After persuading my Dr that she should dose Levo by weight as per NICE guidelines, a few months ago, she is now freaked by my TSH, and having dropped the dose from 150mcg to 125, and the TSH barely, moving at all (and me telling her that my tests show FT3 and FT4 dropping again), she's dropping it again. i tried just plain refusal, but she won't prescribe a continued dose even. She said my thyroid 'doing it's own thing', so I jumped on that and asked 'what if my pituitary gland is no longer doing it's thing? what if my TSH never gets as high as you want? Will you just keep reducing, until I'm on nothing?' Reply, she sympathised, but in her 20 years experience, the TSH always increases. She wanted me on a 100mcg dose. I said fair enough, TSH might eventually go back to what it was before when i was on 100, but that was over 1 and I can't live with that. I had sent her a list of symptoms in advance of the call. She just kept going on about risks. We ended the call with me in tears, and her allowing me 125mcg and 100mcg on alternate days.
Epic Bloody Fail With GP today: After persuading... - Thyroid UK
Epic Bloody Fail With GP today
For goodness sake! I cannot believe what I am reading ... I would find a more sympathetic GP if I was you. I remember sitting across from my GP and actually begging for Levothyroxine because I felt so ill but he refused to help. I then wished he would get thyroid disease or his wife so he would know what it is actually like to suffer when your thyroid doesn't work properly. You could always self medicate like I have had to do and others on this site. Sending you a big hug (((hugs))) because I know how ill you must be feeling. My elderly Dad is on 100mcg and I think he needs an increase but he thinks his GP know best unfortunately.
thanks. i keep wondering about self prescribing, but I'm on merry go round that my health affects my ability to work, and as I'm self employed, I'm on v low income.
Levo is very cheap to buy online.
Reply, she sympathised, but in her 20 years experience, the TSH always increases.
So your doctor has never successfully diagnosed Central Hypothyroidism? That is scary! I simply don't believe it is as rare as doctors think. They just don't test for it. There have been a few people writing into the forum over the years who haven't been diagnosed when they should have been.
Yes, i considered pointing that out, but my emotions were winning at that point. I am educated and articulate (when the fog lifts) but i cannot make myself heard.
I rarely cry but my Endocrinologist reduced me to tears when he said everything was fine when it wasn't. He then offered me counseling for feeling so ill.
You have my sympathies - I have the same problems in dealing with doctors which is why I treat myself for as many health problems as I can, including thyroid.
She just kept going on about risks.
One thing to always keep on hand is research papers that discuss the risks of long term non-diagnosis or under-medication of hypothyroidism. I haven't got such a list handy right now. It would be worth looking into posts and papers by diogenes who has been a thyroid researcher for a very, very long time :
healthunlocked.com/user/dio...
who is, in real life, Dr John Midgley B.Sc (Leeds) D Phil (Oxford)
You can read more about him here :
thyroiduk.org/our-people/me...
Also do a search for "Midgley" and another search for "Research" on the Thyroid UK website :
yeah i have been trying worth that one. I just struggle to retain the info i need.
I was the same I couldn't drive or even type and I am a trained touch typist. I read this site for about a year before I had the energy to ask for help or share my story.
The ignorance and inability of medics to learn is absolutely breathtaking. If bus drivers exhibited the equivalent incompetence at driving they’d be sacked for dangerous driving!!
This analogy made me laugh, and it’s so true
So how low is your new terrifying TSH ? Is below 0.04 ? because according to
academic.oup.com/jcem/artic...
the risk's are only there below 0.04 and even then they(Heart prob's anyway) are less than the risks when TSH is over 4...... and we all know they don't get worried by TSH over 4, as they are perfectly happy to wait till it's 10.
that s interesting.
This might help
See the link below and look-up The Pituatory Foundation
My TSH, FT4,T3 and FT3 (when docs do it) are never higher in range always scraping the floor and like you they just want to reduce meds never increase....sigh!
Remind the Dr that Risks go both ways, that if the body is not getting enough T3 (converted from T4) then the heart will be struggling (the heart is quoted as a great concern with the thyroid hormones that it will be over stimulated). Since I have been on T3 my blood pressure which was borderline high has reverted to normal. My pulse has dropped from high 80's to low 80's and into the 70's. My temperature which had been low 35 at times and even 34.9 has struggled up to 36.3 rarely higher. Skin changes around my ankles (which could lead to ulcers) has reverted to normal skin colour. T3 increases cardiac output(hence getting down my legs better and feeding the tissues in the lower leg), it also decreases peripheral resistance, which is why my blood pressure is improved. Perhaps if more people were treated corrctly for Hypothyroidism then less people would have to be on medication for high blood pressure with the cascade of more and more medication.
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