High TSH - and GP not advising treatment, any a... - Thyroid UK

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High TSH - and GP not advising treatment, any advice?

Rcycle profile image
25 Replies

I've been advised I have abnormal (higher than it should be) TSH following 2 blood tests done over the last 12 weeks . The comment from the GP so far is to do nothing apart from wait 1 year and have another blood test.

I've requested an appointment with the GP to discuss this as I'm not happy with a "do nothing" approach and at the very least, would like advice on any related issues such as diet (does iodine make a difference ?) or to understand which if any of some ongoing health issues may be related to what is being described as "subclinical hypothyroidism".

Does anyone have any advice on what has worked well for you ?

Nov 23: TSH level 7.02, T4 level 9.3.

Feb 24: TSH level 7.85, T4 level 10.3

TSH "normal" range stated to be 0.34 to 5.6 mu/L

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Rcycle
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25 Replies
FallingInReverse profile image
FallingInReverse

How do you feel? Symptoms?

Your TSH is so very high there’s no doubt your other numbers are off. And I’m guessing too you have symptoms.

Have you had any antibody tests (TPOab or TGab?) or Free T4 and Free T3 numbers?

We need the range for the T4, and pls confirm if it’s total T4 or Free T4.

Let us know.

EDIT: here is a very helpful visual/overview of TSH levels that Slowdragon has shared: web.archive.org/web/2004060...

Buddy195 profile image
Buddy195Administrator

Welcome to the forum Rcycle,

We are a friendly and supportive forum and are here to help! 🦋

So we can offer better advice, we really need to see blood test results (with ranges in brackets) for FT3 and FT4in addition to TSH.

TSH should always be under 2, with most members reporting they feel best with TSH significantly under 1.

Can you share any current symptoms with us?

We also like to see antibody and key vitamin tests (ferritin, folate, vitamins D and B12). The antibodies will show if your thyroid is struggling due to an auto immune condition (Hashimotos). Having optimal key vitamins also supports thyroid health.

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...

As you have had 2 elevated TSH results, I personally would ask GP in first instance to test FT3, FT4, antibodies and key thyroid vitamins, then push for a trial of Levothyroxine.

Iodine is not recommended. We also recommend testing vitamins prior to starting any supplements.

I’m unsure if the time of your blood draw, but (a person to person tip) is to have the test before 9am when TSH is highest.

HealthStarDust profile image
HealthStarDust

Just so you know, I believe once you have 2 TSH over range but under 10 then you can trial levothyroxine treatment for 6 months according to guidelines. See Treating subclinical hypothyroidism nice.org.uk/guidance/ng145/...

Rcycle profile image
Rcycle

Thanks very much all for replies,

Both blood tests were taken ~ 9 a.m. or so.

No antibody tests done so far.

FT3 range - this wasn't tested by GP.

FT4 : Range described as 7.7 to 15.10. Nov 23 reading was 9.3, and Feb 24 reading was 10.3

Ferritin: 79 (described as Normal, Nov 23 - range was 11 - 307)

Vit B12: 175 (described as Normal, Nov 23)

Folate: 4.2 (described as Normal, Nov 23 - range was 3.8 - 25)

Vit D - not had this tested as yet.

I am considering whether to use a private doctor if my GP is unsupportive, thanks also for hte link to ranges.

Symptoms - Some where I'm not sure if it does or doesn't connect to potential hypothyroidism. Including: fatigue / exhaustion; overweight; high cholesterol; repeated infections; high blood pressure; migraines; skin problems.

SlowDragon profile image
SlowDragonAdministrator in reply toRcycle

Vit B12: 175 (described as Normal, Nov 23)

Folate: 4.2 (described as Normal, Nov 23 - range was 3.8 - 25)

What’s range on B12 - usually 180-600 approx

Folate obviously very low

B12 probably extremely low

Get thyroid antibodies and vitamin D tested

Ideally via GP

If not test privately

Can test vitamin D via NHS private testing service

vitamindtest.org.uk

Or retest all

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

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)

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Two thyroid tests with TSH over 5 and symptoms

You should be offered trial on levothyroxine

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

Artemisraluca profile image
Artemisraluca in reply toSlowDragon

Hello! Can I ask if testing thyroid hormones before 9am is still ideal for someone who never sleeps during the night/does night shifts and always wakes up after 5 pm? Bit of a weird thing, I know. I am very depressed and avoidant. Does the body adapt or TSH is still highest at 9am?

