxious. We've checked iron, vit b12, d etc and they are good.

He has asked his gp to send him to an Endo but she refused. He was going to go private but has put that off for now. He wants to try a little t3 to see if that improves things but his gp was resistant last time he approached the subject. He does not feel any benefit of the 100 mcg thyroxine and feels much worse now then before he started thyroxine.

He has always been quite slim and since being on the thyroxine has put on weight and is looking quite chubby.

He is self employed and struggling to keep his business going. He is worried that it is all going to crumble.

Does anyone know how he could persuade his gp to add in some t3 or would he have to see an Endo?

Thanks in advance

Carolineanne x

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CarolineAnne
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20 Replies
Moggie profile image
Moggie

Firstly, I know you said that you have had iron, VitD etc checked and all were good but have you got any results you can post on here as what his GP might say is good will be insufficient for a thyroid sufferer. I ask you to post your brothers results because if I had been given the correct tests (especially iron) and they had all been at optimum levels for a thyroid suffer I would never have had to take T3 and would never have suffered the heart problems it caused and I only started taking T3 because, like your brother, I felt awful on T4 and my GP was refusing to test things like vitD, B12 and in particular (which is the one that I think caused the most problems) ferritin. Since correcting all my vitamins my 100mcg's of T4 is now working to it full potential and I feel fine.

I managed to persuade my GP by telling her that I would have to give up my job (or in his case his business) unless my health improved.

Please post ALL his latest results (with ranges) including his last TSH test and people will comment.

Moggie x

CarolineAnne profile image
CarolineAnne

Thanks Moggie.

I will post them. But just to let you know I didn't just take the doctors word for it. Lol ! I have been in this thyroid game for 9 years myself unfortunately and have read and researched much in that time so I felt that they were ok.

Best wishes

Carolineanne x

Moggie profile image
Moggie in reply to CarolineAnne

Glad to here it - I have a link that explains why, in certain people, thyroid medication is not taken up by the cells but stays pooling in the blood, would you like me to try and link it to you to see if it rings any bells.

Sorry if my first answer was things you already knew but on here, unless you state otherwise, the basics are always the first covered.

Moggie x

jjlily profile image
jjlily in reply to Moggie

Hi Moggie I would love to see that link Please

Jill

Moggie profile image
Moggie in reply to jjlily

Since this site has changed me and links don't go together very well but I'll have a go.

nahypothyroidism.org/thyroi...

Moggie x

jjlily profile image
jjlily in reply to Moggie

Thanks Moggie

Link works perfectly.

Very interesting have bookmarked it for reading properly later

Jill

CarolineAnne profile image
CarolineAnne in reply to Moggie

Thanks Moggie for the link. Sorry I was trying to leave out info that i thought I had covered but i can see that Its difficult to advise unless you have got all the facts.

Anyway he's gonna get me everything later when he gets home from work.

Thanks again

CA x

Moggie profile image
Moggie in reply to CarolineAnne

Maybe ask a new question with his results just in case it gets lost on this one - just a suggestion, and glad I could be of help - well sort of.

Moggie x

CarolineAnne profile image
CarolineAnne in reply to Moggie

Will do x

shaws profile image
shawsAdministrator

If you email louise.warvill@thyroiduk.org and ask for a copy of Dr Toft's article in Pulse Online. Under question 6, he says some people need a higher dose of levo if still unwell, or the addition of some T3 to a reduced T4. He also states the TSH the GP should be aiming for and it is under 1.

CarolineAnne profile image
CarolineAnne in reply to shaws

Thankyou. I think I've got this saved somewhere! Will try to find it.

CA x

shaws profile image
shawsAdministrator

If you email louise.warvill@thyroiduk.org and ask for a copy of Dr Toft's article in Pulse Online. Under question 6, he says some people need a higher dose of levo if still unwell, or the addition of some T3 to a reduced T4. He also states the TSH the GP should be aiming for and it is under 1.

PatientPower profile image
PatientPower

When I was first put on T4, by that time barely able to function, I only felt about 10% better, and the higher the dose went, the worse I felt. I tried T3 alongside but it didnt really seem to change things. Via a series of tests thru a private metabolic illness specialist (ex GP fed up with NHS) I discovered that I was not able to process T4 into T3 therefore the added T4 was just making me toxic. I switched to natural full spectrum thyroxine (has T1,2,3,4) - bought from the US,not very expensive - felt 85% better within 24 hours and now have my life back. NB in the absence of GP support I established the correct dosage for myself using Resting heart rate (taking pulse on waking) and morning temp, and also scales I made up for myself such as 'wellness' and 'anxiety' levels. As it happened, the right level for me was the dose they had started me on with T4, 50 mcg. When I went back to GP to be tested my levels were good, but more importantly i no longer felt ill. Doctors risk suspension in the UK if they prescribe natural thyroxine so can't really blame them, the problem goes much deeper into Pharma-control territory, if you look into the history of Levothyroxine.

ChristineNeil profile image
ChristineNeil in reply to PatientPower

Could you pm me the website in the US please for Thyroxine?

PatientPower profile image
PatientPower in reply to ChristineNeil

sorry i put my reply into the main thread - hit the wrong button!

shaws profile image
shawsAdministrator in reply to PatientPower

The NDT you are taking is equal to 65mcg for 1 grain.

PatientPower profile image
PatientPower in reply to shaws

According to the bottle, 1 grain represents 65 mg not mcg of thyroxine - my point is that the T4 content of 1 grain is listed as 38mcg, so 1.5 grains contains 57mcg of T4, roughly equivalent to the dosage of synthetic T4 I was originally prescribed by my GP .

shaws profile image
shawsAdministrator in reply to PatientPower

Yes, I understand that but this is a conversion chart of the approximate equivalent strengths. I assume because the T3 is the active hormone:-

thyroid.about.com/library/d...

ChristineNeil profile image
ChristineNeil

Thanks for your very informative reply and I will certainly keep trying for a solution. Keep healthy! Thank you x

This thread has been edited in line with our Guidelines:

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