I have an underactive thyroid reading 18 I cannot tolerate levothyroxine even in small doses what can I do my health is failing and I have

[Alone]

Me/cfs is there anything else

[Glynisrose]

Your specialist or GP can prescribe NDT or synthetic T3 or liquid thyroxine if the fillers are a problem. In any case NO doctor should leave you I'll and un-medicated!! That is appalling!!!

[Jackie]

Hi As above but also it may be an underlying problem, in my case my pancreas, not drink! Auto immune. Would you like to expand on the question, ie what symptoms does it cause etc. My Endo first choice is T4 ( levo) and T3 ( if shown by bloods to be low) , second choice NHT, third choice T3 alone, not ideal!

best wishes,

Jackie

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[lolajone in reply to Jackie]

Jackie do you mean that t3 alone is not ideal, asking because that is what I have just been started on and have to say I'm not feeling good? Thanks

[Hidden in reply to lolajone]

It's not ideal for living with, but if you need just that, you can live fine on it, plenty of people have... just with multiple dosing needed and levels going up and down it's harder to handle to feel right, compared with the other options so would not be a first choice.

I was on T3 only for some months just fine, but I found it a chore, I was best on splitting the dose at least 4 times a day, and have heard of some people dosing 5 times a day, but that's hard to manage due to sleep!

[lolajone in reply to Hidden]

Thanks picton. It's a 6 week trial because I felt like thyroxine was poisoning me and gp agreed it wasn't suiting me.... The 10 year plus saga continues. Anyway he upped the dose yesterday to 60mcg which I split into 3. Felt like death this morning but ding ! After your answer its hit me that it was probably too long since last dose last night. Switch on brain of mine

[MaryMary in reply to lolajone]

When I changed to to t3 only I had 8 weeks of feeling worse - it has been suggested that it takes that long for the t4 to fully leave the body so keep going!!!

Mary

[Hidden in reply to MaryMary]

That was what I took it for... to drop Reverse T3, it took a bit over 12 weeks for me, went a bit hyper then I had to drop the dose about 20mcg a day to steady out again. Was ona it a couple of months after that before weaning off. Sadly the reverse T3 largely returned, and hypo symptoms returned - I can't get rid of the cause of RT3 (probably the chronic pain and osteoarthritis) so on NDT, reasonably steady now.

[MaryMary in reply to Hidden]

Hi Picton, I went the opposite, could hardly climb the stairs, was like a zombie! Pleased to hear that you are feeling a bit better.

Mary

[Stourie in reply to lolajone]

When I was on t3 only I used to take it at bedtime 60mcg. Slept all night and felt fine all day until the bother with the t3 that is being checked by mhra for strength.

Jo xx

[Jackie in reply to lolajone]

Hi Most Endos including mine only use T3 if T4 + T3 not good, and then NDT neither, Then the last choice is T3. Also always split the dose, aim for 12 hours apart. and start lower than prescribed for at least a week.I cannot take Levo, so I have to have armour, NDT, just as important to have all the bloods done, however, my FT3 still too low for me, I need it near the top of range, so since it was produced, I went onto less armour and some T3. T4 and F3 are easiest to balance, but on everything bloods and how you feel are vital for safety. Hypo can sometimes have identical symptoms to Hyper, only the bloods tell you that,

[storm]

I am just over a month on Levo/T4, I was just wondering how long did you try T4 before establishing unable to tolerate, I must say I am not finding it plain sailing, but sticking it out, as fairly new to this, but after 5 or 6 weeks I have been taking, I have thought

I am worse on it....but then many people say you do get worse before better Ooer! I just know I can't be left without, as my results were 'grossly hypothyroid' TSH over 100 and anti bodies over 2100....I also have likely M.E./CFS for umpteen years before thyroid went.

[Stourie in reply to storm]

It can take months to improve on levo. Bloods should also be checked every 5 or 6 weeks to see how you are doing.

Jo xx

[storm in reply to Stourie]

Thank you, this is all so messy isn't it!

[Jane104]

Have you tried different makes of levothyroxine? I can't tolerate MercuryPharma levo at all but don't have a problem with Actavis for example. If you can't tolerate any of them and your gp is unwilling to help, you need to ask to be referred to an endocrinologist who is willing to prescribe an alternative, or find another gp.

[storm in reply to Jane104]

I have, but not been on Levo long, I was thinking the Actavis makes me worse, but might be the change in brand, so hard to tell when feeling bad, then you get worse on levo (apparently before getting better..hmmm)