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Author Topic: Underactive thyroid  (Read 12137 times)

babyjane

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Re: Underactive thyroid
« Reply #30 on: December 01, 2016, 08:19:21 PM »

Hello menomale, yes it works very well and has done for a long time. I was never stable on thyroxine alone.

 As I said I am very fortunate to be looked after by one of the top endocrinologists who has a particular interest in the sub group of patients who do not convert properly. He has done much research and has written papers on the subject which he sent me a copy of, although it was all a bit technical for my little brain  :)
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Katejo

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Re: Underactive thyroid
« Reply #31 on: December 01, 2016, 09:13:43 PM »

recently the nhs will no longer fund T3 medication because of a huge price hike by the manufacturer

with respect countrybumpkin this is not strictly true and could be alarmist.

If T3 is recommended or prescribed by a consultant endocrinologist then the GP can prescribe it.  I am in the 15% sub group of patients that cannot convert thyroxine to T3 and have been on T4/T3 combination therapy for many years.  I see my endocrinologist (who is at the top of his field) every 6 months and my GP prescribes my Liothyronine alongside my thyroxine.

I am very fortunate to be looked after by him.
Out of interest babyjane, how did the endocrinologist establish that you weren't converting T4 to T3? Was it just that your TSH and other tests done appeared correct/normal but you had symptoms of underactive thyroid?
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countrybumpkin

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Re: Underactive thyroid
« Reply #32 on: December 01, 2016, 09:14:36 PM »

This is the information given out by the thyroid charities at present so have they got it wrong?  I got a newsletter just last week with exactly this explanation and asking for T3 patients to contact them as they are going to petition??
I am always happy to be better informed and sorry if I passed on wrong information




recently the nhs will no longer fund T3 medication because of a huge price hike by the manufacturer

with respect countrybumpkin this is not strictly true and could be alarmist.




If T3 is recommended or prescribed by a consultant endocrinologist then the GP can prescribe it.  I am in the 15% sub group of patients that cannot convert thyroxine to T3 and have been on T4/T3 combination therapy for many years.  I see my endocrinologist (who is at the top of his field) every 6 months and my GP prescribes my Liothyronine alongside my thyroxine.

I am very fortunate to be looked after by him.



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countrybumpkin

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Re: Underactive thyroid
« Reply #33 on: December 01, 2016, 09:29:19 PM »

Have checked back to newletter and googled and it is policy with some but not all  nhs commisioning group so varies from area to area of the country. My area that the newsletter covered is sadly being affected.  Really hope you do not get affected by this. 
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babyjane

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Re: Underactive thyroid
« Reply #34 on: December 02, 2016, 09:36:19 AM »

when I was diagnosed with Hashimoto's  the doctor could not stabilise me.  I needed a higher and higher dose.  It got ridiculous, I was taking 250mcg, my free T4 was 26 but my TSH was still high and I still had hypothyroid symptoms.  I accessed my husband's works medical cover to be referred to an endo who suggested starting on the combination.  within 3 months things were improving.

I have been with my current endo for 8 years and he one of the top guys with a specific interest in the sub group of patients who do not convert. MY levels now stay stable so long as I remain on the same brand of Thyroxine.  When it was changed 2 years ago I became unstable as my system is hypersensitive to any change however small.  Fortunately there is only one brand of Lio.

I have e mailed his secretary about this T3 Lio question and she is going to speak to him about it for me.  I will let you know what his response is when she gets back to me.
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Dyan

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Re: Underactive thyroid
« Reply #35 on: December 02, 2016, 09:56:03 AM »

That's interesting BJ.
When I see my GP on Monday I will go through everything with him. TSH,T3, T4 etc until I'm satisfied.
The trouble is the practice only uses the meds that are not costing the surgery much money.
I was told this by a nurse practitioner when I had iritis and he prescribed some AB that didn't work.
When I went back to see him he said "we always use the cheapest"
It is very frustrating. I have not got the relationship I would like with any GP.
The one I'm assigned to does not deal in meno, mental health,thyroid etc and the one I'm seeing now doesn't know me that well.i can ring up and not get an appointment for 4-5 wks hence why I'm ringing at 8 Monday morning to see him because he's at the surgery near where I live. Whether I'll get in or not is another question.
It will be interesting to hear about the T3 from your consultant.
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babyjane

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Re: Underactive thyroid
« Reply #36 on: December 02, 2016, 10:12:03 AM »

I never take the care I get for granted but it makes me both sad and angry when I hear stories like yours.  My GP and consultant keep me as well as I can be, I know that, but I never take it for granted because I know I am fortunate.