SlowDragon profile image
SlowDragonAdministrator in reply toArtemisraluca

You still ideally need to test in the morning

Improvement after 5pm suggests Adrenal/cortisol issues, very common when hypothyroid

Artemisraluca profile image
Artemisraluca in reply toSlowDragon

Thank you, I am going to test it now, almost 9am here. No sleep, but if anything, it should raise this Tsh into something my drs would treat. I will test T4, too. The others when i get a discounted refferal.

Artemisraluca profile image
Artemisraluca in reply toSlowDragon

Would eating 4 hours before ruin the tests?

SlowDragon profile image
SlowDragonAdministrator in reply toArtemisraluca

Probably not

Artemisraluca profile image
Artemisraluca in reply toSlowDragon

Thank you! 😀

Artemisraluca profile image
Artemisraluca in reply toSlowDragon

My Tsh is 5.6. 🥺 Ft4 and anti-Tpo are fine…I wonder/worry if my anti-tiroglibulin is also ok, as it was before, what could cause the high tsh?

Jaydee1507 profile image
Jaydee1507Administrator in reply toArtemisraluca

Do start your own post if you want specific advice.

Artemisraluca profile image
Artemisraluca in reply toJaydee1507

Ok, I will.

Jazzw profile image
Jazzw

Symptoms - Some where I'm not sure if it does or doesn't connect to potential hypothyroidism. Including: fatigue / exhaustion; overweight; high cholesterol; repeated infections; high blood pressure; migraines; skin problems.

All of those can be hypothyroid symptoms.

suedasher profile image
suedasher

Hi Rcycle. I had a similar situation whereby I had high TSH for several years and didn't do anything about it. It ended up being a bit of a disaster as I ended up with neurological pain, particularly in my shouders and hands. Apparently long term untreated hypothyroidism can cause neurological damage. Dont wait.

Rcycle profile image
Rcycle

Thanks everyone for taking the time - so useful especially as all this is new to me. I'm pending a reply from my GP as I've asked for an appointment to discuss the what next, your comments are very helpful with giving me suggestions about what to raise.

ThyroidieGriaffe profile image
ThyroidieGriaffe

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

Hello welcome to the group. This is NICE guidance. Firstly strongly recommend that you get b12, folate levels up and there is some very helpful guidance above. You also need to check d. The reason for this is these vitamins are part of the endocrine system and all tend to be low in hypothyroid people. These can take a little time to get up and help you feel better.

NICE sets out what you should expect. The GP should check antibodies. That will tell you if you are autoimmune. The treatment is the same but it allows you to help manage the condition if you are. Also worth using is the section that says if your TSH is out of range (note it does not say 10) and you are symptomatic the GP can try your on a trial of levothyroxine. There is also guidance on start dose. The main thing as others have said is how you are feeling. There is a very helpful list of hypothyroid symptoms on Thyroid UK site. I suggest using it and ticking the ones you are struggling with and using with the GP.

Good luck.

Cornwaller profile image
Cornwaller

Your symptoms and bloods are consistent with having:

Hypothyroidism

B12 deficiency - possibly caused by Pernicious Anaemia (assuming your blood result is for total b12)

Your GP should be considering a trial of levothyroxine.

I would not suggest b12 supplements as these might make convincing your GP to diagnose b12 deficiency or Pernicious Anaemia very difficult. I would ask for testing ASAP. Doctors are reluctant to diagnose b12 deficiency which is strange because it is very serious and can be successfully treated.

If you look at the Pernicious anemia site here an health unlocked you'll find lovely people talking about diagnosis, symptoms and treatments. You might notice that some of these people are the same ones as you find here on the thyroid site. Hypothyroidism and b12 deficiency commonly develop together and strangely have quite similar and diverse symptoms.

The B12d.org site has details of b12 deficiency symptoms and much more. The NICE protocols for both b12 and Hypothyroidism are also worth reading by which time you'll know more than your doctor.

Best wishes

Rcycle profile image
Rcycle

Thanks everyone.

GP clearly doesn't seem to think this is urgent as they've offered me a phone appointment but not until March 12th. However I appreciate they are probably swamped.

In the meantime I will do some reading up on all the links you have sent me, plus I'm considering paying for a private test for vitamins / minerals (as I suspect it's unlikely I'd get those tested via NHS).

McPammy profile image
McPammy in reply toRcycle

You could try using Patches if you have it at your gp surgery. That way a Dr triages your request and you could have an appointment within a day.

