I would appreciate some advise regarding my levothyroxine.
I was prescribed 50mg in February after my GP tested TSH and reviewed how it had been over last 3 years - it was around 6 and my T4 12 when he agreed to prescribe. They checked my tsh again last week (no other thyroid tests done) and TSH was 2 so no change to medication.
However, after a lovely period of a month of having no sore throat, reduced puffy face and not as tired - I am starting to feel a bit rubbish again! My throat is so painful, but nothing to see from outside. I’ve had a cherubic sore throat for a few years. Would it be advisable to request a small increase?
For information, I also have low b12 and ferritin which I am working on increasing (I strongly feel my b12 is having a huge impact so I am sourcing and doing my own IM injections) with support from a B12 support group.
The last GP stated she thinks I have lupus and sjorgrens and refered me to rheumatology. I’m not so sure - there is a family history but I also wonder if many of my symptoms are under treated thyroid and b12?
Written by
KRex
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Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.
Testing just TSH is completely inadequate. We need to see TSH, FT4 & FT3 to properly assess thyroid function.
Most people feel well when their TSH is at or just under1, so yours at over 2 is too high and you should push for a dose increase of 25mcgs. Ask for it as a trial which often goes down better.
Point out to GP the NICE guidelines stating a starting dose of weight in kilos x 1.6 = final dose approximately. nice.org.uk/guidance/ng145
Are you vegan or vegetarian? If not you should be discussing low B12 with your GP regarding pernicious anaemia.
What was your B12 result with reference range?
With B12 injections its recommended to take a B complex which would also contain folate. This is because the B vitamins work together and you need good levels of them all for the B12 to work well.
What are you doing for raising ferritin? Have you also had an iron panel test?
Vit D is a cofactor of B12 and most people have low levels. Suggest you get that tested.
At this point I was prescribed 5mg Folic Acid per day for 4 months.
Mid Feb another TSH test which came back at 5.3. I then also had a private one which had TSH at 6 and T4 at 10. GP then prescribed me 50mg Levothyroxine and advised to retest in 4 months.
Most recent bloods (last week)
TSH – 2 (0.2- 4)
B12 – 251ng/l (211 – 911)
Ferritin – 47ug/l (10-322)
Folate – 23.6ug/l (5.4 – 24)
GP said no need to increase my levothyroxine and as my TSH was normal no need to test T4 - and no further folic acid needed. I asked again about B12 and she pretty much laughed in my face and said that my symptoms are not B12 related (I argue this as some seem fairly classic!) and she instead thinks I have Lupus and Sjorgrens and has referred me to rheumatology (which I think will be rejected as all my autoimmune bloods come back normal)
I regards to iron I have started to take 20mg once per day as I was taking spatone which I have learnt came be a bit useless in raising iron levels. I don't think I have had a full iron panel and unlikely to get one as my results are within their range. I also take Betteryou D3 and K2 spray which I believe is 75ug. I have ordered everything I need to start my own b12 injections and plan to carry on with a vit b complex, iron and vit D.
The GP laughed when I queried my low Vit D and B12 and said most of the UK is deficient so really I am normal.
I'm not vegetarian, but GP said they won't test for PA as my results are normal.
GPs get no training in nutrition so your GPs responses are not surprising.
Most people need 3,000iu vit D (+K2 to help it go to your bones) a day minimum to get their level to optimal. Check you are taking that. One of the Better You sprays is 1,000iu per spray.
Have you continued to supplement folate? As soon as you stop the folic acid supplement your level will begin to fall back to where it was in the first place.
Be sure that you have taken PA testing as far as you possibly can before beginning further B supplements. Give it a weel or 2 after starting B12 before introducing a B complex. This will keep all your B vitamins in balance as they work together.
B complex suggestions: Slightly cheaper options with inactive B6:
To raise ferritin its recommended to increase iron rich foods unless you've had an iron panel done and know you have room to supplement.
my interpretation.
Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc
If one GP turns you down for a dose increase then keep going back and ask a different doctor. Don't give up! Ask for it as a trial, its the squeaky wheel that gets oiled.
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