Should I self medicate?

[Mickeydooley]

Had another disastrous conversation with (another!) endo at the clinic yesterday. They always ask how I’ve been and what my symptoms are like. Yesterday I decided to say I was fine because they don’t listen anyway and I’m fed up. They only ever look at TSH which in my case has been suppressed for the last three years ever since I went on t4/t3 treatment. The endo told me that my TSH was VERY low last reading (0.005) compared to previous test (0.01) and if it was that low again this time they would reduce my medication. Is there really that much of a difference at that sort of reading? I asked him if he was going to dose me based on TSH alone and reduce my meds on that basis without taking my low thyroid hormone levels into account? He told me that TSH WAS a thyroid hormone and it needed to be in range. He asked me if I knew what TSH stood for. Well!! I couldn’t bite my tongue any longer! I told him there was no point in doing further tests cos my TSH would still be suppressed and no point in me coming back to the clinic. He told me that if I wanted t3 I’d have to come back every three months for monitoring otherwise they couldn’t prescribe it. I’m worn out with it all. May have to resort to self medication Sorry for the rant. So angry!

[PurpleNails Administrator]

0.01 and 0.005 are likely test limits ie both results Indicate undetectable levels by each test range limit.

If doctors thinks a pituitary hormone is a thyroid hormone then they don’t understand. I’m not sure you can reason with that, I think I’d say I’ll wait for a doctor who understands thyroid basics.  

Making decisions using 1 measure is a way of simplifying how they work. Im hoping they knew what TSH actually stood for even it they didn’t understand the process. 

Doctors don’t really want to know if you have symptoms, they have already decided based on…well usually the TSH.  

I once stated I didn’t want to go through my symptoms as they hadn’t changed & I was always told it not related - so the doctor insisted I go through them.    Which is odd because when you volunteer them they want to shut you down as soon a possible. 

So on this occasion she listened carefully & then as I predicted told me they were unrelated. I also got a 5 min lecture about the dangers of smoking even though I’ve never smoked & said so several times.  This was after she’s said I didn’t have the condition it’s particularly dangerous for.  

I think you have to argue your case as politely and reasonably as possible and if they threaten you with removing necessary treatment write a formal complaint.

[Mickeydooley in reply to PurpleNails]

when he told me that 0.005 was soooo much worse than 0.01 I did chuckle. When he told me TSH was a thyroid hormone I corrected him. And when he asked me if I knew what TSH stood for I told him I knew exactly what it stood for! Unfortunately there doesn’t seem to be a doctor here who understands thyroid issues although I am in contact with naturopath doctor who specialises in treating thyroid patients. I’m afraid I’ve lost any patience I had dealing with different endos each time I go to the clinic over more than three years! My notes must be worth a read!!! 😂

[TiggerMe Ambassador]

I've got my first Endo appointment coming up and it sounds like it's a bit of a pantomime 🤔

I was intrigued to see that you use Metavive 111

I've been looking into more natural adrenal and thyroid options, they seem to make a thing of saying their Adrenavive is sourced from BSE free New Zealand bovine but the rest of the range is sourced from UK and Europe.... obviously not BSE free?

I wonder did your Naturopath particularly rate them? I think Pure source theirs from USA which only had 5 or 6 cases of BSE if you believe them 😳 I don't know what to make of it!

[LAHs]

As Purple Nails said .01 and .005 are the lowest limits that each instrument can measure. I used to have .01 but then they bought a more sensitive machine to do the analysis and then I dropped to the new lowest detectable limit which was .005. (mlU/L). As to whether you should self medicate unfortunately the answer is yes. You can fiddle around feeling miserable for the rest of your life and this will not stop until you get the correct medication. It appears that the only person who can do this for a patient is the patient. It is somewhat scary at first (that was my experience) but take it slow and read as much as you can. The science of the thyroid is very difficult for endocrinologists because there are too many variables sloshing around, they are comfortable with diabetes because there are only 2 main ones, sugar and insulin, which contribute to the main effect. Most of us thyroid patients on this site can rattle off seven from the top of their heads.

So, DIY I'm afraid and ignore the constant arguments every time you go to the doctors for something entirely different. They measure your TSH and make a great big fuss, just tell them up front that you have low TSH and you don't want anything to change because you feel perfectly normal. At least that is what I have to do.

[LAHs in reply to LAHs]

Oh, and major red flag. If your doc doesn't know that TSH isn't a pituitary hormone, get another doc. It says it in it's very name it is something which stimulates the thyroid, it isn't the thyroid stimulating itself. If you need to write why you want a different doc, make sure that this is spelled out in great detail (i.e. that your doc doesn't know the fundamentals).

[Mickeydooley in reply to LAHs]

Thanks! I agree with every word!