"Normal - no action", despite symptoms popping up again

[Jalisi]

After Levo increase on 18.04. to 50 I started to feel better within a week. My symptoms have returned - 3 weeks ago - anxiety, had a total meltdown last Saturday. Fatigue, sleepiness, brain fog, lack of concentration, forgetfulness, body aches, goitre, neck pain, tight throat, cough, hoarse voice, long period with spotting...

I called my surgery hoping to have my dose adjusted two weeks ago and was asked to have another blood test. My NHS 06.06.19 test came back TSH 1.9 [0.35 - 5.5] down from 3.4 Mar 2019 TPO 89 [0 - 50] down from 180 in Oct 2019 "normal no action". All based on NHS bloods.

I saw the GP today and was refused the increase instead offered an Endo referral. I told her I can't wait for another 6 weeks feeling like this. I went to see an Endo on 10.04.19 who said my dose needs adjusting by my symptoms and optimal TSH is one within the range but symptom free. Totally went over her head.

I'm planning to go and see the GP (who I manged to persuade to start my treatment) on Monday not sure this will make any difference, however I would like to gather any information that might help me to "present my case".

Oh, just to add, when I told her I've been taking vit D, Iron and Selenium (i take more supplements but didn't want to overwhelm her) she said this will have no effect on my thyroid hormone or antibodies levels. I kept the gluten, dairy and sugar theory to myself.

Thank you in advance, I really appreciate it.

[SeasideSusie Remembering]

Jalisi

My NHS 06.06.19 test came back TSH 1.9 [0.35 - 5.5] down from 3.4

I'm planning to go and see the GP (who I manged to persuade to start my treatment) on Monday not sure this will make any difference, however I would like to gather any information that might help me to "present my case".

Just testing TSH is inadequate, FT4 and FT3 should also be tested. Some evidence to take to your GP:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):

"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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

[Jalisi in reply to SeasideSusie]

Thank you SeasideSusie, I have followed your advice. So grateful for your help x

[Angel_of_the_North]

No point telling GP about supplements (or antibodies) - they don't understand them and believe that the government directives on "healthy diet" and 5-a-day are all we need. Discussing it just makes you both cross and stressed.

[Jalisi in reply to Angel_of_the_North]

Thank you Angel, it's really worrying. I studied Veterinary Sciences and Biology and this lack of knowledge really makes my brain hurt.

[Jalisi]

I managed to get my levo increased to 75 mcg, but only after confessing I increased the dose myself. GP wants to repeat blood test in 6 weeks, she will request t4 and t3 tested. If my blood test will be abnormal she will reduce my dose even if I feel better. All of this over the phone!

I'm already dreading the next conversation with her, this is exhausting.