Best course of action??

[Rhinogirl1959]

Hi

My son's (27) TSH has come back from the GP at 3.1 (0.2-4.0) and from Medichecks, taken same day 4.07 (0.27-4.20). He had an appointment today thinking his 75 levo dose would be increased to enable his TSH to come down to around 1. He also had T4 and T3 done by Medichecks and they don't look too bad but could be better (middle of the range).

GP told him no increase as TSH within range and gave him a depression and anxiety leaflet. Looking at his online patient record she has recorded panic disorder after today's appointment. She also told him it was his fault his TSH had gone high early this year as he wasn't taking his medication properly - not true.

I've since learnt that NICE guidelines recommend aiming for a TSH of 0.4-2.5. Can anyone give advice on the best course of action now - should we make an appointment to see a different GP asap/send a copy of the NICE guidelines through the surgeries email messaging service and request an increase/just increase anyway as he still has some 25 and 50 levo left over from earlier in the year - or something else. Really not sure how to tackle this - both he and I are useless at standing up for ourselves but know we need to do something.

[Nanaedake]

I would definitely make an appointment with another GP in the practice and take the NICE information with you (if that's what it says, I haven't googled it) and state that you want to be treated as per the NICE guidelines. They can't refuse. Insist that his dose is increased with another blood test in 6 weeks time.

If you do not agree with the diagnosis of panic disorder, tell the doctor you want it removed from the notes and ask whether you need to write a letter to the surgery to request it. You do not have to accept a diagnosis. Ask how a GP can diagnose panic disorder when they are not a psychiatrist. If your son really had a mental health condition then he should be referred to the mental health team but as he does not and it is thyroid imbalance that is causing his symptoms you want his thyroid imbalance treated properly with reference to the NICE guidelines placed on his notes.

[shaws]

email [e-mail] and ask for a copy of the Pulse Online article by Dr Toft, ex President of the BTA. His advice is:-

"6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added. "

Give GP a copy and tell her she is wrong as your son has already been diagnosed so the aim is a low TSH with a FT4 and FT3 towards the upper part of the range (not somewhere in the range). both the later are (rarely if every done). So she should remove her wrong diagnosis and increase son's dose. He can also say he's taken advice from the NHS Choices for information/advice about dysfunctions of the thyroid gland, Thyroiduk.org.uk.

[Rhinogirl1959 in reply to shaws]

Thanks all. I've emailed Louise to request the link and think I'll get my son to make an appointment with another GP and hope he lets me go in with him for a bit of moral support and back up if necessary.

[Clutter]

Rhinogirl1959,

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.2 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your son's GP.

[Marz]

If the GP is concerned about a panic disorder then I trust she has tested the following - B12 - Folate - Ferritin - VitD. All need to be optimal and not bumping along the bottom of the range 😊 Low levels can cause all manner of problems.

[Rhinogirl1959 in reply to Marz]

Hi Marz, thanks for your reply. All he said to her was that he's feeling tired and dizzy most of the time with the occasional really dizzy spell. Then we saw that on his record! However we've had those levels done by Medichecks and his active B12 is quite high but others are reasonably good but could be better.

[Marz in reply to Rhinogirl1959]

How about Iron - if low it could mean low oxygen levels in the body 😊

[Rhinogirl1959 in reply to Marz]

Hi Marz, thanks for your reply. I don't think he's had his iron checked, just B12, Folic Acid and Ferritin. He's ordered a B complex. I wonder if he should get iron checked.

[Marz in reply to Rhinogirl1959]

What were the results of B12 - Folate - Ferritin ?

[Rhinogirl1959 in reply to Marz]

Active B12 256.0 (25.10-165)

Folate (Serum) 19.98 (2.91-50.00)

Ferritin 96.1 (30.00-400)

Any advice on these levels would be appreciated as they seem "all over the place". He's stopped taking B12 as its quite high.

[Marz in reply to Rhinogirl1959]

They all look fine to me - if you would like more detailed comments you could post the results in a new post where more people will see them ... 😊

[Rhinogirl1959 in reply to Marz]

Thank you

[Angel_of_the_North in reply to Rhinogirl1959]

Cortisol? Low cortisol can cause dizzy spells and adrenaline surges.

[Rhinogirl1959 in reply to Angel_of_the_North]

Hi, he's just had his cortisol done through medichecks and they say all fine apart from it being slightly high when he did the 4pm one (although not sure if the waking and 12noon one should be higher, although in range.

CORTISOL (SALIVA) WAKING 14.600 nmol/L 6.00 - 21.00

CORTISOL (SALIVA) 12:00 3.50 nmol/L 1.50 - 7.60

CORTISOL (SALIVA) 16:00

* 7.52 nmol/L 0.00 - 5.49

CORTISOL (SALIVA) BEFORE BED <1.5 nmol/L 0.00 - 1.99