So today I had a phone consultation with my Dr which didn't go at all well but not unexpected. I had dropped in a letter with a list of some of my main symptoms and my medichecks results so this call was to discuss.
Brief history:
Results from GP Feb 2018
TSH 5.02 mU/L 0.35 - 5.0 (no T3 / T4 or antibodies Vitamin or Iron tested)
Results from Medichecks Feb 2018
TSH 5.07 mIU/L 0.27 - 4.20
Free Thyroxine 14.1 pmol/L 12 - 22
Total T4 96.9 pmol/L 59 - 154
Free T3 4.34 pmol/L 3.1 - 6.8
Thyroglobulin Antibody 195 IU/mL 0 - 115
Thyroid Peroxidase Antibodies 66.2 IU/mL 0- 34
My B12, Folate and Ferritin are all low in range.
I also am on meds for hypertension and my cholesterol is raised.
I have many symptoms (see previous posts) and thought this was menopause (Im 49) until I got the TSH results and looked into it on thyroid UK and this forum. Everyone has been very kind and helpful
Well according to my Dr today I'm normal - fit, well and healthy and should be really happy with my results!
She said my symptoms are all menopause and that I should go on HRT.
I had to keep my cool which was really difficult and I challenged her on a number of things but she was having none of it and said it would be inappropriate to treat me and could actually cause me a lot of problems. I argued that by not treating me it was already causing me problems.
She said about Medichecks (and other online labs) this is her actual quote "their machines are not calibrated properly and are not reliable so are not accepted".
I said OK, then can you re-test me for the TSH, T3, T4 and antibodies. Answer - No, we can't do those tests.
OK I say, then if I pay to have them done privately, where will you accept them from?
No-one!
So, they won't test me, accept the results I have or accept results from a lab of their own recommendation!
She wouldn't accept that with the antibodies it shows my thyroid is being attacked by my immune system and failing. She just said that they will not treat til TSH is 10+.
I managed to push for a Gluten test (I have picked up a form for Tissue Transglutaminase Antibody) and also B12, Ferritin and Folate. She said they would not test for Vit D.
There was already a form waiting for follow up Thyroid function test in May but that will just be TSH again.
I also asked for a 2nd opinion but I am not expecting another Dr within the same surgery to give me a different opinion.
Where do I go from here? I am so frustrated and confused by it all
Look forward to any advice on what my next step should be.
Thanks x
Written by
MelonJ
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You can test vitamin D privately via vitamindtest.org.uk £28 postal kit. This is actually an NHS provided private service through Birmingham hospital
Suggest you wait until you have coeliac and vitamin tests back.
Then come back here for advice.
Assuming no improvement see either change to a more enlightened GP or see an endocrinologist privately
The reason the range is there, is that if result is out of range you may have an issue. Admittedly it is only just outside range.
It's true it's good practice to retest 6-8 weeks after a fist abnormal TSH test result , as it may be transient. But with high antibodies it's very unlikely and modern thinking is if antibodies are present medication should be considered to nip things in the bud, before get more unwell, especially if you already have symptoms
However you may find changing to strictly gluten free diet and supplementing to improve vitamins enough to recover.
This sounds exactly like me when I first started down this long hellish road! My levels were almost identical apart from TGO antibodies higher. But I felt like S***.
My GP at the time laughed at me like I was stupid when I said my TSH was raised and told me it was clinically insignificant but he'd order more tests. When I challenged him about repeating the thyroid test he said he'd do his own thyroid test and others but wouldn't tell me what they were. I know now it would only have been TSH.
Needless to say I didn't go for the test and found a new GP asap. They're not perfect but they addressed my vitamin deficiencies then when I was still symptomatic allowed me to trial 25mcg levo. That was March last year and I'm now on 88.5mcg waiting for an endo appointment to increase again.
Don't give up. Keep changing until you find someone who will listen. I changed surgery completely but even now within the same surgery they don't all have the same views on thyroid treatment. Its a small surgery of 2 drs with 2-3 occasional locums. 2 are ok with TSH just within range, 1 aims for under 2, 1 listens to how you feel and increases if there's any room but he's hardly ever there and the whole surgery request to see him for everything when he's there, the other I haven't met yet. So don't be put off by them being in the same surgery. Just keep changing until you find one. There are SOME out there who are better than others.
You can request a list of recommended NHS gp's from thyroid UK if you email louise.roberts@thyroiduk.org to see if there's any near you.
They probably won't be in now till Monday but I have the latest list if you want me to email it you before then PM me.
Thats great advice Salphy and I'm glad you were able to find someone more helpful with a bit more understanding. It gives me hope that I will get it sorted soon
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