Been to Doctors today to see if I could get tested for ferritin etc as I am still feeling quite unwell, despite an increase in levo from 75 to 125mcg over the past 18 months. Last TSH test in February was 4.87. After a bit of a speech i.e. endo's and doctors treat on TSH alone symptoms don't come into it. They take the view that if TSH is within range then you are properly medicated - end of story. At this point I felt myself getting a bit angry and replied 'no, not until they suffer with the same thing themselves and then perhaps they might find out this is not how it works in reality'. silence prevailed. I asked if they could suggest anything else that may be a problem and was told 'No, sorry'.
Now, one of the reasons I thought they might agree to an iron profile is that I have had blood in my urine due to kidney cysts, for at least 3 years to my knowedge. I asked if this could make me anaemic but I was met with silence. Didn't even ask what symptoms I had, not interested. Now I appreciate that the amount of blood being lost is probably very small but even so it was not even up for discussion.
In the end she agreed they would test TSH again as I was still feeling unwell but warned that if it was still in the normal range, nothing else would be tested - so there you have it.
I am sure you are all familiar with this story. My vitD is off being tested at the moment, had saliva stress profile done, so now I guess I need to get iron done. am I going in the right direction?
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Your doctor sounds like mine who goes on TSH levels even though I am feeling dreadful. I was okay till just recently so I know something isn't quite right, but just get fobbed off. I am going to try a different doctor but don't hold out much hope.Don't even mention testing B12 or Vitamin D, just want me to take anti depressants which I have refused, probably think I am being awkward.
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Thanks Wednesday. At least I didn't get offered anti-depressants but I was offered statins - big deal, I suppose they are going to solve all my problems. Just as long as I don't have a heart attack on their patch thats all they seemed to worry about.
I could change doctors but fear they would be all the same. Was thinking of just going it alone i.e. private endo. The NHS just seems too risky.
Hi, I have been hypo for 20 yrs and taking 100 levo. my symptoms got much worse and 6 weeks ago i seen the GP who said it was stress, i should loose weight etc. i argued that it was my thyroid and he ordered lots of bloods.
TSH came back 0.17 and he wants to reduce levo to 75mcgs.
I showed him the print out of symptoms from this web site as i had ticked off nearly every one...... he would not even look at it, he said he would retest the THS ONLY as the lab wont do the others but i could have other tests done "privately".
He then asked what I thought was wrong with me! i tried to ask about vit b12 as i have sore mouth throat etc and the lab had suggested it, he just fobbed me off and said my results were normal... he didnt even look in my mouth and i have been several times. i left the surgery in tears and feel so let down. so like you i am thinking of finding a private endo.... good luck with your progress, i shall be reading lots to find out what to do next.
I would send an admin here a private message and ask for the list they have of NHS and private endos that admin & members have recommended. There may be one in your area.
If there is I would push to get a referral. I appreciate you may have to really push hard, but it's worth it.
Thank you Totoro. I already have the name of a private endo in my area from Admin but I was hoping that I could have at least got some of the tests today from my doctor. I wasn't quite prepared for the reaction I got - quite shocking.
However, I will plod on and when I have all the tests I require I will go back to said doctor and ask for a referral.
It's a Tayside, Scotland 2010 study which classified a TSH of 4 and over as HIGH. It states that:
"Cardiovascular disease, dysrhythmias, and fractures were increased in patients with a high TSH"
Tell him if he doesn't know about thyroid care he needs to send you to an endo because he is categorically not giving you the right care.
I'd also recommend Dr Toft's book as helvella says. It's written in association with the British Medical Association and Dr Toft is Surgeon to the Queen in Scotland so he can't ignore it.
A TSH of 4.87 while being treated with levothyroxine is far, far, far too high. Although it is only approximate, somewhere near 1 or below would probably be far more sensible.
Yes - you are right to ask about iron. And D and B12. But you quite likely (i.e. almost certain!) to need more levothyroxine.
If you have not already got a copy, get Toft's book:
amzn.to/zQ7dVm
Is there any possibility of changing doctor? Or going when she is on holiday and a locum would see you?
Thank you Rod, I was thinking much the same, but, how on earth could I persuade them to give me more if they are insistent that 4.87 is within range and I am therefore well medicated.
They have agreed to re-test the TSH as it has been 3 months since my last test and I am still feeling awful. My worry is that if, say, it did come back around 1, that they might then want to reduce my dose.
My inclination is to not have the TSH test done at the surgery and go down another road as I am just not up to the fight with GP's. I will have iron tested privately and go from there I think.
Thanks for your help and I will have a look at Toft's book,
If they are insisting that "in range" is "in range" then they can't (surely to goodness) pick and choose where in the range when it suits them, but not when it suits you!!! But I understand your fear of that.
You could go down the "I would like a second opinion" route.
I'm afraid the clinical guidance given to doctors is that TSH is the thing to go by. I had quite a battle in my GP practice as they wanted to reduce my dosage of T4 due to suppressed TSH. I tried the lower dose but did not feel good. I went prepared to argue with the article by Dr Toft which says that some people do not feel well unless their T4 is near the top of the range and TSH suppressed. I saw my own GP who I now think is wonderful. She listened to me and then contacted an endocrinologist for advice, whom she assured me was good. Also tested me for free T3 on my advice. He said it was okay to continue on my current dose (125 mg T4 and 10 mgT3). GP said she would arrange for a bone density test just to check that all is okay (the worry is about osteoporosis linked to suppressed TSH which I think is meant to indicate 'too high a dose' of thyroxine'.
So some Dr's are more modern and respectful. I am sorry you have had bad experiences with GPs, we should always be treated with respect and listened to.
Thank you Coachv, its good to know that there are some GP's out there who don't think they know it all and are prepared to listen and take expert advice. Perhaps I should get Dr Toft's book and go the same route as you. There are few professions in the world where you would go with a problem and come out feeling worse than when you went in.
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