McPammy profile image
McPammy

Your TSH is far too high. Anything above 2.5 you’ll get symptoms my private endocrinologist told me. My GP also wouldn’t do anything when my TSH was high. I was left for 5 years struggling. I had asked many times for a thyroid test and they refused just saying I had depression. I knew I didn’t. Finally they did do a test and my TSH was 36 (range 0.35-5.5). I was in a mess. So, my answer is do not allow them to fob you off. You could do with replacement treatment of T4 to start with. Then you’ll have to see how that helps as the months go on. You may need another medication T3. It’s very important to check TSH, T4 and T3. You can get all these checked and your antibodies through a private on line Monitor My Health. Really your gp should be checking all these bloods. But go private to get your health back as things will only get worse. I went to see a private only endocrinologist who is brilliant and not that expensive also. If you need his details just private messsge me as we can’t mention Drs names in this forum.

Lovecake profile image
Lovecake

It’s cruel how they make us wait for treatment. My TSH was 5 for over 2 years (before I got patient access) and I knew nothing back then. It wasn’t until my TSH was 10 that they decided to help.

I was almost crawling around then (obviously not literally as it hurts and ruins your clothes).

Go on the Thyroid UK website and print out the symptoms list. Tick all yours to show/tell your GP..

My migraines are always dreadful when my thyroid levels drop. No meds work. Had years of pain and needing to be home/in bed. Was probably avoidable had I been on thyroid medication.

You could always “ring on the day” and get an appointment with a GP if you feel 12th is too long to wait. Just say to the receptionist (who may come across as a specialist) that you are getting worse by the day and need to discuss it with a doctor now.

Read lots, write things down (helps with remembering and for reference)and be aware that it will take months of slowly chipping away for you to get better. But you will feel better 😊

Otto11 profile image
Otto11

Hi you will get plenty of good advice here. This forum have been helping me so much the last few years but it’s a lot to take in at first. My GP had left me under medicated for 13 years telling me I was depressed. I screamed at him once & he has refused to see me since. I only got treatment after being admitted to hospital for something else & took my blood results with me. I hope your GP listens to you & you get the treatment you need. Let us know how you get on.

humanbean profile image
humanbean

Vit B12: 175 (described as Normal, Nov 23)

Folate: 4.2 (described as Normal, Nov 23 - range was 3.8 - 25)

I would definitely want my B12 and folate to be much higher than yours and I'm sure you would feel better for it. It would also be necessary to find a maintenance dose to keep your levels optimal once you got them where you want them. In people with thyroid disease low nutrients are extremely common, and optimising their results won't necessarily keep them optimal without maintenance doses.

There are two different tests for vitamin B12, and I'm sure you won't be surprised when I say the NHS in the UK usually sticks to the older test (it's cheaper).

The first is the "classical" test usually referred to as the Serum Vitamin B12 test or the Total Serum B12 test which normally has an upper limit to the reference range of about 600 or more.

The better, more modern test is the Active B12 test which normally has an upper limit to the reference range of about 200(ish).

For more info :

synnovis.co.uk/our-tests/ac...

.

To raise B12 levels the best supplement for most people are methylcobalamin - easily sourced on the internet on sites that sell supplements. For info on the different kinds of B12 supplement see this link :

perniciousanemia.org/b12/fo...

.

Optimal levels for Serum Vitamin B12 are described here :

perniciousanemia.org/b12/le...

perniciousanemia.org/b12/le...

.

Optimal levels for Active B12 are usually given as :

Minimum acceptable level is 70 pmol/L.

Minimum optimal level is 100 pmol/L.

Note that B12 is not poisonous and high levels are not dangerous.

stichtingb12tekort.nl/engli...

.

For the body to make use of vitamin B12 it is essential to have good levels of folate too. The upper limit to the folate test varies a lot, and some reference ranges don't even have an upper limit. I try and keep my own folate to a level of 15 - 20 micrograms per litre, but find it hard to maintain my level where I want it. I think this is common.

.

The best supplement for raising folate (for many people) is methylfolate which can easily be sourced on websites selling supplements. See these links :

takecareof.com/articles/ben...

chriskresser.com/folate-vs-...

If you react badly to methylfolate supplements, start with tiny doses and build up :

dramyneuzil.com/methylfolat...

mthfr.net/methylfolate-side...

We suggest on this forum that people try and get their folate levels up to the upper half of the reference range if there is an upper level to the range. If there isn't an upper level then, as I said earlier, I try to get mine to 15 - 20 micrograms per litre.

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