I went to see my private endo who wrote to my GP diagnosing secondary hypo. Endo requested 50 MCG Thyroxine.
However, GP has refused to prescribe because my levels are "within range". GP has written to endo to explain rational, but I know that the endo is now away for the rest of the summer hols.
So angry. So frustrated.
What can I do?????
I don't understand how a GP general practitioner can over-rule a consultant who specialises in the endocrine system. Could you take it up with the local CCG?
Quite! I know nothing of CCG. How does that work?
I would also make contact with PALS although I don't know if they actually have any clout. Presumably you consulted with a private Endo as the NHS wouldn't help?
Perhaps get your local MP involved?
At the end of the day your GP doesn't understand your condition but that's no reason for his negative response.
Be ready for a fight!!!
CCG ( Care Commissioning Group) is the successor to the PCT (Primary Care Trust) so you'll probably find them in the same place as the PCT used to be.
In your position I would be contacting them and telling them that (a) you have seen an endo (b) he has made a diagnosis and advised about treatment and (c) your GP will not prescribe, possibly because he does not understand what secondary hypothyroidism is.
Ask for their advice and let them pick the bones out of it.
Thank you for your replies.
I quote from the letter from my endo:
' On 12th June tests showed a secondary hypothyroid picture with a free T4 which was low at 11.4, TSH 1.68, negative TPO antibodies, glucose of 4.8 and testosterone of 1.5.…
Problems with temperature regulation; she feels cold and has associated puffy face. She has nail changes and has had weight gain,......
Her symptoms and biochemical picture is typical of secondary hypothyroidism.'
My GP has replied:
'As you state the blood tests...normal range. Please find enclosed a copy of the result and our local guide.
I would be grateful if you could explain to me the rationale for thyroxine on a diagnosis of secondary hypothyroidism within these results....I have not prescribed Thyroxine as I will not accept clinical responsibility....'
I think my GP is ruled by the primary hypothyroidism blood tests and is unaware of the ratios regarding secondary hypothyroidism. He himself has said that he is not a specialist, yet he is totally disagreeing with a specialist.
Aaaagggghhhhh.
Hopefully the Endo will put him in his place! GP will be protecting his job, what a tool.
Virtually everything written as guidelines of any sort focus exclusively on primary hypothyroidism. Secondary is almost always ignored but, just occasionally, it is written somewhere in a footnote that the guidelines apply to primary hypothyroidism - so by inference do not (necessarily) apply to secondary!
If your GP is that ignorant (and obviously has not gone out of his way to read upon secondary), and that unwilling to help, you may be better off elsewhere.
I am so very pleased that you seem to understand your situation - makes a world of difference because you know what you s=are standing up for and why.
I certainly don't recommend it, but at least you are aware enough that if push really does turn to shove, you could self-medicate with some support from the endo. (And if you only need levothyroxine, well,that is not too expensive.)
Rod
GPs do what they like. Mine ignored specialist recommendations too. A piddly nhs gp can overrule an endo, a gastro and a haemo. Mine did. These nhs gps have far too much power. They system is wide open to abuse. It's about the money, nothing else.
Please dont waste your energy complaining. You will get worn out and get absolutely nowhere. You are better off making your own arrangements like many here have had to do.
Thank you all for your replies. This site and ThyroidUk have saved my sanity.
Well, I have an appointment with my GP at the end of the week. I will ask him what is going on. Is he bound by his practice's guidelines?Does he disagree with the endo's diagnosis? Does he understand the difference between primary and secondary hypo?
Does anyone know of a crib-sheet for secondary hypo? I am looking for information that I can present to the GP. I am shattered physically and emotionally. Hunting around now for info is just an enormous task 
Hope this helps,
(NB little snippet to show its all down to cost ! !
"and is strongly influenced by the cost of TSH measurement." )
American Thyroid Association Guidelines for Detection of Thyroid
Dysfunction;
While serum TSH measurement confirms or excludes the diagnosis in all patients with primary hypothyroidism, it will not reliably identify patients with central (secondary) hypothyroidism, in whom serum TSH concentrations
may be low, normal, or mildly elevated.
Have you got any friends who are going on holiday to Turkey? Levothyroxine costs about 2 lira (65p) a pack, and they are available over the counter. No-one bats an eyelid. I bought some the other week.
Google 'NICE guidelines secondary hypothyroidism' and print them out for your GP. Sounds like he needs a crash course.
It's rather a shame he's revealed his ignorance like that, isn't it?
NICE says
"In secondary hypothyroidism (pituitary or hypothalamic disease), the TSH level is low or 'normal' and FT4 is low. "
"Management:
How should I manage suspected secondary hypothyroidism?
If secondary hypothyroidism is suspected, refer urgently to an endocrinologist for investigation into the underlying cause and other hormone deficiencies."
cks.nice.org.uk/hypothyroid...
It does NOT say "and then ignore the endo".
I was reasearching on the computer this morning until my head went dippity-doo.
All the information I've been sent has been excellent.
Fab last comment , Angel.
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