Help please

[Rosie2m]

Hi guys... just had these levels checked. Please can someone check if they’re ok? I’m only on 50mcg of Levothyroxine and will be fighting for an increase at my appt on Tuesday.. is there anything else I need to address? Tia x

[SeasideSusie Remembering]

Rosie2m

TSH is too high, the aim of a hypo patient generally, when on Levo only, is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their reference ranges, if that is where you feel well. Unfortunately, many surgeries now only test TSH which is completely inadequate. Your TSH tells us that you need an increase in dose, 25mcg now, retest in 6-8 weeks, repeat until your levels are where they need to be.

In support of your request, use the following information :

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.

ou can also refer to NHS Leeds Teaching Hospitals who say

pathology.leedsth.nhs.uk/pa...

Scroll down to the box

Thyroxine Replacement Therapy in Primary Hypothyroidism

TSH Level .................. This Indicates

0.2 - 2.0 miu/L .......... Sufficient Replacement

> 2.0 miu/L ............ Likely under Replacement

**

The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level of 100-150nmol/L, so you could do with improving your current level. Do you supplement with D3?

B12 is OK for a Total B12 test although an Active B12 test is more useful but the NHS don't normally do this.

Folate is recommended to be half way through it's range so yours could do with being higher. Folate rich foods will help, as will a good bioavailable B Complex such as Thorne Basic B or Igennus Super B.

Ferritin is on the low side, recommended is half way through range. 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

apjcn.nhri.org.tw/server/in...

[Rosie2m in reply to SeasideSusie]

Unfortunately my dr will only test tsh.. that’s all they seem interested in! I will print the info you have given me and request the additional paper. I was using vitamin d spray but stopped that due to burning mouth syndrome and not knowing the cause. X

[Rosie2m]

Dr won’t do those test unfortunately, they only care about the tsh, I do have a private test but will wait another few weeks before re testing x

[SeasideSusie Remembering]

Maybe the burning mouth is a reaction to the excipients in the Vit D spray, it does have quite a few and not everyone gets on with it. You may be better off using a purer form such as Doctor's Best oil based softgels which only has D3 and extra virgin olive oil. If you supplement with Vit D you also need the important cofactors - magnesium (helps the body convert D3 into it's active form) and Vit K2-MK7 (D3 aids uptake of calcium from food and Vit K2 directs the calcium to bones and teeth and away from arteries and soft tissues).

Burning mouth syndrome can be a symptom of hypothyroidism, it can also be caused by nutritional deficiencies (iron, B vitamins), plus other causes.

[Rosie2m in reply to SeasideSusie]

I stopped using the spray around 2 weeks ago and was hoping if it was the spray the symptoms would be gone by now but they’re not. The dr did say it could be nutritional deficiencies and that’s why she agreed to test the additional 4that I requested this time, it will be interesting to see what route she plans to go down to try and resolve the issues I’m having. X

[Rosie2m]

I was also using better you spray but it didn’t have vit k, after a few weeks i tried to introduce a magnesium capsule and it gave me serious allergy symptoms so I had to stop it. I will await my gp appt on Tuesday see if she sheds any useful info and then look for an alternative magnesium preparation. I hadn’t looked into b supplements yet as I was worried about introducing too much in one go x

[SlowDragon Administrator]

Vitamin D is pretty good ....aiming for at least around 80nmol

Folate on low side - supplementing a good quality daily vitamin B complex may be helpful, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

B12 appears good, but you can have functional B12 deficiency where results look normal, but not utilising B12 at cellular level

Have you been supplementing B12 ?

Ferritin on low side. Look at increase in iron rich foods...e.g. Liver or liver pate once a week

Push for 25mcg dose increase in Levothyroxine

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If they refuse you will have to get FULL Thyroid testing privately

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

[Rosie2m in reply to SlowDragon]

Thanks slow dragon, I have got the test I ordered from thriva that I haven’t used yet but I was hoping to get my dose increase and then test again in a month or so. This whole condition is getting so expensive 😩 xx

[SlowDragon Administrator in reply to Rosie2m]

Perhaps Try a different GP within your GP practice.

[Rosie2m in reply to SlowDragon]

The dr I saw Thursday was a different one, she has seemed really good so far. Agreed to all my testing and to test early but she doesn’t work everyday(I wasn’t aware) so another dr reviewed the results with no real idea of my whole background so has just accepted it as being ok. I will see her again next week and want to go armed and prepared with all the info I need to push again. Thankyou for all your help xx