TSH Level

[Ganigoo]

Over the last 6 months my gp has been lowering my thyroxine. He doesn't tell me what my levels are just that they're all over the place! Since Christmas I have been on 100g thyroxine previously on 150g. I am having an unrelated procedure in hospital this week and last Monday got a cc letter saying my TSH level is 7.19 and need the gp to change my prescription. Its easier to get an audience with the Pope! I have managed to get phone apt next week. Is 7.19 particularly high or low? I don't understand what these levels mean as I have never been told before. Hope someone knows what it means.

[Forestgarden]

Hi there, do you know what the normal range was for your tsh? I'm assuming it is over range. Tsh stands for thyroid stimulating hormone, so a high value means your pituitary gland is producing lots of tsh in order to stimulate more thyroid hormone production because you don't have enough. Its a negative feedback mechanism, so high TSH means low thyroid hormones, while low TSH means high levels of thyroid hormones. Have you been on levothyroxine for a long time? Do you have a diagnosis such as hashimotos?

[Ganigoo in reply to Forestgarden]

I've had an underactive thyroid for 25 years. Started on 25mg and over the years been steadily increased to 200mg which is what I was on prior to gp reducing it to 100mg in December. All he told me was my results were contradictory some levels saying it was overactive and others showing overactive.

[Ganigoo in reply to Ganigoo]

Sorry should be others showing underactive

[Forestgarden in reply to Ganigoo]

Have you ever been referred to an endocrine consultant? Do you take your levothyroxine on an empty stomach, with just water, and nothing else for at least half an hour (preferably an hour). Caffeine and food can reduce the amount of levo your body absorbs.

[Forestgarden in reply to Forestgarden]

I agree with Anthea55 your gp doesn't know what he's doing. To drop from 200 to 100mcg is far too much. Was it a gradual reduction or all in one go?

[Ganigoo in reply to Forestgarden]

I was on 175 for a month then 100mg

[Forestgarden in reply to Ganigoo]

That's a huge drop in one go. Get another gp! Have you had side effects from the drop?

[bluepettals7 in reply to Forestgarden]

endocrine consultants dont know what they are doing so gp's dont, they are general practitioners!!!! its ludicrous for gps to meddle... bloody annoys me! ganigoos results to me read really under active.

[Anthea55]

Since your GP doesn't know what he's talking about you need to learn about it yourself.

Go to the Thyroid UK website. thyroiduk.org/

Then select 'If you are undiagnosed' and press 'Read More'. This should give you somewhere to start. Then as you seem to have an underactive thyroid you can look at the section 'If you are Hypothyroid'.

Blood tests - you are entitled to have these. You should be able to ask at reception for a printout. Most surgeries should also allow you look up your results online. See if reception can tell you how to do this.

Please come back here with any questions and we will do our best to help.

By the way - is there another doctor you can see? This one is making you ill.

[Stills in reply to Anthea55]

Useful post for me as also undiagnosed so now reading up thanks

[HealthStarDust]

Anyone on levothyroxine should have a TSH below 0.5-2.

[Ganigoo]

Thank you guys I will wait until I've had my phone and ask him what my levels are. I do take it on an empty stomach last thing at night with juice, does that make a difference?

[Forestgarden in reply to Ganigoo]

It might. Make sure its on an empty stomach with just water. Yes, try to get a printout of your results. And see if you can get blood tests for vitamins, iron etc, full works!

[Anthea55 in reply to Ganigoo]

You'd be better asking reception for your blood results. Ask for the results and the ranges. They can print out for you. Over the phone you may not hear it clearly and he probably won't tell you the ranges either.

[Ganigoo in reply to Anthea55]

Thanks I'll try that

[bluepettals7 in reply to Anthea55]

agree

[SlowDragon Administrator in reply to Ganigoo]

Only ever take levothyroxine with water

Which brand of levothyroxine are you taking

Do you always get same brand at each prescription

As normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

NEVER ever agree to more than 25mcg dose reduction per day

And never agree to dose reduction at all without getting FULL thyroid and vitamin testing

Dose based on TSH is completely useless

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

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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

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

When were vitamins last tested

Exactly what vitamin supplements are you taking

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)

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 that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before 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...

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

you should have had full thyroid and vitamin testing BEFORE any dose reduction

If you were over medicated, dose should have been reduced to 175mcg and retested 8-10 weeks later ……or possibly to 187.5mcg daily

Was ridiculously heavy handed to halve your dose from 200mcg to 100mcg

[Ganigoo in reply to SlowDragon]

Seems I have a lot to learn. My thyroxine is different every time now, was on accord at last chemist but it closed down.

