Grrr, wait months for appointments and tests and they mess it all up! Any explanation of TSH please????

[DeniseR]

I'm so frustrated - again!

I had to wait 4 months to see my endo again and then when I had my appointment, I had to see his registrar as he was on holiday!! The registrar admitted he had no answers for me and had only worked in the department for a year, so didn't have enough knowledge to help me, after I questioned everything he said so he had to back track. Was then told I would have to wait for my endo to return and the info would be passed on to him and he would then contact me. He should have returned over a week ago and I have emailed and not even had a reply.

The appointment was a follow up and to decide if I could increase my T3, as I had started to take 2 x 10mcg per day instead of the prescribed 10mcg, along with my 50mcg of T4.

So, I took the initiative and got a blood test whilst on the higher 20mcg dose, then reduced back down to 10mcg and had to wait 8 weeks to have another blood test which the endo ordered.

Just been in to collect the results and they haven't tested FT3 or FT4. Now waiting for the 'know it all' aged 12 receptionist to call me back to tell me whether the tests have been done or not, which she won't be able to tell me because only the lab will know but as she ignored everything I've said, she's checking anyway.

Sorry to rant but why can't these people actually do their jobs, even when I'm trying to make it easier for them????

Anyway, I only have my TSH to go on but am confused as to the rise, so any ideas on results would be helpful. thanks.

July 2012 T4 100mcg

FT4 15.7 (10-23)

FT3 4.5 (3.5-6.5)

TSH 0.13(0.35-5.5)

Sept 2012 T4 50mcg T3 10mcg

FT4 12

FT3 not done

TSH 0.14

Jan 2013 T4 50mcg T3 20mcg

FT4 11.3

FT3 5.1

TS 0.07

Mar 2013 T4 50mcg T3 10mcg

TSH 1.46

[Jackie]

Hi First of all ,you do need to leave 6 weeks normally between thyroid tests, if altering the drugs. Without ranges not easy to say. As a rough guide most of us need T4 top third of range and Free T3 towards the top of range, on treatment,. T3 does make the TSH go lower, often unmeasurable, only brave endos will treat with T3 if TSH too low, ie below range. It does also depend on how you feel, alterations in doses are normally slowly ,on blood results etc. I hope this gives you some idea. make sure you have all the ranges, hospital and GP, when you have any ( not just thyroid ) test as a lot do vary.

Best wishes,

Jackie

[DeniseR in reply to Jackie]

Hi Jackie

Thanks for your reply.

Sorry I should Have said, all ranges are the same as given on the first test results. Also my GP said that they would not test until 8 weeks after the last tests, so I had to wait 8 weeks, which I did. I've now been told by the nurse that the lab have said they didn't do the FT4 or FT3 because it wasn't requested on a hospital form, even though they had seen the request and consultants name at the top of the Gp's form. The nurse said she'd never heard of this being the case but to be honest, it doesn't surprise me.

My TSH did go down when I started with the 10mcg of T3, which I expected and then dropped further when I increased my dose to 20mcg, which again I expected. What I'm not sure about, is why, when I decrease my dose back down to 10mcg, it still wasn't low but in-fact has increased much more, to the point of when I wasn't on T3 at all.

Could this be the proof I need, that I need an increase as my symptoms began returning after a while on T3???? Has my TSH increased this much purely because I now need more T3 and if so, why would this happen? I'm also waiting for the endo to explain to me why the T3 worked so well for a while and then my symptoms started returning gradually, as he said I didn't need an increase previously and the registrar had no idea and admitted he couldn't answer this question.

Thanks again, Denise

[Jackie in reply to DeniseR]

Hi I am not too clear who requested the tests this time.I would ask who ever it was, e mail the consultant via the secretary,y. or email the GP.. You could try GP first anyway.I think your T4 much too low. Treating the T4 should not alter the TSH ,it is T3 that does. It can go lower but some endo`s are reluctant and a lot of GP`s, that is applying to T3 treatment only ,not the T4.I would say that you definitely need more T4 treatment anyway. I am not sure how long you have been on treatment ? it usually takes about a year, to feel OK and bloods acceptable.When we start treatment it is quite common to go down again after a bit and then need more higher doses, on blood results, it should be done like this as very strong drugs. I would say that your T4 is converting to T3 Ok and you may not need much or any T3. T3 is normally started after T4 and depending on TSH Ft3 and T4 results at a retest.My endo and i have to ignore my TSH as it has always been too low. I have Hypo, Hashimotos.I hope this helps.

Best wishes.

Jackie

[DeniseR in reply to Jackie]

Thanks again Jackie for your reply, i really appreciate it.

The endo wanted me to take another test after dropping my dose back down to 10mcg, so it was from the endo but I can have bloods taken at the GP surgery, the tests are all done at the hospital either way. It's too late to have ot re-done now as I've increased my T3 again already, have emailed the endo for the 2nd time and will wait to hear what he says.

My T4 has dropped slightly since being on T3 and somebody said this is quite usual and it doesn't matter too much as I'm on T3.

I've been on T4 for over 3 years and was just getting worse, I did try to increase it myself but it made my hypo symptoms worse. That's when the endo said he thought I had a reverse T3 issue and to try me on T3.

I felt amazing for a few months and thought my problems were over but then my symptoms started to appear again( although I think I did overdo the exercise a bit). So now just trying to get back to feeling good again, although I am definitely much better with the T3 than without, I'm still not quite there.

I would like my endo to ignore my TSH but he wasn't happy about me upping my dosage so I dropped it back down and had my bloods done as he requested, however now I can see my TSH has gone from 0.14 to 1.46 on that same dose. I think I could even have more T3 depending on bloods now but will wait to see what he says.

I really just wondered why my TSH might have changed on this same dose? As you say, i think I need to increase my dose until I feel well again but don't think the endo will be very flexible on this

[Jackie in reply to DeniseR]

Hi Knowing a bit more of your background re thyroid, I think you are right. You will be limited I expect by the endo, not many are willing to stick their neck out re TSH.Are you sure you tried enough T4? I cannot take thyroxine and have always had to have armour but I was on a huge dose with a private thyroid doctor. My TSh has always been too low to measure , and my FT3 was below range. When I changed to a good endo we reduced my armour to 2 and a half grains and then when T3 became available I had that as well, 20mcg. My FT3 and T4 is now good but of course my TSH not!!However I do have to have my armour on a private script which is expensive and I have NHS T3, not many can have armour NHS, even if allergic to thyroxine ,like me. My endo, who is very good, likes to try T4 and then add T3, then if not right tries armour and then if no good just T3 on its own. As I have many serious illnesses, although my thyroid is stable , I have to have 6 weekly, or less blood tests, so I can tell what is happening. My T4 stayed the same when I started the extra T3 and still is.

I hope you get on OK.

[DeniseR in reply to Jackie]

Hi Jackie, just realised I hadn't replied to this! Seems like you've got a good endo.

I'm just in the process of finishing off a letter to mine, to try and get him to understand lol

Thanks again

[Jackie in reply to DeniseR]

Hi Yes I am lucky but had a big, dreadful battle for years, so I know how it can be. it is a good idea to send a letter. I usually e mail them to the consultant to the secretary, more chance of them reading it then! Some do not although cardio`s are the worse.if you cannot sort yours out, do get a new referral, I have learnt from bitter experience not to stay with bad consultants even if nice!

Best wishes,

Jackie

[Jackie]

Hi Again, If you wish to reply to any one`s remark, click on"Reply to this"or not found.Just in case as I do not recognise your name.

Jackie