How do i explain to my gp and get my dose increased

[suzafc]

My GP thinks that as my tsh and t4 are within range that everything is ok!

I have been hypothyroid for 21 years and the symptoms are worse than ever!

Tired barely get thru work and sleep on my commute in both directions. Cold the office temp set at 24 and colleagues want to open window and i have 3 layers and an oil heater next to my desk. my skin is dry and cracks easily. i have plantar facilitis which means i cant walk when i get out of bed takes about 5 mins to stretch feet and ankles to move. I struggle to lose any weight (obese) i have headaches often and my eyesight is deteriorating. I am currently on 125mcg levothyroxine.

Latest blood results

Tsh 3.84 mu/L range 0.35-5.50

Free T4 13.6pmol/L range 10.3-22.7

B12 324ng/L range 211-911

I have asked to have my FT3 and Vit d tested and will do this on Monday and see the gp again at the end of the week.

He has suggested maybe an inc of 25 mcg levo but according to british thyroid association guidelines whilst on thyroxine therapy is that my TSH should be below 2 and T4 in top third of range and they also suggest average dose of 1.6 mcg per kg of body weight which would give me a dose of 225mcg.

How do I get my GP to understand ( without telling him how to do his job) to raise my thyroxine by more than 25 or should i ask to see the Endocrinologist?

any advice welcome

Thanks

Sue

[shaws]

If you email [e-mail] and ask for a copy of the Pulse online article by Dr Toft, ex of the British Thyroid Association. Question 6 applies. He recommends a dose of meds to bring your TSH below 1. I would send your GP a copy of the whole article, so he can read and digest the information before your next appointment:-

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.

My TSH is 0.01. The article also goes on to say that some need the addition of T3 to a reduced t4.

[suzafc in reply to shaws]

Thanks. I was thinking of writing a letter to gp for him to read before my next appointment. I don't have an email but imagine i can drop a letter in at the surgery.

[suzafc in reply to suzafc]

i mean i don't have the doctors email

[shaws in reply to suzafc]

Yes, that's the thing to do. Just drop a copy of the article in for him to read before your appointment and then discuss question/answer of question 6 and discuss it with him.

If you haven't already had a vit B12, Vit D, ferritin, folate and iron as many are deficient in these and they should be in the upper level, rather than low or middle.

[suzafc in reply to shaws]

B12 324ng/L range 211-911

serum iron 29umol/L range 7-32 umol/L

Folate 5.6 ug/L range 2-11.5 ug/L

Getting vit d, ft3 tested tomorrow.

[shaws in reply to suzafc]

Although your B12 is within the normal range, I think it is too low and would supplement with methylcobalamin B12. You can get sublingual ones. Your iron is fine but your folate is low. This is an excerpt

Vitamin B12 and folate

Vitamin B12 and folate work together to help the body produce red blood cells. They also have several other important functions:

vitamin B12 helps to keep the nervous system (brain, nerves and spinal cord) healthy

folate is important for pregnant women because it reduces the risk of birth defects in unborn babies

nhs.uk/conditions/Anaemia-v...

[suzafc in reply to shaws]

There is 1mcg b12 in the multivitamin i have started taking, should i get a sep b12 one too?

Am I justified in asking to increase my dose from 125 to 200 or will I have to do 25 at a time?

[shaws in reply to suzafc]

sublingual methylcobalamin B12 is 1,000mcg or 5,000mcg . You cannot overdose on B12 tablets as excess is excreted in urine.

It is much better to raise levo by 25mcg each time till you feel you are symptom-free. You will then be aware when it is a bit too much, so it is easier to drop by 25mcg.

[suzafc in reply to shaws]

Can you get those b12 tablets on the high street or just the internet?

[shaws in reply to suzafc]

I have looked in the Holland and Barratt web but cannot see methylcobalamin B12. I got mine from Amazon and if you book through

thyroiduk.org.uk/tuk/go_sho...

Thyroiduk.org get a very small commission.

Remember the important word is methylcobalamin for Vit B12 as there are other types.

[Lizbeth1 in reply to shaws]

Does free thyroxine mean T4?

I have looked for dr Tofts book and I am not sure of the title of the most useful one

[shaws in reply to Lizbeth1]

Dr Toft has written a book called Understanding Thyroid Disorders (2008). You can buy it from Amazon through Thyroiduk.org. I believe many chemists keep copies too about £5. The article I refer to above is from [e-mail] is from Pulse online - question/answers. Your answer for free T4 is on

thyroiduk.org.uk/tuk/go_sho...

The following is about blood tests, and free T4.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

[KLR22]

I'm another one in a battle with my doctor to not just take the TSH test as the only level to judge dosage of thyroxine. Some doctors seem blind to anything else.

Good luck.

Karen

[shaws in reply to KLR22]

It would be good if GPs did the full thyroid function test but mainly labs, but I think he could ask for T4.