High TSH, normal T4: Hi everyone, I'm new here... - Thyroid UK

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High TSH, normal T4

Blaziken profile image
14 Replies

Hi everyone, I'm new here.

I got the results from my TFT and they are this:

TSH 13.08 mU/L (0.35 - 5.50 mU/L)

Free T4 10.8 pmol/L (10.5 - 21.0 pmol/L)

The TSH is obviously quite high but the T4 is just in range. I feel so tired and achy. Will I have to repeat in 3 months or will I just get treatment? Unfortunately it's a while until my GP appointment so just hoping to hear experiences.

Thanks.

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Blaziken
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14 Replies
SlowDragon profile image
SlowDragonAdministrator

Is this your first abnormal test?

Was test done early morning around 9am to get highest TSH

with TSH over 10 you should be starting on levothyroxine

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

GP may want to retest in 6-8 weeks

Request GP test thyroid antibodies and vitamins NOW

low vitamin levels very likely when hypothyroid

 

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

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

Blaziken profile image
Blaziken in reply to SlowDragon

Thanks for your reply. This was my first abnormal result and was done at 430 in the afternoon. I will ask for the other checks, they sound like a very good idea.

I'm hoping I will just get prescribed levothyroxine, I want to start feeling better!

SlowDragon profile image
SlowDragonAdministrator in reply to Blaziken

Had you tested 9am TSH likely at least over 16

With TSH over 10 you should immediately be starting on levothyroxine

Dose levothyroxine is typically started at 50mcg

Dose is increased slowly upwards in 25mcg steps over 6-12 months. Bloods should be retested 6-8 weeks after each dose increase

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.

lisabax profile image
lisabax

I just wondered if you could email or get a phone consultation with your GP and ask, given your results if he/she could start you on thyroxine straight away? It does take a while to start having an effect , so the sooner the better really 🌷

Blaziken profile image
Blaziken

Thanks. I've tried calling a couple of times but my GP is currently only doing emergency appointments because of Strep A. I've been told someone will call me next week which I suppose isn't so bad. I'm just very keen to start treatment and hoping they don't want to just wait and test again.

serenfach profile image
serenfach

Next week could be next Friday! I would not wait - I would phone and say if the GP cannot speak to me this week, I am going to go to A+E as I feel so awful. (they hate that, and A+E would contact the GP and tell him off). Not even phone appointments because of strep A? That is rubbish! Ask to speak to the practice manager and say you cannot work at the moment, you are feeling so bad - lay it on thick! All you are asking for is 5 minutes of his time, all he has to do is glance at the results and print a prescription - a 2 minute job! Good luck and come back here if any further problems.

klr31 profile image
klr31

Hopefully your GP might leave you a prescription for thyroxine to start you off.

Blaziken profile image
Blaziken

I finally got to speak to my GP. She is repeating the blood test today and has prescribed thyroxine 50mg which I should start if today's blood test is the same. I'm now wondering if it could have just been a one off? I'm going to be quite confused if today's test is normal.

tattybogle profile image
tattybogle in reply to Blaziken

Your first results were pretty 'bad' ... very unlikely to be normal now .

but she's doing the right thing by doing a repeat to rule out a one off.

she's not making you wait long to do it since those results are very hypo and if correct , it needs sorting fairly quickly. If they were more 'borderline' ie just TSH was slightly over range and fT4 was comfortably in range then waiting 3 months for retest would be usual, but with results that are as clear as your were, waiting 3 months when you feel so rough is not a good idea.

What time is blood test being done today ? ... just be aware that TSH is highest around 9am ,lowest around 12-2pm, then higher again as the evening goes on ... so unless both done at same time for comparison there will appear to be some difference, even if there isn't 'really'

Blaziken profile image
Blaziken in reply to tattybogle

The blood test is not until 4:40pm. The last one was done at the same time so I guess that's good!

tattybogle profile image
tattybogle in reply to Blaziken

well at least it will be a true comparison. in future , once they are trying to assess and adjust your dose, try hard to get bloods done consistently at 9 am.

The receptionists won't agree time is important when booking thyroid blood tests , .... rather than argue with a brick wall , it's usually easier to just say "sorry i can't make that one due to work hours .. can you find me one first thing a.m."

The danger of having future bloods done at 4pm is that the TSH will look lower and the GP may say "that's enough Levo, i don't need to increase dose " , when it probably isn't enough.

Blaziken profile image
Blaziken in reply to tattybogle

Thanks for the tip, I will definitely do that for next time.

Blaziken profile image
Blaziken

New result:

TSH 16.08 mU/L (0.35 - 5.50 mU/L)

Free T4 10.4 pmol/L (10.5 - 21.0 pmol/L)

I guess that confirms it. No result for antibodies yet.

tattybogle profile image
tattybogle in reply to Blaziken

yep ...seems so .

Welcome to the club :)

(it s a bit of a rubbish club to be in .... are you sure you don't want to reconsider and join something more exiting... sea scouts ?... hang gliding ?)

looking on the bright side , at least you have found this forum now., rather than 17yrs after diagnosis like i did .. so keep us updated with how you get on and test results ...and people who've already been there and bought the T=shirt can help you go up the Ladders and miss the Snakes .

.. it's often an "up / down , two steps forward /one step back" kind of journey to feeling consistently better again from where you re now , with a lot of patience and waiting involved while your body adjusts to increases in hormone levels. It has got used to trying to function without enough and it will take it time to start to work properly again .. and it will take your GP several months to find what is the best dose for you ...so don't expect miracles by Christmas, but one foot in front of the other will get you there and hopefully by spring you will be feeling much more 'springy' than you do now ....in the meantime , be kind to yourself .

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