# Good news at last



## Pudsey_Bear (Sep 25, 2008)

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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## dghr272 (Jun 14, 2012)

Good news Kev, although having to battle so long and hard is truly dreadful.

Onwards and upwards.

Terry


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## Ingo Sundowner (May 27, 2020)

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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## patp (Apr 30, 2007)

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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## Pudsey_Bear (Sep 25, 2008)

We changed doctors many times, some just collect their money.


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## patp (Apr 30, 2007)

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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## Pudsey_Bear (Sep 25, 2008)

Yes see OP Pat.


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## patp (Apr 30, 2007)

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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## Pudsey_Bear (Sep 25, 2008)

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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## patp (Apr 30, 2007)

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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## jiwawa (Jun 22, 2007)

Delighted to hear the good news Kev. The relief of finally making a breakthrough will do you both good.

I hope Liz is soon on the mend.


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## Pudsey_Bear (Sep 25, 2008)

I hope it actually works as she is so very down lately and is getting worse almost daily, we have been looking into what happens to our stomachs with all these additives and medicines we are taking as we get older, a friend has been taking a few vitamins etc and has improved miraculously over the last month.


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## Devonboy (Nov 19, 2009)

Excellent news.


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## Pudsey_Bear (Sep 25, 2008)

Better news today, I went over to Guiseley with my dysfunctional laptop to get it looked at by a pro, but no joy, I could drop it off and get it back whenever, so I brought it back home.

I digress a bit, when I got nearly home I rang Liz to see if we needed anything from town, and she was really excited as she had done all sorts of jobs around the house and garden and didn't feel drained, she was tired but still had energy left.

So it's early days yet but hopefully this is due to the T3.


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## patp (Apr 30, 2007)

That is good news indeed, Kev. 

Since you started this thread I have been looking at that forum and it is awful the stories that you read. You would think that T3 was poisonous the way that doctors guard it from us. The main thing I have learned so far is that "normal range" does not translate as "normal for our body" when it comes to hormones.


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## Pudsey_Bear (Sep 25, 2008)

I learned long ago that if you are not firm with doctors, polite but very firm they will go the easiest route, cheaper drugs, no access to specialists.

I have quite bad psoriasis some times, but eventually they sent me to a private hospital to see a professor of dermatology he gave me a ointment which kills it stone dead, it does come back, but I just do as he said originally, IE apply Mometasone for 5 days then stop, I have skin like parchment from all the years of steroidal potions which worked fora day or so.


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## patp (Apr 30, 2007)

I have come to the same conclusion, now, Kev. The two I have seen lately have both been near retirement age and I think they are, as you say, waiting for the pension. The last consultation has left me feeling very upset. I have been advised to complain but not while I am still seeking a resolution to this problem.

When the latest (!) test are back I think I swill ask for a younger doctor. My brother always swears by women doctors as he thinks they try harder. Not my experience with the last one


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## jiwawa (Jun 22, 2007)

Terrific news Kev - its so frustrating that Liz has had to wait for so long. Hopefully the improvement will be sustained.


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## Pudsey_Bear (Sep 25, 2008)

Yes, fingers crossed here too.

She came in to tell me this morning that it will cost £149 for a months supply to come in from France or Spain, she worries that the doctors or pharmacy will stop supplying it on prescription, I have already ordered the next months just in case, I think it'll be okay.


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## patp (Apr 30, 2007)

I am sure there are many drugs that are more expensive, Kev. I know what she means though when we worry about these things. I think it all went wrong when GP's were given control of their budget. From then on the struggle to get properly treated has got worse and worse. I remember thinking that Chris was going to die if the hospital and the GP did not sort out the live saving drugs he needed. Hospital telling us to get them from GP while GP telling us they did not have his notes to prescribe what he needed. It was frusemide for god's sake! I could have got it off the shelf in the vet's. Would not have been the first time I had self medicated in that way.
I recently had all that hassle with a non healing wound. The hospital had sent me home from A&E with no dressings or instructions. I struggled on until I was forced to go to GP to get it seen to. It then took weeks and weeks to sort it out when if the hospital had given me the dressings I could have avoided the GP surgery all together.


