CCG backtrack.?????

[clubby29]

Hi just received a letter from endo about a meeting with CCG. The details of which will be passed to GP’s in due course. But it has been agreed that I would qualify for NHS treatment with T3 and this could be prescribed by primary care. So far so good, I take t3 already 25mcg per day so my tsh is suppressed. Now the rub, because tsh is low he has prescribed me 20mcg per day with instructions to have bloods done in 8 weeks if still low then I will have another reduction. And just to finish it all off this at the bottom: I have been through with him the uncertain objective benefits of Liothyronine medication and the potential for over replacement due to the rapid absorption of Liothyronine and therefore potential long term safety concerns regarding irregular pulse and bone density.

Not sure what to make of this. The tsh argument really needs to be thrashed out or they will stop t3 if tsh is low, which it always will be if I understand it correctly

Any thoughts

[m7-cola]

This sounds like an awful ‘catch 22’ situation. I, like you, thought that when on T3 the TSH will always be suppressed. I am on a similar regimen to yours and will be most interested to see replies to your post from other more experienced members of the forum.

[Hennerton]

As far as I am aware, as long as both T4/3 are well in range, you are not over medicated. The TSH blood test was devised for use with T4 only. How you convince them of this is another matter entirely but Dr Toft has made some statements on this and I am sure someone more knowledgeable than I will post links to other studies that will help you. How suppressed is your TSH?

[clubby29 in reply to Hennerton]

Hi waiting for copy of blood test but I think it was 0.02

[Hennerton in reply to clubby29]

If I were you I would spend some time looking for studies that show low TSH is only a problem with T4 only medication. There are definitely some out there but I had hoped one of the admins might have had some links. Start with Dr Toft. He stated in a letter to me that if T4/3 are in the lower parts of the reference range and not in the upper parts, there is no need to reduce my dose but if either one is in the upper parts of their respective ranges, there is definitely a risk of long term complications. So...where are your T4/3 in the reference range?

[clubby29 in reply to Hennerton]

Both FT4 and FT3 are middle of range

[Hennerton in reply to clubby29]

Well, that is promising. You will just have to fight your corner with the Endo and hope...

[SlowDragon Administrator]

As you have Hashimoto's are you on strictly gluten free diet

What are vitamin D, folate, ferritin and B12 levels like?

[clubby29 in reply to SlowDragon]

Hi as above waiting for copy of bloods but I know from letter he sent I have vit D deficiency, vit B12 deficiency T4 17.5 T3 4.6. I have been gluten free for 3 years and have very limited dairy

[SlowDragon Administrator in reply to clubby29]

Can you add the FT3 and FT4 ranges on these

FT3 looks too low. Possibly FT4 is too low

Low vitamins are symptom of being under medicated

Low vitamins also tend to lower TSH

What are your actual vitamin results and ranges

With gluten intolerance and/or dairy intolerance, it's more likely that T3 is necessary alongside T4

[clubby29]

No ranges info on letter only but I guess they are std nhs ranges. And there is the problem, you may be right and I could take a small increase but I won’t get anything unless I can raise my tsh.

[SlowDragon Administrator in reply to clubby29]

Getting vitamins optimal is first step

Then blood tests must be as early as possible in morning and fasting

No levothyroxine in 24 hours prior to test and last dose of T3 exactly 12 hours prior to test

Make sure to stop any biotin supplements 3-5 days before test

What supplements do you currently take?

Vitamins must be optimal for good thyroid function

Might help to get DIO2 gene test too

bluehorizonmedicals.co.uk/t...

thyroiduk.org.uk/tuk/testin...

[clubby29 in reply to SlowDragon]

Hi just started vits & mins , b12,d,selenium,mag,probiotic. Because I’m on 6 month appointments I had I no idea I was low in all these,worse than that at endo meeting he said everything else on my full blood panel was fine. Have done gene test from BH, got a few Amber markers but no red, I already knew I was a poor converter from Levo trials. Gene results on previous post. Endo also says that gene testing isn’t reliable or proven ????????

[SlowDragon Administrator in reply to clubby29]

Yes Prof Toft touched on DNA tests at recent talk at Thyroid Trust

They are confused as some people have Heterozygous or homozygous DIO2 but cope fine on Levothyroxine

But that seems to be the exception. Often when we are poor converters DIO2 comes back positive

Getting vitamins optimal is first steps. Most of us need to supplement these all regularly and retest regularly to maintain levels.....especially when gluten intolerant

You might reduce Levothyroxine slightly to see if TSH will rise. But many of us find that as soon as we take any T3 , TSH is suppressed

It's likely just a "not so cunning plan" to get your T3 prescription reduced or stopped, to save money

[SlowDragon Administrator in reply to clubby29]

Blue Horizon DNA test results

DIO 1. CA. Green. TC Amber

DIO2 CC Amber TT Green

PDE8B GA Amber

TNFa AG Amber

COMT AG Amber

PDE8B at amber means it's Heterozygous -

I think this suggests sluggish response to TSH ????

[clubby29 in reply to SlowDragon]

Thanks I have a small cunning plan of my own to try if it all goes wrong. My last ditch approach is I have to do 8 weeks on nhs t3 at 20 meg a day, then have bloods done. If I fail the tsh test he will want a dose reduction. Because I have done everything his way for the 2 years I have been self medding I am going to ask for a re balance. The deal being the day he posts me a copy of the reviewed science papers proving AF and osteoporosis are a health risk in people with in range FT3 I will cut my dose, because it’s taken me 4 years to get back to nearly human I’m not in a rush to head backwards.

[SlowDragon Administrator in reply to clubby29]

Here's link about LOW FT3 being a cause of osteoporosis

tiredthyroid.com/blog/2012/...

This is interesting

annalsthoracicsurgery.org/a...

A Fib linked to hypothyroidism

ncbi.nlm.nih.gov/pmc/articl...

academic.oup.com/ejcts/arti...

ahajournals.org/doi/10.1161...

[Hidden]

It sounds like they are going to strip away a little of your T3 meds every 8 weeks because blood test are going to show low TSH level and that's all they seem concerned about.

[Hidden]

You have a problem as many do on this site. I would have tried Levo plus T3 I have the T3, however the GP's or Endos would keep me ill by lowering my Levo anyway. When I left hospital in France after my thyroid was removed I had a letter from the surgeon who stated that my TSH was to be suppressed for all future medication. They just do not understand, so personally I have given up and never visit the GP or Endos and take NDT. It's not ideal but there is no proving/fighting for life. I notice that there are over 92,000 people on this site I wonder how many really feel well?

[Breena in reply to Hidden]

very true.they are just interested in cost not how you feel.

[clubby29 in reply to Hidden]

Yes you are probably right. I think now progress has been made with the CCG we now need to push for an upgrade to endo knowledge, so they understand hashimoto and the vit and min connection and most of all this stupid tsh problem for people taking t3

[Hidden]

The thing is if this were really so, they would charge people who should not have free access to the NHS at the point of entry, they do not bother but are quite happy to keep all of us unwell. Madness.