Intolerance to T4

[jan61]

Hello all.

Are there any of you that have a complete intolerance to T4? And if so have you managed to figure out why you cannot tolerate it?

Thank you in advance.

Xx

[McPammy]

when taking T4 if I take my full dose in one hit my legs start tingling and then I lose all the strength in them. My Endo prescribed liquid thyroxine for me. I now split my dose also. Take half am and half pm. My legs don’t tingle anymore but the strength issue still remains but it not as severe as it was. I have recently been diagnosed as poor T4 to T3 conversion and waiting for my T3 medication to arrive from Germany. Maybe liquid thyroxine could help you. It’s a little expensive but you could try it for 3 months and see if you can then tolerate liquid form. It has no additives.

[jan61 in reply to McPammy]

Thank you for replying

When I take t4 I feel like I have the breaks slammed on me and I cannot function, energy gone and breathing is more laboured esp if I try to do anything. It helped my hair and skin though but ended up registering high in my blood and my weight just ballooned. Xx

[McPammy in reply to jan61]

You could be describing me here!! I too use to take it then within an hour it was like you say the brakes slammed on leaving me unable to function. I mean really bad. I had to lay flat for most of the day from June to Oct last year. No Dr would or could help me. I kept saying it’s the Levothyroxine!! They said it was impossible. I said it can’t be. So I stopped Levothyroxine for a week. All my symptoms went away. I could walk and function normally. Then I had to reinstate Levothyroxine. I only took 25mcg on first day. Again the brakes slammed on. I got taken to hospital as I couldn’t get off the floor. My TSH went to 28 in a week. I was eventually put on NDT but still had similar issues. After 3 months of NDT I realised as it has T3 I should split it. Then I got a bit more better but still not right. I went private. He took me off NDT saying it wasn’t good and said I need liquid Levothyroxine. I was scared. I changed and went worse. Within 12 days my TSH went from 4 to 24. After 7 weeks struggling I got bloods done again. TSH now 5 T4 14 but T3 very low 3.9. So eventually he prescribed T3 which I still haven’t got. It’s in the post. A year has gone from my life and I’ve lost my job. NHS has a lot to answer for with this T3 pricing issue.

Sorry for long message. I just can’t belive why they don’t believe us!!!

I hope your ok. X

[jan61 in reply to McPammy]

Would you mind if I copied your message to the ITT action group please as they haven't been able to find anyone that reacted the way that I did. I know they would be interested to know theres another one like me. Xx

[McPammy in reply to jan61]

Yes please do. I have and am reacting like yourself.

A year later and I’m the same. I have to tread very carefully with Levothyroxine. I scared of it as I know what it can do to me. Some days I’m like a zombie and end up collapsing, almost like I’m having a stroke.

I was on Levothyroxine for 11 years previously and never had problems like when it started a year ago. It started to go very wrong when my GP increased my dose. My T4 was already near the top of the range. My TSH was raised. But of course he didn’t check T3 as they don’t here. It was probably my T3 being too low that needed to be addressed back then too as it is today.

Thanks. If you ever want to PM me I’m open to help and support.

Pam

[jan61 in reply to McPammy]

Thank you. Its an absolute disgrace. I'm so sorry you are going through all this

Yes I will pm you later.

Thank you

Xx

[Naomi8]

I was on thyroxine for 16 years.Frequently had periods of ectopic beats & episodes of fast heartbeat,later diagnosed as supraventricular tachycardia.I would have to lie down until my heart returned to sinus rhythm & would feel very washed out next day.beta blockers did not help.Energy levels were poor.

I now know,thanks to Blue Horizon Genetics,that I have inherited conversion issues from both parents (the DIO2 SNP)

I was on T3-only for 2 years.Now on NDT.Tried adding 25mcgs of thyroxine to it the other day(had a notion to make my replacement closer to human ratios of T4/T3)

had to lie flat(no pillow)for 3 hours with my heart going at DOUBLE speed.

I have read that long-term use of thyroxine monotherapy can lead to a worsening of any issue you have with it.That is my experience at 69.

[jan61 in reply to Naomi8]

Thank you for replying. Oh my goodness what we are all having to go through just isn't right. If I take t4 I feel like I'm being poisoned I can't function, weight gain, no energy, pain every where and laboured breathing. I'm OK on t3. It took a year if tinkering with it to get the dose right as I split it over 4 doses through the day. But now I'm having it taken away. I don't think the endos will listen to me even if I had a private test done for gene 102. Out of interest how much did it cost you? X

[MaisieGray in reply to jan61]

The gene to which you refer is DIO2 ie three letters followed by the number 2. You can have a test for DIO2 polymorphisms carried by Regenerus, but they will only issue your test result and report to your medical practitioner, which isn't much benefit if your GP isn't knowledgeable about such things. However, for an extra £65 they will provide an appropriate counsellor to interpret and counsel you. Blue Horizon doesn't have this requirement but their reports are somewhat confusing, so I'd definitely recommend opting for Regenerus. However, proving homozygous or heterozygous positive for one or other of the relevant SNPs is not a diagnosis - it indicates only that you have a common variant which may or may not affect you, and even if it does, it can't say to what degree. regeneruslabs.com/shop/prod...

[jan61 in reply to MaisieGray]

Thank you for replying.

That's what I was worried about that they wouldn't listen even if I have the test done. Thank you for all the information xx

[Naomi8 in reply to jan61]

The Blue Horizon test was on offer at £99,but I wouldn't attempt to convince an NHS doctor.I've had my fill of NHS GPs & endos.I bought my own T3 when the NHS cancelled my Rx.I found it better than NHS T3 & very reasonably-priced.

[jan61 in reply to Naomi8]

Thank you. Could you pm me the link where you get your t3 please as I've got a hell of a fight on getting t3 off him now to tide me over until I can sort myself out xx

[Naomi8 in reply to jan61]

Better to post again,asking members to pm you.I haven't bought T3 for over 2 years.I bought twice from northern Cyprus,then I was warned off ordering again,as things went pear-shaped.Then I ordered from Mexico successfully,but I do not know if that company is still functioning.

I have been taking NDT for over 18 months,as I can get T4 & T3 without touching thyroxine.

[jan61 in reply to Naomi8]

OK thank you. I will put up another post xx

[jan61]

Thank you for replying.

I felt it was toxic taking t4 but no one would listen I managed 7 months on it, gain over 3 stone, was bed ridden for most of it and had such pain like my body was trying to tear its self apart. Breathing problems and just no energy like the breaks had just been slammed on. I've been fine on t3 alone for 7 years and now they are taking it from me and insisting it couldn't be the t4 that was causing it. The face that I felt great off it despite my tsh being over 100 they completely ignore! Xx

[jan61]

Thank you for replying.

I've got the ITT action group behind me and health watch and we've fought for a year almost and its gone to house of lords and to parliament. We gave been the CCG route and mp and various other routes including a lead consultant over mine but he just will not back down and leave me be and has said he's refusing to issue any more now xx

[jan61]

He's a locum one and the one that prescribed it 7 years ago he died. We've gone down the chief exec route and I got a reply back just backing him and coming up with the most ridiculous stuff half of which wasn't true and just sided with him instead of investigating it properly. Xx

[jan61]

Thank you. We are in the process of sorting an email to them. Xx

[jan61]

Thank you and thank goodness for you all and your support xx