Just received my new blood test result, having been on 50 mcg Levo for 8 weeks. Doctor has not called to discuss, I checked online to see if they were in.
Test has come back ‘normal’ although I am still having real issues with my digestive system. They only redid the FT4 and TSH as the vitamins were done a couple months ago. SlowDragon has already commented that Vit D and B12 are low on a previous post, could those be affecting my digestion?
My ‘normal’ test results are FT4 : 7.8 (7.7 - 15.1), TSH: 3.90 (0.34 - 5.6). The TSH has come down a way from a previous 6.38, my previous FT4 was 7.3.
I know the Levo can take a while to work but I was a bit dejected to see no further action necessary as I don’t feel better! Maybe I am just impatient, I guess the drugs are working!
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Xmrkn20
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1) make an appointment to discuss you results . don't let the receptionist fob you off with 'not needed, they are normal' .. say your symptoms are getting in the way of work and you need to discuss your dose with a Doctor .
2) Point out how pitifully low the fT4 still is , and say you'd like to try an increase dose of 75mcg to see if symptoms improve when fT4 is better and TSH is closer to 1.
3) Keep this list up your sleeve , healthunlocked.com/thyroidu... my-list-of-references-recommending-gp-s-keep-tsh-lower-
contains several references advising GP's to keep TSH below 2 ish when treating with Levo (some written specifically for GP's by endocrinologists and cardiologists ) .... just in case GP does not respond to a perfectly reasonable request for an increase to 75mcg .
4 ) make sure you get a repeat blood test to check the effect of 75mcg after minimum 6-8 weeks ,but no longer than 3 months . Don't get fobbed off with come back in 6 months .
Hope that is helpful . Written in hurry .. sausages nearly ready .
thanks tattybogle . It’s silly to feel dejected I guess, as the results do show the Levo is having an effect. Suspect the doc wants to see how it goes but I agree with your recommendation to talk it through. I need another prescription anyway and will def get another test in 8 weeks, regardless of whether they raise the dose or not.
"suspect Doc want's to se how it goes".....He's seen how it goes .
8 weeks is well long enough to asses TSH and fT4 response to 50mcg dose .. and the fT4 plainly says 50mcg is nowhere near enough. You won't get much better with FT4 : 7.8 (7.7 - 15.1), TSH: 3.90 (0.34 - 5.6) , no matter how long you wait .
Much more likely he/ or whoever got the result to check , just looked at the numbers ~saw they were 'in-range' and ticked the box marked 'normal no further action' without even remembering who you were.
tattybogle so the result won’t continue to improve with 50mcg? Sorry, I’m new to all this and had read that it can take a while to see improvement, so thought maybe the fact it had improved in 8 weeks meant it would improve even more. I have asked for a higher dose, awaiting response!
TSH/FT4 levels/ and symptoms not likely to improve much after 8 weeks while still on only50mcg .
The hypothalamus & pituitary can sense the T4 levels that you have got from 50mcg of Levo~ (Levo is just 'synthetic T4' to replace the T4 your thyroid wasn't making enough of)
The fT4 test is accurate for a 50mcg dose within approx 2/3 weeks .. and it then takes the TSH up to 6 weeks to settle on it's 'opinion' about this dose .
Your relatively high TSH is now saying that the level of T4 is not enough for you , because TSH stays over about 1 (ish) when the hypothalamus & pituitary are sensing your body needs more T4.
You are correct.... it does take a long time to treat and improve hypothyroidism , but the reasons for 'why' are :
First .. The TSH .. (this is just a message from the pituitary to the thyroid to ask for more / less thyroid hormone (T4/T3) to be produced) ..... TSH is relatively slow to respond to changes in the levels of T4 /T3..... So to get a 'true' reading of TSH for any dose of Levo, we always need to wait AT LEAST 6 weeks after starting /or after any change of dose.
Second.... Finding the right dose/ 'sweet spot' for the individual takes time. If you start on too high a dose it can complicate the picture thus making it take months longer overall to find the 'sweet spot.' Hence it is usual to start at a relatively low dose and gradually increase the dose in stages until you find the best place.. this IS tedious, as each increase needs at least 6 weeks to show in the TSH result .. but in practice is often quicker than 'going in too high' and then having to reduce and start all over again.
