Tsh of 79

[Tomcat6]

I’m currently on 100 mcg of levothyroxine and latest bloods are showing an increase in my levels. What could be the reason for this?

[SeasideSusie Remembering]

Tomcat6

Assay interference?

Is TSH all that is tested? What about FT4 and FT3?

Do you have autoimmune thyroid disease (raised thyroid antibodies)?

Do you take Biotin or a B Complex or any supplement that contains biotin? If so did you leave it off for 7 days before the test?

Did you drink coffee or caffeine containing drink before the test?

How long since diagnosis?

TSH on diagnosis?

Was Levo gradually raised since diagnosis?

What have been previous results with what dose of Levo?

[Tomcat6 in reply to SeasideSusie]

Thanks for your reply- I was diagnosed prob 5 years ago with a Tsh of 200 odd. The doctor at the time said that she had personally never seen such high numbers. Since then , after many months of dose increase, my numbers dropped(100 mcg dose) and life was good. Follow up bloods have not been done since then until now. GP is very slow at recalls for routine bloods. Very little information is also given on results. I know that T3 is not tested and when I asked what my recent results were I was only told the Tsh result. I’m not very knowledgable about my condition tbh, hence the reason I joined. Hopefully I can expand my knowing of what’s going on.

[SeasideSusie Remembering in reply to Tomcat6]

Tomcat6

I was diagnosed prob 5 years ago with a Tsh of 200 odd. The doctor at the time said that she had personally never seen such high numbers. Since then , after many months of dose increase, my numbers dropped(100 mcg dose) and life was good. Follow up bloods have not been done since then until now. GP is very slow at recalls for routine bloods.

Then your GP is being very negligent. Guidelines are very specific in that once stable levels are reached retesting should be done annually. If your surgery is not recalling you for an annual blood test then you ring them and ask for one.

Very little information is also given on results. I know that T3 is not tested and when I asked what my recent results were I was only told the Tsh result.

That's fairly typical. If results come back within range then you don't get any communication from the surgery. If your results come back out of range you may get a phone call to adjust your dose or to discuss with the GP.

Advice here is to ALWAYS get a print out of your results after every blood test. Give it a few days after the test, ring the surgery and ask the receptionist to print you a copy of your results, don't accept verbal or hand written results, ask for a print out. In the UK we are legally entitled to a copy of our results without charge or question. If you are asked why you want them, if you feel you must answer then just say "for my own records".

It's possible that TSH might be the only test done in your area, some do TSH and FT4 as standard, with the hospital lab that does my test FT3 is added when TSH is suppressed.

I’m not very knowledgable about my condition tbh, hence the reason I joined. Hopefully I can expand my knowing of what’s going on.

A good place to start is ThyroidUK's main website (this is their forum):

thyroiduk.org/if-you-are-hy...

Have a good look round and come back and ask any questions. We have many experienced patients who are willing to help.

For a full picture of thyroid status we need

TSH

FT4

FT3

To know if our hypothyroidism is autoimmune (the most common cause) then we also need

TPO and Tg antibodies

Because we Hypos often have low nutrient levels or deficiencies, and because optimal levels are necessary for thyroid hormone to work well, we also need

Vit D

B12

Folate

Ferritin

You can ask your GP for all these tests but you wont get them all done. We do have recommended private labs and it may well be worth you investing in a full thyroid/vitamin test to get the current full picture.

Comparable full Thyroid and Vitamin test bundles as follows:

Medichecks ADVANCED THYROID FUNCTION medichecks.com/products/adv...

Check this page for details of any discounts: thyroiduk.org/getting-a-dia...

or

Blue Horizon Thyroid PREMIUM GOLD bluehorizonbloodtests.co.uk...

Check this page for discount code thyroiduk.org/getting-a-dia...

Both tests can be done by fingerprick or for extra cost you can arrange venous blood draw. Some members find fingerprick tests easy, some don't.

To ensure accurate results, always advised here, when having thyroid tests:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

If you wish to do a private test and decide on the fingerprick version, I have some tips which may help, please ask if you would like me to post them for you.

**

What is your GP actually doing about your TSH of 79?

[Tomcat6 in reply to SeasideSusie]

So much information that I was not aware of, so thank you so much. My bloods were taken over a fortnight ago now , and yesterday was when I got a call from my practice receptionist . When I asked her what the next step would now be she said that the GP would prob get back to her sometime next week to tell her if they are going to increase my dose , or to make an appointment to see me. - not the best!