[SlowDragon Administrator]

Approximately how much do you weigh in kilo

Guidelines of dose Levo by weight

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.

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

[Ganigoo in reply to SlowDragon]

I don't know my exact weight atm but do know I've put a lot on since Christmas despite no change in routine. I estimate at least a stone possibly 2. My Jean don't go over my thighs anymore and I'm living in leggings and other stretchy clothes!

[SlowDragon Administrator in reply to Ganigoo]

Weight gain ……As direct result of inappropriate or far too large a dose reduction in levothyroxine

Get 25mcg increase in levothyroxine up to 125mcg

Retest in 6-8 weeks…..making sure you test with correct timings

Likely to need further 25mcg increase in dose after that

Meanwhile get vitamin levels tested.

Very likely low vitamin levels as direct result of being hypothyroid now

Frequently necessary to supplement vitamin D, separate magnesium (in afternoon at least 4 hours before levothyroxine) plus daily vitamin B complex

But ALWAYS test vitamin levels first and retest annually

[Espeegee in reply to Ganigoo]

Welcome to my world lol, leggings all the way just about.

[mrskiki in reply to Ganigoo]

Been living in stretchy yoga pants since my thyroid went a bit haywire, still hoping that will change once I get my vitamins and medication to right level! Or at least that they won’t have to stretch as much. It does arrive really quickly and catches you out, especially when you aren’t used to worrying about weight x

[bluepettals7 in reply to SlowDragon]

just brilliant slow dragon

[elwins]

I have the NHS app on my iPad and all my results are on it from my GPs, tests results appointments plus medications, as other people say you are legally allowed copies of all blood tests. I just ring up and they will leave a copy at reception for me to pick up.

[SlowDragon Administrator]

See from another reply you were initially reduced to 175mcg

Get copies of test results from test done after 6-8 weeks on 175mcg

Do you remember if you were taking 100mcg tablet and a single 75mcg tablet

The only brand that makes 75mcg tablet is Teva

Teva brand upsets many many people

if you were still on too high a dose (unlikely) dose should have been reduced to 150mcg or even 162.5mcg daily …..not down to 100mcg

I am having an unrelated procedure in hospital this week and last Monday got a cc letter saying my TSH level is 7.19

If you are scheduled for general anaesthetic this may well not happen with TSH over 5

[Lindam1077]

Hi I totally agree with your comments I’m hypo Hashimoto when I was diagnosed it was like by the way you have hypo no explanation as to what would happen to my body the impact I’ve been experiencing all the side affects and Levo does not work at all. This is caused by inflammation which is ignored by GPs so I’m taking the holistic approach

Basically our immune system is attacking the thyroid so that has to be dealt with. So Castor Oil Apple Cider Vinegar Gummies Hawthorn Seeds and Celtic Salt

Check out the benefits of the above Good Luck x

[PixieElv]

Hi Ganigoo

I am sure you know this, but you are legally entitled to see your results. he cannot keep them from you. If not, you can complain to the practice manager and/or change GP surgery.

People here can help you interpret.

I hope all will go well for you.

[Brightness14]

The doctor Anaesthetist at the hospital would have picked this high TSH as a warning. If the FT3 is very low they would have to wait for your levels to stabilise. It's their job to look after you which they are doing, depends on the operation if they don't have to put you under it's OK.

[arTistapple in reply to Brightness14]

Yup the anaesthetist knows more about thyroid issues than the GP and in my experience, more than the endocrinologist or the cardiologist!

[Brightness14 in reply to arTistapple]

Exactly, it's part of their all important remit to keep you alive.

[reneeh63]

Also, rechecking levels in just a month and then making another change is too soon. I had a doctor who did that, making 3 reductions in 3 months - a few months later my levels were still "catching up" and he had greatly overshot what he thought the target was.

Dosage changes should be small and checked 6-8 weeks after the change to give enough time to ACCURATELY capture the impact. Your doctor needs to SLOW DOWN.

[SlowDragon Administrator]

Dosage changes should be small and checked 6-8 weeks after the change to give enough time to ACCURATELY capture the impact.

When dose is reduced…..waiting 10-12 weeks before testing is more realistic

[Ganigoo]

Hi guys sorry for a delay in update but dealing with our doctors is like pushing water uphill. After my bloodtest showing TSH level 7.19 my dose was increased to 125mg. An unrelated test 2 weeks later which also checked TSH level showed a reduction to 5.88. The GP said to keep the same dose as it might not have had a chance to kick in fully yet. Had to wait until May for retest and got results today showing TSH level is now 1.06 and to remain on 125mg. I'd like to say I feel much better but unfortunately I still feel extremely tired but unable to sleep at night. Growing old isn't for the feint hearted!