hoping someone on here can advise me on the best approach to take to get my GP to take action!
Every blood test bar two that I have had over the last 5 years has shown high TSH, generally between 6 and 10, and always over the high reference range. However, despite several GP visits they refuse to treat, instead giving me the brush-off that these things often return to normal in their own time and they will re-test in 6 months. 6 months pass, same results, same brush-off!
I have now had an Anti TPO test with the following results:-
ANTI THYROID PEROXIDASE 75 iu/mL [0.0 - 9.0]; Positive anti thyroid peroxidase antibody
Consistent with risk of autoimmune thyroid disease
Does this mean that I definitely do have thyroid disease? I want to be prepared with enough knowledge and information to access treatment in the event of another brush-off!
For added context, I suffer from chronic migraine that has all but destroyed my life and am desperately looking for a 'cause' that I can treat to help with this.
Also osteoporosis, chronic vitamin D deficiency, depression, fatigue, etc. And I have been diagnosed with fibromyalgia which I suspect is potentially hypothyroid disease in disguise.
All advice will be very gratefully accepted
D x
Written by
DearD
To view profiles and participate in discussions please or .
At least 2 tests over the reference range, but below 10 are consistent with Subclinical hypothyroidism and according to NICE guidelines, a 6 month trial of Levothyroxine is recommended. In reality 6 months may not be enough.
Positive TPO with 2 TSH over range but below 10, alongside you have have symptoms consistent with hypothyroidism is reason enough to warrant a trial. Furthermore, most GPs are more confident to treat with a positive TPO result and over range but below 10 TSH as any healthy person would not have any antibodies.
Absolutely you should be offered trial of levothyroxine …..after two separate tests with TSH over 5 ……but ESPECIALLY as you have high thyroid antibodies (autoimmune thyroid disease also called Hashimoto’s)
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
TSH should be under 2 as an absolute maximum when on levothyroxine
Dig deep. Remember, you are not there to serve them. They are there to make you well.
Use a very concise bullet point list for your call and refer to it constantly and repeatedly.
One the points you should have on that bullet list is that “NICE GUIDELINES” recommend trial for treatment for subclinical hypothyroidism.
However, a high TPO is unlikely to met with an argument. It’s if these either or tests not like the TSH where they can claim you a re well when you are not.
Thank you for this, I've just re-read them and realise that I've been ill with this for 5 years now. Annoyingly my GP was right about my levels coming down without treatment though, even though they remained out of range, between 5 and 8 mostly. I feel quite embarrassed that I've allowed myself to be fobbed off for so long. They will only allow me a telephone appointment though so I don't see it going well.
A) started on trial 50mcg level as per guidelines.
Quote guidelines that clearly state …..if you have symptoms, high thyroid antibodies and TSH over 5 on 2 blood tests you should be offered a 6 months trial on levothyroxine
Bloods retested in 6-8 weeks. Book early morning appointment, ideally 9am latest
You WILL need further increase in dose further down the line ……but cross one bridge at a time!
B) B12, folate, ferritin and Vitamin D are tested NOW as per NICE guidelines for autoimmune thyroid patients
C) that coeliac blood test is done - as per NICE guidelines
print out all official guidelines documents and have them in front of you and be ready to read out relevant information
Suggest you highlight 2 or 3 short sentences that are relevant
When I was being fobbed off by GP re Levo increase, I referred her to Thyroid UKs suggestion that following private blood test of TSH, FT4+FT3 (GP surgery never tested FT3), I was in need of an increase. She agreed. Breakthrough! Trust you get your breakthrough.
Are you seeing the same GP or different GP's? Maybe try and see a different one and go with the attitude that you're not walking out without treatment.
Print off the NICE guidelines where it says you can be treated with 2 TSH results above range 3 months apart.
Much about getting well with a thyroid condition is learning to advocate for yourself and not be fobbed off. If they tell you no the first time then go back and ask again or try someone different.
Take with you print outs of relevant medical literature like NICE guidelines to back yourself up.
Your vitamins will be low with a thyroid condition as it causes low stomach acid which means you can't absorb vitamins well from your food.
Get your levels tested and start supplementing and it will help how you feel even before treatment.
I know I shouldn't allow them to fob me off, but I feel sick at the thought of arguing with them. My husband will be with me but I'm only allowed a telephone appointment and find it much harder to push a point when they can just randomly say "we're done now, goodbye" and hang up - this has actually happened to me on a call lasting 52 seconds! Honestly if we won the lottery we've said the first thing we would do is get a complete private healthcheck and treatment
As others have said. Make clear bullet points on paper for yourself. Quote NICE guidelines. Be firm and polite. A Drs job is the help you get well. Your TSH should mirror a healthy persons thyroid TSH blood result of 1-2. Never over 2.5 or symptoms will start above 2.5. My gp left me until my TSH was 36! By that time I was in a hell of a mess. It’s criminal it really is. Why on earth are they not helping people get well. Then they wouldn’t have constant calls or appointments. Why won’t they do face to face consultations either. Maybe change your GP practise they are after all run like small businesses Some are better than others
My route to getting my health back was going private. It’s not as expensive as you’d think either. In all I paid around £600 to be diagnosed and receive medication which was a huge success. I now enjoy much better health and NHS treatment too. As my private only endocrinologists is very superior in the health world and my gp jumps if I mention his name.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Help before GP appointment
Advice before seeing Endo, is it worth the battle?
Advice before GP visit please
Suspect I'm hypo - advice on blood test results before I see a GP please!
Further Advice Please before GP Appointment