[SeasideSusie Remembering in reply to Tomcat6]

I don't understand the delay. A GP must have had to look at your results for the receptionist to be told to contact you, pretty obvious you need an increase in your dose so why on earth wasn't a new prescription made ready for you there and then. Honestly, what we hear on the forum gets worse every day 🙄

If that was me I'd be ringing up every day and asking "Has the doctor increase my Levo dose yet, when can I pick up my prescription?" Make a nuisance of yourself, remember it's the squeaky wheel that gets the oil 😉

Also, when we have a change of dose we need to be retested 6-8 weeks later to check our levels.

[Tomcat6 in reply to SeasideSusie]

I am definitely going to get on it fist thing Monday morning. I’m also going to order a private blood test. My only concern would be that my GP will probably not entertain my private blood test.

[SeasideSusie Remembering in reply to Tomcat6]

Tomcat6

My only concern would be that my GP will probably not entertain my private blood test.

Some do, some don't. But if the private test shows problems and the GP wont accept them, use it as an invitation that they do their own tests.

[SlowDragon Administrator in reply to Tomcat6]

GP should increase dose by 25mcg to 125mcg

Bloods should be retested 6-8 weeks after each dose increase

Likely to need further increases over coming months

Approx how much do you weigh in kilo

Guidelines on dose Levothyroxine by weight is approx 1.6mcg per kilo of your weight

ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12

Have you had thyroid antibodies tested?

About 90% of primary hypothyroidism is autoimmune thyroid disease also called hashimoto’s, diagnosed by high thyroid antibodies

Low vitamin levels are extremely common with hashimoto’s

Do you always get same brand Levothyroxine at each prescription

Many people find different brands are not interchangeable

[Tomcat6 in reply to SlowDragon]

Hi there, thanks for your information . I prob weight 68 kg at the moment and am 5 ft 4 inches . I definitely have had a weight increase over the last month or two, although my appetite is not really there. As far as Levo brands go - I regularly receive different ones. The only brand I won’t take is teva which causes me terrible headaches and joint pain.

[SlowDragon Administrator in reply to Tomcat6]

So guidelines on dose by weight suggests you are on approx correct dose

68 x 1.6 = 108

But very high TSH suggests poor absorption/gluten or dairy intolerance and/or low vitamin levels

Next step is to get full thyroid and vitamin testing

Which brand Levothyroxine suits you best

Do you always take Levothyroxine on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours

Some like HRT, iron, magnesium, PPI, vitamin D or calcium not within 4 hours

[Tomcat6 in reply to SlowDragon]

I have ordered a private thyroid test, so I’ll be very interested as to what the results will be. I’ll definitely have to post on here though when I get the results as I’m not the best at understanding what’s what. When I was diagnosed the GP sat me down and said that I had an under active thyroid. We will start you on 25 mcg of levothyroxine and come back for repeat bloods in 8 weeks. The dose was increased each time until my Tsh was 0. Something and that was that. No information other than that was given. I always take on an empty stomach etc.

[Tomcat6 in reply to SlowDragon]

As far as brand goes- I have no standout brand that makes me feel any better or worse , apart from teva obviously that really doesn’t agree

[SlowDragon Administrator]

A rare cause of high TSH

Suggest you read and perhaps give copy to GP

ncbi.nlm.nih.gov/pmc/articl...

[helvella Administrator Thyroid UK in reply to SlowDragon]

Not just HAMA, but also antibodies to TSH (though that result would seem exceptionally high for this issue).

[Tomcat6 in reply to SlowDragon]

I have got no clue what this means unfortunately . Can you explain what this is in layman terms. I’m so sorry.

[SlowDragon Administrator in reply to Tomcat6]

It basically means high TSH can be misleading

See what full thyroid and vitamin levels show

If ONLY TSH is high and Ft4 and FT3 are good this would suggest TSH result is incorrect

Would need referral to specialist thyroid endocrinologist (addenbrooks in Cambridge possibly)

helvella might know more

[helvella Administrator Thyroid UK in reply to SlowDragon]

A common approach to inconsistent or odd test results is to re-run the tests using different technical approaches.

If the speedometer in your car shows a silly high speed, check with your satnav. Or a stopwatch and mileposts. If your speedometer shows 130 mph but your satnav shows 25mph, and you feel that you are going slowly enough for a residential road, you have idenitfied which of the two is definitely wrong.

Typically that would involve sending a sample to another lab that already uses a test from a different manufacturer, which uses a different basis. It doesn't actually need any great skill or knowledge but many doctors would refer to the lab and get the lab to agree.

If HAMA or TSH antibodies (or anything else) make a test produce wrong results, that is called "interference".

[Tomcat6 in reply to helvella]

Thanks for that- hopefully as I said the private test will show more. Until then I’ll just plod on and not think too much about it. I’m definitely going to educate myself more now though, as it seems this condition is not as straightforward as I was led to believe . Thank you all so much for your help. I will keep you posted.