GP on Friday. Normal TSH but 3 tests saying Free T4 is lower than range. Any tips for how to request a trial of medication?

[Vicm78]

Hi

Firstly I have posted on here a few times now and everyone is SO helpful so helpful so thank you!

Apologies if you have read/followed posts from me before and I'm repeating myself. To cut a long story short I've had a number of blood tests (incl Medichecks) which demonstrate that my Free T4 is lower than range (7.8 and range is 7.9-16 / 11.9 and range is 12.0-22) TSH sits in normal range each time.

Private Endo did tests too and is now not contactable for my results. I'm battling to get them back.

Went to GP who keeps sending me away with an 'anxiety/depression' diagnosis despite me mentioning and questioning my symptoms (dizziness, tinnitus, headaches, tiredness, forgetting what I'm saying mid sentence, excessive coldness etc). They said 0.1 out of range is not significant.

Has anyone successfully convinced a doctor to allow them to trial medication and if so what sort of approach did you take to get them to agree to this trial?

What are my rights as a patient regarding this?

Many of you have given me some great web links and articles to share with GP but just wondered what personal experiences you have had.

Thanks

[greygoose]

You didn't say what your TSH is. There's no such thing as 'normal', always give results and ranges.

Your next step, rather than beating your head against a brick wall, is to get your FT3 tested. If that is low, and your TSH is low, the you should be considering Central hypo, where the problem is not with the thyroid itself, but with the pituitary or the hypothalamus. It's doubtful that your GP has ever heard of it, so you're going to have to sell the idea to him, and get him to refer you to an endo. Your FT4 may be only one point below range, but the point is that (if) your TSH doesn't correspond to the levels of your Frees, indicating a pituitary/hypothalamus problem.

[Vicm78 in reply to greygoose]

My Free T3 was tested and Medichecks said it was in range. My result for FT3 was 4.5 The range is 3.1-6.8. My TSH result was 1.41. The range is 0.3-5.0. My FT4 result was 7.8. The range is 7.9-16.0.

I've mentioned a pituitary issue to GP based on the good advice I have received on here and they don't seem to want to know.

Been to an endo privately who ran lots of tests including antibodies tests and I can't get in contact with them for my results and they are ignoring my messages. However I do know my antibodies are fine according to Medichecks. Thyroglobulin Antibodies <10 Range is 0-115. Thyroid Peroxidase Antibodies 11.7 Range is 0-34.

[greygoose in reply to Vicm78]

I agree with reallyfedup, it does look like Central. Your GP is being and ostrich and trying to avoid referring you - I think they're encouraged to discourage referrals! But, you need to insist. Your FT3 and FT4 are low, but so is your TSH. That's the definition of Central hypo.

[Clutter]

Vicm78,

I can't add to the advice I posted in your earlier posts. Show your GP the links I posted and if s/he refuses to trial Levothyroxine or refer you to endocrinology find a new GP.

[Vicm78 in reply to Clutter]

Thanks - I am at that stage now. I'm signed off work and the rest has done me wonders but all of a sudden I've had a big flare up - forgetting my words, muzzy head, headaches, dizziness, anxious panicky feelings etc. Is it possible to have flare ups with a thyroid problem? I feel absolutely dreadful today. I can't put up with it any more and I can't go to the GP to be told 'Well you have depression and anxiety' I have nothing to be anxious about at the moment!

[MrsAlice in reply to Vicm78]

unless your TSH is out of range, GPs don't know what to do. Ask for referral, you can also request a list of thyroid friendly endos from thyroid uk.

[Clutter in reply to Vicm78]

Vicm78,

You can have autoimmune flare ups if antibodies are abnormal.

[Vicm78]

Done lots of searches to take with me! Would central make me feel absolutely dreadful? The minute I woke up this morning I had a crushing feeling in my chest and a sense of panic, when I stand up I feel like I'm going to fall over and I have a muzzy head and headache. Can't remember my words, eyes are stinging and generally feel rubbish. Is it possible to have flare ups with this? Been okay for a while but today isn't good. Thanks for your advice.

[SilverAvocado in reply to Vicm78]

Central hypothyroidism wouldn't give you flare ups in the sense that Hashimoto's sufferers have. But the kind of fatigue bring Hypo gives you can have lots of ups and downs. Definitely there is 'pay back', this means when you do too much activity that tires you out, you may be tired hours or days later rather than at the time. Symptoms can also be unpredictable, I find that once I get tired out, which I try to avoid, I can get almost any kind of symptom, maybe a migraine, maybe excessively cold, maybe nausea and vomiting, it's the surprise that makes me want to avoid it so much.

In the short term, before you get your treatment sorted, I find rest helps a lot. Cut down your usual weekly activity so that you're consistently doing a lot less. Build n a few mornings or afternoons in bed if you can, read or watch videos or sleep if you can. I find that if I do this I will greatly increase the things I can do when I am out and about.

[Vicm78 in reply to SilverAvocado]

Thank you. I have been signed off sick and I must say that after about 6 weeks I started to feel a lot brighter. The first 4 weeks I spent sleeping.

Now just this week I'm starting to feel under the weather again.

I def think rest / being off work has helped. It's hard juggling a young family and work when you feel rough and tired all the time.

Thanks

[Vicm78]

Thanks. My mum is going to come with me. I'm now off to the private hospital in person to see if I can get them to release my latest blood results as the endo who is based there has disappeared and not getting back to me. The private hospital say that they have my results and can see them but can't discuss them. Grrrr!

Just one last quick question! What are the repercussions of taking thyroxine of you don't need it? Are there any? I just want a good answer if the GP uses this as a reason not to prescribe!

[Vicm78]

Update! Just been to chase my blood results with the endo and they've refused to give me results directly. Faxing them to my GP. It's a nightmare!!! X