I've been feeling so ill for months now so did an eConsult & got a call to have bloods done Ive just seen my results on line & my TSH is 8.53(range 0.34-5.6)..the GP has marked the results No Further Action needed. My T4 is half way 14.3(7.5-21.1). My D3 is fine 96(60-150) & my Vit B12 os high 1116(11.-914). I have bought myself a D3 & Vit B12 sprays for under my tongue..so obviously working!!
Im on 100mcg daily of levothyroxine...so do you think I should increase it to 150/day? If I ask for the 25mcg tabs they are not Accord they would have to be Tiva!!
I feel extremely tired & brain dead.. balance not good. Ferritin ok at 62(20-180)?
Help pleeease. Thank you Polyanna
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PolyannaYorkshire
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GP obviously is totally ignorant of how to treat hypothyroidism.
Im on 100mcg daily of levothyroxine...so do you think I should increase it to 150/day? If I ask for the 25mcg tabs they are not Accord they would have to be Tiva!!
No, increments should only be 25mcg, sometimes less, never more.
25mcg tablets are made by others - Wockhardt, Advanz (Mercury Pharma and Eltroxin), Glenmark. If you already take Accord and are happy with that brand then you could ask for 50mcg tablets and cut in half rather than risk a new brand.
I would ring and ask for an appointment with your GP and point out that your TSH is way too high, using the guidance as support for your request for an increase pointing out that the aim is for you to be symptom free and feel well (your GP may be appreciative of being educated!):
Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication 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 confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw
You can obtain a copy of the article which contains this quote from ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
My D3 is fine 96(60-150) & my Vit B12 os high 1116(11.-914). I have bought myself a D3 & Vit B12 sprays for under my tongue..so obviously working!!
You no longer need the B12. Are you also taking a B Complex which you should be doing when taking B12? Now you can drop the B12 and just continue with the B Complex for maintenance. Thorne Basic B is a good one and popular here.
How much D3 are you taking and are you taking it's important cofactors - magnesium and Vit K2-MK7?
The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.
Ferritin ok at 62(20-180)?
This is on the low side. Ferritin is recommended to be half way through range (100 with that range) and some experts say that the optimal level for thyroid function is 90-110ug/L.
You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
Don't consider taking an iron supplement unless you do an iron panel, if you already have a decent level of serum iron and a good saturation percentage then taking iron tablets can push your iron level even higher, too much iron is as bad as too little.
Thank you SO much for your help. Im going to print it off & look at the papers you suggest.I stopped my Vit B complex when I started the B12 drops I didn't realize I should be having both.. I thought my B 12 was too low ( symptoms!!!) & my grandmother died of PA.. so now I know its not too low B12 causing my symptoms... Perhaps the levo!!
I have liver once/week/the D3 drops contain K2. 75ug (3000 IU) of Vit D3 &. 75ug of K2
I use a magnesium spray on my legs at night. I sleep very badly av 4hrs/ night!!
I will order the 50 mcg of levo & cut them in half. I take my levo at about 4am when Im awake
Before we supplement with B12 we should request a blood test to exclude Pernicious Anaemia.
I note your grandmother had this condition so I would definitely get a B12 blood test as this condition can run in families. My mother had P.A, and I also have this too.. I used to get quarterly B12 injections (stomach cannot absorb B12) but now I get a monthly one.
I would ask for a check to ensure you do not have Pernicious Anaemia. If you have P.A. you need B12 injections about every 2 or 3 months.
Hi... My blood result showed that I now have my B12 at a decent level it was low (but GP still didn't worry & said it was OK).It is now over the guide (110-914) it is 1116. Looks as if its maybe my levothyroxine level that is causing me to feel so ill... Were in process of selling house & moving too so not a good time to feel rough! Thank you for your help. Polyanna
Shame on the GP marking your blood test as nfa. Clearly he is working on guidelines before you started treatment. On treatment the TSH should be 1 or under.....lol. You most certainly need an increase in levo. 25mcg at a time and then retest in 6-8weeks. I would see a different GP in the practise and show him/her the guidelines for treatment as posted above by seaside susie. If you havent already I would invest in a good book like Living with your Thyroid by Barry Durrant-Peatfield. Doctors are incredibly ignorant about hypothyroidism and effective treatment so you need to be a patient expert. Knowledge is power so going well armed and from a position that you can give a clear calm arguement for an increase you are more likely to be able to win your case.
A persons TSH should be around 1.00 with optimal T4 and T3 levels that suit you. My private endocrinologist explained this to me. He also said any TSH over 2.5 and you’ll have negative symptoms. Your GP is so wrong to say no action. You could request a referral to an endocrinologist either NHS for starters or private. Private would be much quicker. You could also speak to your surgery manager and ask them why your GP has put no action and suggest you want and need urgent action. There is a PALS process too to express your concerns with. If you mention PALS to the surgery manager I’d bet they’d act very quickly from no action to action.
Sometimes you have to push GP’s to get the rightful treatment you require.
I would get in touch with the Practice Manager and ask her/him to ask the GP why the NFA when your results are so poor. She/he can then arrange a prescription for more Levo, and it will be in your notes that this happened, so the GP is more careful in future.
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