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## Pudsey_Bear (Sep 25, 2008)

Nothing to do with GPs PAt, they have to work within the guidelines set out by their health authority, and they by NICE, it is they who need a kick up the arse, I have a non steroidal cream I use for minor itching, as of last month they will not prescribe it as it has not been tested, they hate homeopathic remedies., Allergenics.


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## patp (Apr 30, 2007)

Well our GP is as tight as a duck's ! when it comes to prescribing anything. Repeat prescriptions are policed strictly and god forbid you should ask for some more because you might have lost some.
When I was in recently about my double vision I happened to mention something else going on (sometimes these things are linked) and still came away with nothing to treat it.
Double vision is, you might like to know, to do with old age. Pah! Lumps of hard skin on face are to do with old age. Pah! I could go on but we might be here a while.

Chris not getting his frusemide until he was near collapse was nothing to do with NICE and everything to do with a power struggle between hospital and GP over who was going to pay for one month's supply of a very cheap drug. Again with dressings for my arm. If you go in to GP with any sort of minor injury they refer you to A&E. Staff at A&E then tut tut that you are clogging up the waiting room with an easily treated stitch job.


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## Pudsey_Bear (Sep 25, 2008)

If my doctor did that to me I'd report him, change doctors Pat, seriously they cannot behave like that, you can't march in with a list normally, but if you think they are really related then they have to take notice.

Watch how fast you get a reaction if you mention these peeps

https://www.patients-association.or...99e1bOcEEjg7_q2cUYXJAnIuW-Y8HKhQaAmoVEALw_wcB


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## JanHank (Mar 29, 2015)

Pudsey_Bear said:


> If my doctor did that to me I'd report him, change doctors Pat, seriously they cannot behave like that, you can't march in with a list normally, but if you think they are really related then they have to take notice.
> 
> Watch how fast you get a reaction if you mention these peeps
> 
> https://www.patients-association.or...99e1bOcEEjg7_q2cUYXJAnIuW-Y8HKhQaAmoVEALw_wcB


You, or rather Liz was in my thoughts as I just drove home just now and I wondered if this energy boost she had a couple of days ago is still working Kev?


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## Pudsey_Bear (Sep 25, 2008)

Not sure Energy boost is the right phrase Jan, just back to her old self.


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## patp (Apr 30, 2007)

I am keeping my powder dry for now. Blood results (had to insist) pending on Copper levels to see if they are interfering with Zinc absorption. Then I will put the tests in front of the thyroid forum for their opinion. 

I notice that they recommend a starving blood test for thyroid. I have never been asked to starve. Does Liz starve for her tests?


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## Pudsey_Bear (Sep 25, 2008)

Best to starve and not take drugs, try for early appointment too.


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## HermanHymer (Dec 5, 2008)

Good news Kev. Very happy for Liz!!


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## Gretchibald (Jul 22, 2011)

Pudsey_Bear said:


> 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.


Know how she felt when zapped of energy. Late 80's when my Thyroid problem horribly manifested itself . I was walking from the Airport carpark to the terminal but didn't make it , dragged myself back to the car and had to sit a while to get the energy to drive back home. Was prescribed with a very overactive thyroid. Doctor said they couldn't do anything for an overactive except remove it all or in part to make it go under active and then they could treat it with a little daily tablet . Well all I wanted to do was get back to my very important job at the time ( ha ha , didn't we all think that was important),. Anyway I went ahead with that advice and I was given a radioactive tablet which zapped my thyroid completely - never had a right day since . Before that I could have worked long hours , played in a band midweek and weekends , also went sea fishing evenings and weekends and or rode motorbikes , went hill walking etc , never tired . Biggest mistake I ever made , of course not long after that they came up with tablets for an overactive thyroid grrr. No help to Liz but just thought she might like to hear my story and can understand how it feels to be 'zapped ' of energy . I know of a farmer who committed suicide because he couldn't work the farm anymore. She has my sympathy for the past and best wishes for a better future.


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## JanHank (Mar 29, 2015)

What a sad story Alan :crying:


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## Pudsey_Bear (Sep 25, 2008)

People with no connection with it have no idea normally, the tablets themselves are not good for you either, they attack the immune system, underactive is still better than overactive, but you can really put weight on even if living on next to nothing.


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