Fuming

[trisha7]

My daughter saw GP with TPO antibodies reading well over 1000. Acknowledged it was through the roof. All he cared about was TSH of 2.94 a, little while back. Also ignoring the crippling debilitating symptoms she has had for a few months. Would not diagnose or prescribe Levothyroxine. I'm fuming. I also was fobbed off a few years back. How has the NHS got so bad?! Who do I complain to? Why doesn't Thyroid UK petition about this very poor care?

[Buddy195 Administrator]

Your daughter’s thyroid is certainly struggling, as TSH should always be under 2 (and many members here reporting they feel best when this drops closer to/ under 1). Unfortunately NHS medics are guided to not prescribe Levothyroxine until TSH is significantly elevated (usually in 2 separate tests). For some, elevated levels can be transitory. For this reason, ‘wait and watch’ is the usual mantra offered, unless an endocrinologist supports a trial of medication based on symptoms alone.

Have FT4 and FT3 been checked? Or key thyroid vitamins (folate, ferritin, B12 and but D)? Do push GP for these (in first instance)

Just checking, was her thyroid blood draw early morning (before 9am) when TSH is higher (patient to patient tip)? When is her next blood test due?

[SlowDragon Administrator]

Please get her to join the forum

She needs FULL thyroid and vitamin testing

ALWAYS test early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

ESSENTIAL to test and maintain GOOD vitamin D, folate, B12 and ferritin too

Has she had these tested

Exactly what vitamin supplements is she taking

Low vitamin levels tend to lower TSH

GP should be testing for coeliac too as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

With two separate thyroid tests with TSH over 5, high thyroid antibodies and symptoms she should be started on Levo

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

[cyberbarn]

You asked, "Who do I complain to? "

In the first instance you need to raise a formal complaint to the Practice Manager of the GP surgery. Say that it is a formal complaint so that it has to be recorded as such, otherwise they can just brush it off and it won't go down on their stats. If you are not happy with the outcome then you can escalate it to the ICB. Sometimes just asking the PM which ICB and PALS team does the surgery come under and sort things out because they really don't want us going to the ICB.

Another thing you can do is join the Patient Participation Group (PPG) at your surgery. It isn't a place to air individual complaints, it is to be a critical friend to the surgery which means putting forward the point of view of the patient and working in partnership to improve how the surgery delivers services.

Be that change to the system from within!

[serenfach]

I fully understand your anger. In the first instance, write to the Practice Manager and ask why your sick daughter is not getting treatment so you have a reason in writing. This is something concrete you can fight. If they did not test TSH, T4 and T3 they dont know what is going on, and they are not following NICE guidelines. Do they want her to collapse before getting treated?

Getting a diagnosis is a battle - many of us waited and struggled for ages. Getting the right treatment once you have been diagnosed is another battle, that for most of us is ongoing. I believe they dont get taught much about the thyroid, and put it down to "womens things". I went to the GP with a goitre and was sent to the foot clinic!

So if you dont get an answer from the Practice Manager, escalate it as above. Keep fighting - she is lucky to have you fighting for her, but dont give up. Sending a hug.

[Jeanlynne]

Hi, I think it is terrible that a decent natural thyroid medication does not seem to be consistent. One minute they work, the next, they do not work. If Big Pharm did not get involved, we would all be happy with our natural thyroid medication. They ruined it for everyone. Right now, the place that makes the active ingredient powder, is ruining the product by freezing it when processing, instead of heating it. This is a secret that is not suppose to be known. This is why this medication is so sensitive in working. The potency is off on the active ingredient. Never happened before they changed the way they process the powder. The inactive ingredients are also not the same. Why is the government going along with these changes? That is what I would like to know!! I hope I am not upsetting you, but this happens to be the truth. It should be fought and that is why I am writing this. Many people do not know.