TSH help: Hi. Sorry for a long one. I’ve had some... - Thyroid UK

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TSH help

Mum69 profile image

Hi. Sorry for a long one. I’ve had some great advice here in the past primarily because of a high TSH. I’ve been UA for 28 years and currently on 100mcg. I’ve have had T4 and TSH done about 8 times in the past year with a consistently high tsh ranging from 9.28 to 21.3 (range 0.27-4.20). My most recent last week was 13.7. FT4 has been in range and FT3 only done when I got it done privately with Medichecks - 3.6 (range 3.1-6.8). Getting it done privately showed incidental findings of low folate, B12 and Vit D. My GP preferred to redo them and I have a telephone consultation tomorrow to discuss. I have the copies to have in front of me when he phones. Throughout this time my GP has said I do not need an increase of Levo. I disagree but my question is where can I quote from, with actual evidence that an increase is warranted as because we all know, listing your symptoms alone does not work. If anyone can help I would be extremely grateful so that I can be forearmed if possible. Thank you in advance.

23 Replies
SeasideSusie profile image
SeasideSusieAdministrator

Mum69

From GP online - TSH maximum of 2

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

From the British Thyroid Foundation, TSH can be low or suppressed:

btf-thyroid.org/thyroid-fun...

How can blood tests be used to manage thyroid disorders?

.....

Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.

There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.

.....

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication 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 this article from Dionne at ThyroidUK:

tukadmin@thyroiduk.org

print it and highlight Question 6 to show your GP.

Mum69 profile image
Mum69 in reply to SeasideSusie

Thank you so much.

SeasideSusie profile image
SeasideSusieAdministrator in reply to Mum69

You're welcome 😊

Let us know how it goes.

Mum69 profile image
Mum69 in reply to SeasideSusie

Will do thank you.

SlowDragon profile image
SlowDragonAdministrator

Something odd going on

Previous post with Medichecks results

healthunlocked.com/thyroidu...

TSH ludicrously high…..yet Ft4 at top of range

Ft3 right at bottom of range

Do you always get same brand levothyroxine at each prescription

Always take levothyroxine on empty stomach and then nothing apart from water for at least an hour

Was test done BEFORE taking levothyroxine

Vitamin D, folate and B12 all too low and need improving to optimal

Mum69 profile image
Mum69 in reply to SlowDragon

Thank you for your reply. I take the north star brand and am not aware of taking any other brand. I try to take Levo on an empty stomach but I’m not consistent. On the morning of my test I had no Levo and had an empty stomach.

SlowDragon profile image
SlowDragonAdministrator in reply to Mum69

Northstar 50mcg and 100mcg are Accord

Northstar 25mcg is Teva

Try taking levothyroxine at bedtime….must be minimum of 2-3 hours after eating or drinking anything other than water

Can be more convenient….possibly more effective

Absolutely essential to have OPTIMAL vitamin levels

That invariably means supplementing virtually continuously

Vitamin D at least around 80nmol and around 100nmol maybe better

Active B12 at least over 70

Serum B12 at least over 500

Folate at least half way through range

Mum69 profile image
Mum69 in reply to SlowDragon

Thank you. I am hoping the low vitamin levels will be addressed tomorrow too. Thanks again for your advice.

SlowDragon profile image
SlowDragonAdministrator in reply to Mum69

NHS only tests and treats vitamin deficiencies

So only if vitamin D is under 50nmol

(a few CCG areas will prescribe if under 75nmol)

B12 and folate, if results are within range unlikely to treat

Mum69 profile image
Mum69 in reply to SlowDragon

B12 is 170 (range 197-771)Folate is 2.2 (range 3.9-26.8)

This is lower than Medichecks about a month ago so hoping for treatment, GP commented at that time that they were ok! Was started on Vit D as it was 42 (range 50-200)

SlowDragon profile image
SlowDragonAdministrator in reply to Mum69

Both B12 and folate are both very deficient

You MUST have testing for Pernicious Anaemia before starting on B12 injections and folic acid supplements

See different GP ASAP

Low B12 symptoms

b12deficiency.info/signs-an...

Mum69 profile image
Mum69 in reply to SlowDragon

Thank you. I’m so glad I found this group this is again, information I would not have known. I hope the GP does what you suggest but if not I feel more able to challenge it. Thank you again.

SlowDragon profile image
SlowDragonAdministrator in reply to Mum69

Suggest you also post B12 and folate results on here too

healthunlocked.com/pasoc

Mum69 profile image
Mum69 in reply to SlowDragon

Thank you

You look to me to be under medicated. If you get no joy from your docs you could do as people do which is to self source Levo and possibly liothyronine- it’s not hugely expensive online - and trial increasing dosage to see if it helps your symptoms (it almost certainly will). But I think first step is to ask for a referral to an Endo. Make a formal complaint at the surgery if necessary. Go to one from Thyroid UKs list.

Mum69 profile image
Mum69 in reply to JAmanda

Thank you

BrynGlas profile image
BrynGlas in reply to JAmanda

I agree, I get my T3 at a very reasonable price and it is here inside 5 days of paying for it, via email. Even my bank has stopped raising their eyebrows at me buying my own Thyroid hormones online! Things are getting better in that respect.

PM me, if I can advise.

I definitely think you need an increase in levo your t3 is below range and tsh needs to be less x

Mum69 profile image
Mum69 in reply to Zannadoo

Thank you waiting on a telephone consultation today. Let’s hope my doctor agrees.

Hi. I had my consultation this morning and my GP is starting me on B12 and folate and to be tested for pernicious anaemia next week. It’s somewhat of a relief and he has also agreed to an increase of Levo reluctantly. He doesn’t want me to end up hyper!!! I said I would like to try an extra 25mcg and will monitor it closely. He doesn’t put much emphasis on the TSH but goes with the T4!!! This is obviously contradictory to any advice I’ve had on here but either way I feel a bit better that I’m being proactive about my health and am so appreciative of the advice and confidence this group is giving me to do this so thank you all once again and hope that I will feel better in time.

BrynGlas profile image
BrynGlas in reply to Mum69

Yes, it is appalling that we have to treat ourselves!!

Don’t start the B12 or folate until you’ve had your test for PA as the results will be skewed.

Mum69 profile image
Mum69 in reply to Gingernut44

Thank you

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