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post #1 of 31 (permalink) Old 03-03-2021, 12:04 Thread Starter
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Good news at last

Liz has had a thyroid problem for 40 years now, She has been battling with doctors and experts all this time, she has been on the thyroid UK website gathering intelligence of what can or can't be done, the two constants have been her determination and the attitude of NICE to not allow the prescribing of both T3 testing and T3 itself, they are happy to prescribe Thyroxine in its many guises which for some is okay as their bodies convert it to T3, but Liz like thousands of other sufferers cannot convert and this allows their bodies to run riot, as said she has been struggling to get anywhere, but finally today in a phone conversation with a new endocrinologist, he has sent a prescription to the local hospital for T 3, she rarely cries, but today it flooded out of her.
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post #2 of 31 (permalink) Old 03-03-2021, 12:25
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Good news Kev, although having to battle so long and hard is truly dreadful.

Onwards and upwards.

Terry
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post #3 of 31 (permalink) Old 03-03-2021, 12:47
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Good news indeed. Don't know any of you two, but its always good to hear the good news!!! All the best to your wife
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post #4 of 31 (permalink) Old 04-03-2021, 07:38
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Good news Kev!

I might take a look at that Thyroid UK website myself. On and off for years I have been tested for thyroid problems. The most recent was the other day. Always comes back as normal according to the GP that sends me for the test. I was in again recently and queried the fact that various ailments have caused various GPs to question my thyroid levels. This GP got quite aggressive during the consult - I mentioned my lack of temperature control, being hot at night and cold during the day. She spat at me "do you not have a thermometer! We are in the middle of a global pandemic"! Just shows how much she was listening as I was describing symptoms that had been going on for years. This time I am being sent for yet more blood tests for a possible Copper problem that might be competing with Zinc levels. I battle low Zinc levels which do show up in blood tests. In animals it is difficult to get an accurate thyroid reading and vets often just prescribe a low dose of thyroxine to see if symptoms improve. All I am after is a solution to the low Zinc levels that have been going on now for several years. She told me to buy some Zinc supplements in Boots.
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post #5 of 31 (permalink) Old 04-03-2021, 08:13 Thread Starter
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We changed doctors many times, some just collect their money.
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post #6 of 31 (permalink) Old 04-03-2021, 10:15
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Funny you should say that, Kev, because both the ones I have seen are nearing retirement. I keep running the latest consultation through my head where the doctor just kept blocking every symptom I gave her with platitudes of "no - that is all normal" or "that is not linked" etc etc. It is only because I kept sitting there that she researched a little on her computer and came up with the possibility that copper might be involved.
Once that test is out of the way, assuming it is normal, I will take up some of the suggestions on the Thyroid UK website.

Did Liz ever get a referral to an endocrinologist?

I know that, with dogs, people often send their dog's blood off to a particular scientist in the States because they are not happy with the tests available over here.
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post #7 of 31 (permalink) Old 04-03-2021, 10:21 Thread Starter
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Yes see OP Pat.
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post #8 of 31 (permalink) Old 04-03-2021, 13:01
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Can I ask, Kev, if the new endocrinologist is private? I wonder, if NICE forbid T3 to be prescribed, what position that puts him/her in.
I know that vets can prescribe drugs that are not on the "approved" list if they consider there is no viable alternative. I wonder if it is the same for humans.
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post #9 of 31 (permalink) Old 04-03-2021, 13:17 Thread Starter
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No its NHS, a dictor can prescribe more or lees what tgey like, but a specialist has more chance of it getting to you, Liz was very surprised when he told her she coyld have it on trial, but once it's prescribed then our GP can as well it seems that different health authorities have different rules, shes been under leeds all her life, 2 years in Bradford and shes sorted, its appalling.
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post #10 of 31 (permalink) Old 04-03-2021, 13:44
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Well done Liz in fighting for what she needs. I am finding it all very daunting, particularly after my encounter with Mrs Grumpy GP the other day. Hope I don't have to move district! Of course my problem may not be anything to do with Thyroid but, over the years, I have had a lot of thyroid tests and this makes me think that the doctor ordering each test is suspecting a problem. Now I find out that Zinc is implicated in thyroid problems and up comes the subject again.
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