Help with results and GP recommendations - Thyroid UK

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Help with results and GP recommendations

RachelChD profile image
16 Replies

I have been struggling with Hashimoto since 2016 probably undiagnosed for a long time. My TSH results at the GP have always been around 3-4 and the GP always said your results are in range but I was feeling knackered.

I have seen a few a functional medicine doctors over the years while they have helped me with the diet, and supplements, they never told me if I should take levothyroxine and I took thyroxal for a while. I don't trust going back to the GP and would like some recommendation via DM to find a Thyroid specialist GP, I have looked at Georgina Conway. You insight about these results and GP recommendations via DM will be welcome.

I recently did a test at Randox Health and the results are the following

TSH 7.87mLU/l High

FT4 16.40 in range

FT3 4.18 in range

Anti -Tg <115 in range

TPO 89.2 high

B12 477 ng/l in range

Vitamine D 118 mmol/L in range

Iron 31.9 umol/l in range

Ferritin 103.8 in range

Total Iron Binding capacity 44. 1 <44.8 Low

Transferrin 1.91 <2.0 low

Transferrin saturation 72.3 >50 high

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RachelChD
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16 Replies
SlowDragon profile image
SlowDragonAdministrator

Well you’re clearly hypothyroid and need starting on levothyroxine

Standard starter dose of levothyroxine is 50mcg

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Likely to need further increases over coming months

How much levothyroxine were you taking previously

Dose levothyroxine should be increased slowly upwards in 25mcg steps until TSH is around 1

Most important results are always Ft3 and Ft4

No folate result

B12 on low side

Have you had coeliac blood test done

Are you on strictly gluten free diet

SlowDragon profile image
SlowDragonAdministrator

Suggest you start on 50mcg levothyroxine

Get bloods retested in 6-8 weeks

Likely to need further increase then

Which brand of levothyroxine have you tried. Many people find different brands are not interchangeable

Repeat increase and test after 6-8 weeks as necessary until TSH around 1 and symptoms improved

Meanwhile Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors

tukadmin@thyroiduk.org

Guidelines on dose levothyroxine by weight as eventual dose required is approx 1.6mcg levothyroxine per kilo per day

RachelChD profile image
RachelChD in reply to SlowDragon

Hi Thanks a lot for your help. I have never been on levothyroxine up to now the GP never felt I needed it and said it could be dangerous for me to take it. I have tried Thyroxal which is a natural beef thyroid supplement. Do you have a brand you recommend?

SlowDragon profile image
SlowDragonAdministrator in reply to RachelChD

With TSH over 5 and high thyroid antibodies you should be prescribed levothyroxine

Take these results to your GP

They will need to retest via NHS first before starting you on levothyroxine

Book earliest appointment, ideally before 9am

Being diagnosed as hypothyroid also gives you free prescriptions going forward

What vitamin supplements are you currently taking

Important to stop taking any supplements that contain biotin a week before all blood tests as biotin can falsely affect test results (it’s used in many lab tests)

Starting levothyroxine - flow chart

researchgate.net/figure/Flo...

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

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.

RachelChD profile image
RachelChD in reply to SlowDragon

Thank you for your help! I will go and see the GP.

SlowDragon profile image
SlowDragonAdministrator

Nice flow chart here

gps.northcentrallondonccg.n...

humanbean profile image
humanbean in reply to SlowDragon

The flowchart does not mention Central Hypothyroidism, which is a huge oversight.

SlowDragon profile image
SlowDragonAdministrator in reply to humanbean

Does have a box for secondary hypothyroidism

Also interesting comment that 9am cortisol must be over 200nmol before starting on Levothyroxine

humanbean profile image
humanbean in reply to SlowDragon

Sorry, I had never noticed the box mentioning secondary hypothyroidism. I just looked at the flowchart itself.

I had never seen the 200nmol/L advice before either. That must be the result of an early morning blood cortisol test. How many of us have had one of those? I haven't, as far as I was aware.

SlowDragon profile image
SlowDragonAdministrator in reply to humanbean

I had numerous adrenal tests …..ACTH…. 24 hour urine cortisol test …. SST

Pheochromacytoma test

Pituitary blood test

MRI Brain scan etc etc etc

None of the tests showed actual issue ….. low FT3

humanbean profile image
humanbean

It would be helpful if you had included the ranges for your results. You can edit your ppost by clicking on "More" (beneath your first post) then "Edit", make your changes, then Post again.

RachelChD profile image
RachelChD in reply to humanbean

Hi Thank you for your reply I will try to update everything.

Lulu2607 profile image
Lulu2607

Hi Rachel. As your TSH is just out of range and your T4 and T3 are in range the Dr may regard you as subclinical hypo and suggest watching and waiting until your TSH is higher eg 10 before treating. You're right about your GP being wary of levo and not wanting to give it out 'unnecessarily' (in their eyes), so you may find your GP reluctant to treat just yet. If your T4 was also under range he/she might reconsider. I'm not saying that this is the right approach for you as you also have symptoms which your doctor should take into account. I'm just letting you know how a lot of Drs approach hypothyroid, often because they are not that knowledgeable about it. As you have antibodies it's inevitable that your TSH will get higher as the antibodies gradually destroy your thyroid so your Dr should be vigilant. I was borderline hypo in Dec 19 with high TSH and low T4,(only just in range), with antibodies detected in 2014. Because of Covid/lockdown etc my thyroid wasn't tested during 2020 during which time I started getting very ill. Eventually it was tested again in April 2021 when I was severely symptomatic, and my TSH had escalated to 161 and no T4 detectable, so things can change quite quickly. You need to nip it in the bud before real problems set in.

RachelChD profile image
RachelChD in reply to Lulu2607

Hi Lulu, thank for your insight. I've always heard from functional medecine practitioner that the ideal number for TSH should be under 2. I understand where you're coming from and the GP as well but I have been struggling ever since feeling sluggish. I might look into booking a GP who is a specialist in this area.

SlowDragon profile image
SlowDragonAdministrator

Many of us have been diagnosed with TSH over 5 but under 10

Especially if thyroid antibodies are high

Pearlteapot profile image
Pearlteapot

Hi Rachel. If I’ve understood your results correctly you have a transferrin saturation rate of over 70 against upper reference range of 50 and a low TIBC. Has your doctor commented on these results which seem to show iron overload despite in range ferritin ?

Shouldn’t you be tested for haemachromotosis ? Iron overload can affect the functioning of the pituitary or thyroid leading to primary or secondary hypothyroidism I’ve read somewhere that treatment for haemachromotosis can (sometimes) improve thyroid function

I have similar results to yourself My GP wants to wait and re-test and has been waiting since March. I am testing with the haemachromotosis society uk, the patient group charity who offer a discount I’m on my phone so links difficult but easy enough to find

redriverhealthandwellness.c...

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