First retesting for my low thyroid

[mrsrstocka]

hi everyone after a long time chasing the doctor about my low thyroid i finally managed to get a diagnosis in october time they put me on 25mg to start with then had a blood test and put up to 75mg and i was told to come back in 6 weeks to check my levels i went back and they did my test. My problem is (one of many with my doctor they are not keen to help me in the slightest tbh!!) i rang them up the day before yesterday to find oout my results and all they said is your fine they did not tell me my levels, and i have just realised (forgot to give the nurse the blood test paper) that they infact have only tested my t4 (maybe ft4) can't remember off the top of my head but just the one none the less so i believe as far as the paper is concerned any who i am asking how many of the thyroid hormones should they be testing (i should mention originally my tsh was 7.750 and my ft4 was 0.90 i don't feel any better starting the meds and just wanted some advice really bloody doctors are so useless tbh lol

[shaws Administrator]

Hi, I am sorry you had difficulties with doctors but many of us have found the same disinterest once the TSH and T4 are 'somewhere' in the normal range.

We have to educate ourselves. Never phone up and ask for results - we can make mistakes. Always go to the surgery and ask for a print-out with the ranges and keep for your own records. If receptionist is reluctant put a request in writing so there will be no problems.

Your surgery is following the recommendations i.e. TSH and T4. If both are in range they believe job is done. We need levothyroxine sufficient to bring the TSH to 1 at least or lower. They freak out imagining that's we'll have a heart attack and I don't know who spread this rumour or osteoporosis. We're more likely to have problems if we are not optimally medicated.

If we feel we aren't improving and then ask doctor to check Free T4 and Free T3 and if he, or the lab, wont do them you can get a private one from one of our recommended labs. We have to know our FT3 in particular as well as FT4 on occasions if we aren't feeling well.

Do you get the earliest possible appointment, fast (you can drink water) and allow 24 hours gap between last dose and test. If you understand most don't know them anyway then we can plod on with the help of the members and it is great when you are successful

[mrsrstocka in reply to shaws]

i thought that mighthave been the case. My husband is polish and we decided to get tested whilst over there (cheaper costs much much better health care) and thats what came back as 7ish before that had been to and fro from docs first saying yes you have hypo then no your normal then hang on slighty under but not treatable all that rubbish so thought well i shall find out myself and off we went (results te same day may i add) anyway i went back to poland in novemebr to see a specialist (struggling with a few other things also didn't know what was wrong the docs here not willing to help me) and one person there is a doctor knows a few things about thyroid told me that in poland ANYTHING over 3 is treated as it significantly hinders health etc . good to know it was not in my head though so i guess i will goback to my guys and find out what my readings are their though i have to go to docs on thursday anyway so i will insist on knowing my numbers so i can keep a record of it also thanks for the repy

[shaws Administrator in reply to mrsrstocka]

The biggest problem is the BTA's guidelines in that they state (or used to as I've not looked at their updated ones) that we had to have a TSH of 10 before being diagnosed. It is more than disgraceful when people have clear clinical symptoms and might reach 10.

Just ask for a copy of your blood test resuts with the ranges and the receptionist can run them off for you and say you will be doing this in future. Keep them for your own records and get one each time.

[helvella Administrator Thyroid UK in reply to shaws]

One of the most glaring issues is that the so-called guidelines say (if you read the right bit) that they apply to primary hypothyroidism but give absolutely no guidance on how to determine whether it is primary hypothyrodism - or not.

They also get applied to absolutely anyone, even when non-primary hypothyrodism is suspected.

[mrsrstocka]

i went back to the doctor this morning and they have told me that my levels are tsh 2. (the doctor told me she wanted them under 1) and ft4 at 14.9 not sure if these are ok the receptionist said they were fine but i am still not wholly convinced especially as i feel like i am starting to feel worse now. If i remember rightly at one point last year or the year before i am sure she said i was slightly under my levels of b12 so i am interested to get those checked out along with my vitD which i have already been told that it is possible that i am deficient there the problem is as we are all aware that these doctors just do not care sick of going there begging for them to help me and they don't listen.

i will probably have to go private can anyone recommend anywhere that does them (hopefully not too expensive i can't afford it but if it means heading in the right direction you know)

Starting to feel really pissed off about all of it and it is really affecting me you know what they say i just wanna be normal lol sick of struggling through my life. feeling sorry for myself at the moment

thanks

[Marz in reply to mrsrstocka]

People will not see this post - spotted it in the News feed. Best to start a new thread with a new post 😊