Underactive Thyroid for 19 years, Bad experienc... - Thyroid UK

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Underactive Thyroid for 19 years, Bad experience with specialist

looseley profile image
8 Replies

I have suffered from High Anxiety, Panic with the underactive thyroid. Been treated with 100mcg of thyroxine for most of the time, but was referred to specialist (nhs) probably a year or so back. Put on added 10mcg of Liothyronine, but not made any difference. Been suffering horrible added anxiety, persistant cough, loss of voice, sore chest and throat for three months and eye problems. Seen specialist who was rude and tried to discharge me saying "he did not know how to treat me and could do no more". I was really shocked and upset at his manner and did not feel that we had tried other avenues. I said I thought he was the expert, but he just kept saying he did not know what to do! I mentioned the alternative thyroid treatment Armour and he just said "if thats what you want, try that" and hastily wrote a presciption for it! I had to try to extract information as to how to take it and he was most unhelpful. Was in tears when I came out and felt I should report him..... I am left unsure what to do and if stopping the thyroxine is correct? Help!

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looseley
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8 Replies
galathea profile image
galathea

Oh Wow! this is spectacular, no wonder you have high anxiety and feel crap. Chances are that 100 mcg was never enough and adding 10 mcg of T3 would be like throwing a bucket of water in to a swimming pool, it would probably make bugger all difference.

How much armour did they give you, what do you have now and how much did you take? Chances are, that as you appear to have been so badly treated for so long, the adrenals will have been propping you up, so any problems you have are compounded by adrenal fatigue.

I'm assuming that you have not had proper tests and have no idea of any of results, or where you are with it all now.

If I was you, I would go to genova diagnostics or blue horizon labs, get full thyroid profile which will show TSH, free T3, free T4, and antibodies ad get a saliva adrenal test too so you can see what state the adrenals are in. It's going to cost about £180, beg borrow or steal the cash, it's worth every penny for a base line to work from.

Details of private testing on the home page of the website.... thryoiduk.org,uk

It sounds awful, you can continue fighting with the idiots, or you can get your tests done, know where you are and give your doctor instructions on what to do.....

xx G

in reply to galathea

Linky: thyroiduk.org.uk/tuk/testin...

L

x :)

vanessa2 profile image
vanessa2

Yes your endo sounds about as helpful as mine was, but at least he gave you Armour mine did not. I have had an under-active thyroid for about the same time and have to buy Armour from America. And I must say I am wonderful on it and my doctor monitors me on it, so I hope you can get on with the same and see some good results. I was thinking of reporting this endo as she was so rude and unhelpful, how do they stay in their jobs or why are they in that line of work in the first place. x

Aurora-auspice profile image
Aurora-auspice

OMG! How awful for you! What appalling behaviour and attitude! Hope you find an alternative soon xxx

Jackie profile image
Jackie

Hi Unfortunately this is not unusual. As suggested essential you have tSH, T4 and Free T3 tests, Quite likely you need some T3 with the T4, a lot of us need some T3 with the T4.Did you ask for a copy fo Endo`s letter to gP, essential? Also always ask ( secretary at hospital or/ and Gp ask receptionists bloods results wiith the ranges, most bloods different at different Labs. Always select you own consultant with lots of research. GP`s often reluctant to give T3 if TSH low in range, a good endo different A lot of us need Ft3 to be near the top of range, T4 as a general rule top third of range this is on treatment... The Endo should also do do all the relevant tests too.Sounds like a lot of your problems are thyroid related. You also need a thyroid ultra sound, GP can arrange but Endo better. I would get a new referral; to a good Endo, NHS or Private, of your own choice after careful research. Louise ( see above) has a short list of recommended NHS and private Endo`s, but you can look yourself too with careful research, not all on list.

best wishes,

Jackie

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looseley profile image
looseley in reply to Jackie

Hi Jackie, thanks so much for your comments. I thought I had researched the endo well! He has all the qualifications and clout. Just dont understand why he is so nasty with me. I can only assume its because im nhs and not one of his private patients. My gp doesnt seem to understand much about throid probs, I only found out recently mine is the Hashimoto one. I do feel very much on my own with this problem, especially now the endo wanted to discharge me!

Jackie profile image
Jackie in reply to looseley

Hi Well apart from looking at CV`s and details ( often more) on nearby Private hospitals, I then phone the secretary and ask what treatment they like. It does give you a feel as to how they are. mostly nice secretaries have nice consultants. I also fish but cannot ask outright if good and nice!!Actually I have always found a good listener the most important attribute.

Best wishes,

Jackie

Heloise profile image
Heloise

Hi Loose, this may reassure you to take the Armour: stopthethyroidmadness.com/t...

I'm not sure of the exact dosage that relates to your current dose. One grain of Armour may be equal to 75 mcg of thyroxine but it may be in this article. I don't have time to read it all. Don't be afraid to make the switch immediately.

In a way, this doctor's attitude may mean the squeeze is on to get GP's to change their practice of going by TSH only and refusing to take their patients' symptoms into account. This will ruin their day I'm sure. They may actually have to do some doctoring instead of just reading numbers.

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