Our surgery also uses the cheap generics but they don't help me and I react to them so I get the branded versions of the medications I need as recommended by my consultant, who I trust with my life.  If things ever change I know I will not be as well as I am now so every day I feel thankful.

Speak soon

BJ x
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Dyan

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Re: Underactive thyroid
« Reply #37 on: December 02, 2016, 10:34:24 AM »

I had to go private for my mental health. My GP here just releases the meds on my psychiatrists say so.
I've rung my health insurers to see if I'm covered for private care for thyroid problems but they say "No" and referred me to 2places that did full health check ups.
If I don't get any joy with the GP Monday my DH said we'll look into having a private health check.
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CLKD

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Re: Underactive thyroid
« Reply #38 on: December 02, 2016, 05:07:04 PM »

I would be furious if my GP told me that I was too cheap for proper medication!!!!  Maybe go in with the tack of "If you prescribe cheap medication for some patients which works for them, maybe now is the time to try medication which is slightly more expensive to treat my problems, as the cheaper versions haven't worked!"  Their attitude is unethical and probably against the Hippocratic Oath?

Dyan - have a chat with a Pharmacist to see what the actual difference is between the various types of drug you may require?

 :bighug:
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Changes can be scarey, even when we want them!

Dyan

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Re: Underactive thyroid
« Reply #39 on: December 02, 2016, 05:57:05 PM »

Thank you for the  :bighug:
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CLKD

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Re: Underactive thyroid
« Reply #40 on: December 02, 2016, 08:21:22 PM »

You are always welcome! 
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Changes can be scarey, even when we want them!

countrybumpkin

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Re: Underactive thyroid
« Reply #41 on: December 02, 2016, 09:37:56 PM »

Many years ago i got the same branded thyroxine ( Goldshield) on prescription but then it all changed when surgeries were in charge of their own drugs budgets. suddenly branded thyroxine was not allowed only the generic and I found that if I got different generic makes then my thyroid would go haywire.  I have been told that the generic drugs can have 10% leeway either less or more of the active ingredient plus they use different fillers which means people absorb then differently etc.  If what I was told is true this would explain things.  I now stick to same chemist and they have used the same generic thyroxine for past 2 years and my thyroid has settled down again.  But trying to get a GP to acknowledge this is almost impossible as they just won't prescribe by brand because of the cost! 
I also take anti ulcer drug ranitidine which is one of the first anti ulcer drugs for hiatus hernia, I have taken it for over 20 years and it works fine but my GP put me under enormous pressure to change to omeprazole type drugs as they are huge amount cheaper.  I tried all 3 of the proton pump inhibitor drugs and got severe side effects so he had to put me back on my old weaker drug. 
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CLKD

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Re: Underactive thyroid
« Reply #42 on: December 02, 2016, 11:32:38 PM »

I can't understand why, when a medication works, GPs are reluctant to continue prescribing it.   :-\  It would save on money, it saves on appt. time - when they could be seeing another person - etc. etc. etc.  :sigh:
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Changes can be scarey, even when we want them!

babyjane

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Re: Underactive thyroid
« Reply #43 on: December 03, 2016, 11:19:18 AM »

countrybumpkin was that Eltroxin?  that is what I had and when it was withdrawn and replaced with a generic I became very unstable.  what you have been told about different absorption rates and the 10% difference is quite true as I was told the same by my endo.

I have found a generic brand that works for me and the endo has instructed my GP to specify the generic brand - Actavis - on my prescription. Apparently Wockhardt is also a reliable generic. I have the same issue with my propranolol and that has also been specified.  GPs have to follow recommendations from consultants and if a brand is specified on the prescription the pharmacy has to source it if they don't stock it, whereas they don't have to if you just ask for it.  Are you under a consultant endo?

I found generic ranitidine gave me nausea and terrible gastric pain but if I buy Zantc myself it is fine so this surely proves there is a difference in the quality between generics and branded products.
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countrybumpkin

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Re: Underactive thyroid
« Reply #44 on: December 03, 2016, 12:24:29 PM »

Babyjane, Goldshield is the brand name of the thyroxine and is still I have read the best but impossible to get it prescribed now by a GP due to costs.  My generic is either wockhardt or actavis now and on both these I have been stable - if my pharmacist changes supplier I will change pharmacy!
Most thyroid patients are not under hospital consultant endo unless there are additional complications, I have straighforward underactive thyroid and have never ever seen a endo and no GP would refer me so can't go down that route to get branded drug sadly.
Glad you are stable
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