Hi all
Just to clarify I'm on 150mcg of thyroxin and been hypo for over 10 yrs. recently became very unwell with hypo symptoms again, all the usual joint pain, sickness, unexplained weight gain, depression I could go on and on. I'm not tolerating the thyroxin suddenly feel very unwell taking it.
TSH >100
Serum free T4. 6.4
Serum free T3. 2.0
Due to see Endo at QE end of next month.
Any input will be gratefully received
Cheers guys.
Is you TSH really over 100 - thats mighty high and you must feel dreadful. You haven't given the reference ranges for your FT4 and FT3, but if I go by my labs ranges both are below range, especially your FT3. My labs ranges for FT3 are 3.5-6.5. You either need an increase in T4, or you need some T3 added in. Your body hasn't got much T4 to work with even if it is converting it okay.
What did your doctor say to those results, surely he/she is not making you wait until the end of October to see an endo before doing something.
I was on T4 only for about 6/7 years and all was okay. I suddenly became very unwell again with TSH up to around 44 and high antibodies but an increase in T4 didn't help. To cut a long story short now under an endo who prescribed T3 and things are improving slowly. I was low on Vitamin D and B12 as well. Have you had any other tests done for things like iron, ferritin, folate etc.
hi jan4363 you mention vitamin D and B12 what where your levels and what are they now i hope you dont mind me asking as i am confused mine where vitamin D 17 now 32.5 my b12 where 276 ,722 and now 648 do you know what they should be and why they change so much ?
Hi Suki, no I don't mind at all. My Vit D was 37, been on 800IU D3 and it has risen to 98.2. My B12 started at 385, is now 475 on 1000mcg of B12 methyl. All latest tests done in July. From my ranges the upper limit for Vit D is 150 and the upper range for B12 is 900 but of course these ranges changes with different labs. Any test is just a snapshot in time, so the only thing I can think of is that these would naturally flunctuate. Hope this helps
yes thank you it helps my doc said my b12 when it was 276 is normal but i disagreed as now it is up to 648 and i am feeling alot better but my doc is worrying now that it is too high do they really know i have a book that says it should be between 450 -1100 i think i will go with that thank you for the info
The only comforting thing about B12 is that you are unlikely to overdose. It is a water soluble vitamin and any excess will be passed out in your urine. This is not the same for Vit D - it is fat soluble - and hangs around, so best to keep an eye on that so you don't go over range.
so the top end of vitamin D is 150 mine is only 32.3 so that is fine .
i never had any troubles but in 2011 i had to go on statins for life they said i tried 3 different ones and have been on and off them for 2 years now my body is a mess i have had to take so much medicine and vitamins its been weird my left arm is useless at times and my thighs have changed shape the muscle drops ,and i get swelling to back ,ankles,knees and my bones are sore on and off ,no one will admit statins have played a part if not all but i am 49 never been ill like now and i have had 5 children seems strange ,but now looks like i have to pick pieces up but i am learning lots thank you jan4363
Thank you Jan4363
Sorry I'm new to all this as I've never had any problems before.
Yes, TSH now over 100
Range for T3 is 2.60 - 5.70pmol/L
Range for T4 is 9.00 - 19.00pmol/L
TSH is 0.35 - 4.94mu/L
Hope that makes sense.
Yes he's leaving it till I go to see Endo as he said he's in the dark as to how to proceed.
Which is no good for me as I do feel rather poorly, even thought about going to A&E in sheer desperation.
No other tests were done regarding vitamins 
Yes, it all makes sense but you are still very short of T4 and T3 so its no wonder you feel so awful. Well I am astonished that your doctor has said he doesn't know how to proceed, what does he think reference ranges are for and couldn't he see that you are below range on both T4 and T3.
I can well understand your desperation which is made worse by the lack of action by your doctor, just left you to get on with it for another 5 weeks or so - disgraceful.
If I were you, and this is only a suggestion, I am not a medic just another patient, but there seems plenty of room for improvement in your levels, how about adding some more T4 every day, say 25mcg, see how you feel for a couple of weeks and then perhaps add another 25mcg. If your T4 level was high and your T3 low I would say you weren't converting very well but you may well be converting okay if you had more T4 on board.
Heavens, with results like that no wonder you feel ill. Can you contact the hospital and ask for an earlier appointment? They cannot leave you a month without doing something. In the meantime perhaps your GP would do blood tests for a full iron panel, B12, Vit D. I am sure there are other things but that is a good start. Good luck. Hope they so find out what is going wrong.
Thank you both for much needed support.
I'm on 150mcg of thyroxin any higher and I have really bad heart palpitations which frighten me as my mom died of heart failure.
I've been in touch with hospital and at first wouldn't take ranges over the phone but have agreed to phone doctors for a copy and to ring me back before my apt.
Will ask GP to do other bloods to check iron, B12 etc.
Will keep you posted
I can really understand where you are coming from on that, hang on in there and I hope you get an earlier appointment, its such a long time to wait when you feel so bad. Good luck
Thank you Jan, it's great to have someone on my side 
Don't blame you for feeling desperate, Desperate. Sometimes adrenal disfunction is the basis for return of hypo symptoms and the inability to raise your dosages without side effects. Perhaps you need some adrenal treatment. T3 has been said to heal adrenals. stopthethyroidmadness.com/a...
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