Third .... The cells in all the organs in the body that have been struggling before diagnosis (without enough T4 /T3 to allow them to function/repair themselves properly) These can take a long time ( months) to get better and all start functioning properly together again . Not everything gets better at the same rate so some symptoms improve over weeks , some improve imperceptibly over months / years. This mainly applies once the right dose / sweet spot has been found , so in some ways you could say the recovery only really 'starts' once the sweet spot has been found and the cells are all consistently getting enough T4/T3 .. (or as close as you can get when replacing hormones ' manually' ~ you can never exactly replicate a fully working thyroid/ HPT axis )
Fourth .. Feelign a bit better then a bit worse again (each time doses are increased until the right dose is found). ~ Adding Levo lowers the TSH ~ the lower TSH then lowers your own thyroid's attempts at producing T4/T3 ~ so:
(very oversimplified example) if your body actually needs '100', and your thyroid was only making 50 and you add 50 from levo , then initially have '100' , but then after a few weeks the thyroid reduces it's production to eg 25, so then you only have ' 75' this carries on until the complex system has balanced itself and the dose stays the same. This often results in people who start to replace thyroid hormones feeling a bit better for a few weeks / months on a dose and then feeling less good again until the dose is increased . ,,, until hopefully they stay feelign ok when the dose is right .
Hope this helps you understand why sometimes "wait longer" is absolutely the right thing to do...and sometime it isn't ... eg:
~ after 8 week on starting dose of 50 = don't wait longer ., get on with it, finding the right dose already takes long enough , no point prolonging the agony more than is needed,
~ but once dose is 'about right' eg. TSH is 1ish /fT4 level is reasonable .. then waiting another 3-6 months to allow for any further improvements in symptoms to catch up to 'bloods' is probably a very good idea .
SlowDragon Just been reading about T4, T3 and TSH as I still didn’t quite have a grasp of how they all relate. The article says T3 is the one that has an impact on digestion but the doctor doesn’t test that. Do you think it’s worth me getting a private T3 test?
No you need a dose increase there is huge room to accommodate 75mcg and most likely you’ll need at least 100 mcg.
TSH 0.25 -0.5 and t4 and t 3 in upper third of their ranges is what your GP should be aiming for. You are miles off, that’s why you still feel so poorly. The idea of the medication is to alleviate symptoms not tick number boxes that are plain stupid and incorrect. Any where in the range is not optimising the dose, it’s plain sloppy, lazy doctoring.
I have the same problem, a particular gp at the practice files everything away as no action. Last time this happened, because he's the only partner at the practise they refused to go against him although my TSH was over 4 and out of range, and my T3 dropping, I had to get the nurse to agree to book me another test in 2-3 months instead of a year but they wouldn't discuss the results. Unbelievable, when you are on a pathway of increasing dosage. After another 9 weeks on too low a dose at 75mg and my TSH shot up to well above range again so I got my increase. Then they all puzzled ' it shouldn't do that'. Problem is they put my recovery behind and backwards. Don't let this happen to yourself xxxxx
Sorry you’ve had similar problems. I battled with my GP who flat refuses to increase my dose over 50mcg, just keeps saying the test results say I’m normal. I’ve resigned myself to another 8 weeks of feeling unwell, I will then do a private blood test and demand to speak to the GP again. Am hoping after a further 8 weeks the test won’t be ‘normal’ any more but we shouldn’t have to prolong symptoms to get heard 😕
As it's always a different person calls up it's not easy to get anyone to read papers on low TSH. The triage system that starts at reception seems to mean that they decide if you get an appointment, phonecall or just a message to say go away 😟. When they wouldn't increase my dose I asked for call back, or appointment to discuss 3 or 4 times, but they just closed it off each time, I really wasn't expecting that. I think now I'm on a reasonablish dose of 150mcg, I'm doing a private test after about 10 weeks to give myself a clue whether I'm back to 4 or 5 and wil have same problem again!
so frustrating. I just feel shattered at the moment, not sure I can wait another 6 weeks! May do the test in a couple of weeks and see what it says. Suspect it’ll still be a battle but will be more insistent this time, I work for myself so can’t afford to be ill!!
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