Advice please

[Auders]

Dear lovely knowledgeable people your excellent advice please, I've just got back from the GPs and I'm very deflated. Results from MMH on 10/10 were FT3 3.8 mmol/L (3.1-6.8), FT4 20.3pmol (12-22) and TSH 2.3mu/l (0.27-4.2). 25/7 were FT3 4.1, FT4 17.2 and TSH 3.77. TSH at GP was 2.1mul/L (0.3-4.2) on 10/10. Apparently the GP contacted Endo for advice as my Cortisol was raised 532mmol/L (166-507) on 8/9. According to Endo nothing wrong with results and looking at my thyroid results I shouldn't be on any meds as I'm borderline. I feel so upset, GP agreed to keep me on 75mcg dose.

The question is where do I go from here? I have seen improvement since being on Levo, but as of yet I still dont feel that I have a life yet. She said she understood all the symtoms but she couldn't go against the advice of a specialist.

Vit D 99mmol/L (was 93 in July) so going up slowly, taking Nature Provides Vit D +K2 Mk7.

Active B12 more than 300 (in July) taking Thorne B Complex

Folate 15.4 ug/L in August

Serum Ferritin 48ug/l (13-150) Now having liver once a week, Make some chicken liver pate and eating pumpkin seeds.

Any suggestions? Carry on plodding along? See private Endo, could afford consultation fee but dont think I could afford private prescriptions every month, to be honest I dont know how much it would work out to. Or do I ask for PM for advice where people buy it from?

[SlowDragon Administrator]

Roughly where in U.K. are you

Yes….Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

[e-mail]

Approx how much do you weigh in kilo

Likely to need further increase in levothyroxine once you get ferritin higher

Which brand of levothyroxine are you currently taking

Have you tried splitting levothyroxine taking half dose waking and half at bedtime…..

[Auders in reply to SlowDragon]

Thanks for your swift reply. I have sent for the list of Endos and private Drs. I live in the East Midlands, so not a huge choice. I'm on 50mcg Accord and take 25mcg Wockhardt at bed time. I'm 100kgs. GP is not going to want to increase my Levo, was a big thing that she wasnt taking off me. I took my Dio2 report in, showing one half of the dodgy gene, she looked at me aghast and asked me what it meant! Said it recomends a trial of T3 could help, but obviously I wont be getting that on the NHS! Not going on holiday until next year so that would be a wait. I'm at a loss really. I was wondering about asking where I could get T3 from privately just to give it a go? I really

[SlowDragon Administrator in reply to Auders]

Will pm you

[SeasideSusie Remembering]

Auders

Active B12 more than 300 (in July) taking Thorne B Complex

Is that 300 result a typo? The usual range for Active B12 is 37.5-188 or 25.1-165 and it's unusual for them to measure that high over range as there is a top limit the equipment measures to. Who did this test?

[SlowDragon Administrator]

Who did testing in July

Active B12 more than 300

Are you sure that’s active B12 …..not serum B12 ?

Medichecks just lists Active B12 result as >150

Folate 15.4 ug/L in August

What’s the range on folate result

100kilo = 160mcg levothyroxine as likely dose required per day

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

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.

[Auders in reply to SlowDragon]

I tried to send a screen shot of results. It was done by Forth. It just said active B12 so I’m at a loss I’m afraid? But thanks for input 🙏 Folate was done by Onlinedoctor (Superdrug), didn’t really give a range other than it was more than 2.9ug/L