TSH has dropped below range

[Auntbessy]

Hi I recently had my tsh tested by my GP. It is 0.17 and the range is 0.27 to 4.2. Previously in March my tsh was around 2 (can't find the actual result). My GP wants to lower my dose but I'm worried that this would not be a good thing and it took a bit of fighting to get the 175mg I'm prescribed. Until this point my tsh had been stable around 0-1 but still in range. I have some symptoms which the GP is now attributing to my dosage. I have had these symptoms for quite a while and suspect they are due to entering the perimenopause. Due to meet the GP soon and I want to make sure I know what's best to do as I don't trust most GPs to have the best advice around thyroid stuff.

[greygoose]

GPs are terrified of low TSH because they just don't understand what it is or what it does. They are only happy when everything is in-range. TSH isn't even a thyroid hormone, it's a pituitary hormone. It's the message the pituitary sends to the thyroid to stimulate it to make more hormone. If you are taking adequate exogenous hormone (because you are hypo) the pituitary will sense that and stop making TSH. That's how it's supposed to work.

So, a low TSH does not automatically mean that your dose is too high. To know that, he'd have to test your FT4 and your FT3. If he won't do that, tell him to take a running jump! No, don't say that, but tell him you feel good and you are going to stay on your present dose. He is there to advise you, not to dictate to you. Insist that you want your FT4/3 tested before you will agree to any change.

[jgelliss in reply to greygoose]

Ditto.👏👏👏👏

[SlowDragon Administrator]

Just testing TSH is completely inadequate

Refuse to reduce dose without FULL thyroid and vitamin testing

TSH, Ft4 and ft3

Test early morning, fasting and last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

When were vitamin D, folate, B12 and ferritin last tested

as you have Hashimoto’s are you on gluten free/dairy free diet

[Auntbessy in reply to SlowDragon]

It seems almost impossible to get an early morning appointment for bloods these days. Yes I am always on the same brand and have been for several years.

I think I will get a full panel done through the links you sent me.

[SlowDragon Administrator]

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

[Auntbessy]

Thank you for the advice. I really appreciate your knowledge around all of this. I will definitely follow your suggestions.

[SlowDragon Administrator]

if GP won’t test full thyroid

Cheapest TSH, Ft4 and Ft3 test is Monitor My Health

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

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

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/getting-a-dia...

[SmallBlueThing]

If you're like me, COVID-19 has further affected your thyroid. Two and a half years on, and mine hasn't calmed down, but more regular testing is available again, and I've agreed to cut my dose. I experienced increased fatigue for the first few days, but now feel pretty much as before. If my TSH is below 1 for the next test, fT4 should be added automatically, but I'll ask for fT3 to be added, which they've done before. Best wishes for making the right decision, whenever it's reached.

[fiftyone]

I am on 175mcg daily of levo. Have been for many years. My TSH is something like 0.005, my T4 is several points above the range BUT my T3 is highish but within normal range. This situation has suited me for years. GPs panick when they see my results. I have told them in no uncertain terms that this is normal FOR ME. I don't have osteoporosis or any other side effects that I know about. I don't see how a GP can make decisions without all three measures and without taking into account how you feel. They should also be able to say how well you convert T4 to T3. Just looking at TSH does not give this information. Ask your GP how well you convert T4 to T3...that might put him/her in sticky situation.

[fiftyone in reply to fiftyone]

but beware of taking too much. When I first suffered, years ago, I was prescribed 250 mcg daily and I became psychotic. I imagined someone was trying to abduct my young daughter. Eventually a doctor told me to stop taking the levo, and gradually my thought processes returned to normal and I ended up on 175mcg.

[Auntbessy in reply to fiftyone]

Gosh that sounds pretty scary. I don't think I have hyper symptoms. I just think my GP worries that my headaches, lack of sex drive and poor sleep might be connected but these have been an issue for a while now and when my tsh was around 2 also. I have many hypo symptoms such as weight issues, numb hands, fatigue, brain fog so I'm hardly hyper!

[fiftyone in reply to Auntbessy]

I am not a doctor, but I wonder if your GP has considered anything else, eg hormone levels/vitamin-mineral levels which couold be causing your problems or is he/she fixated on the levo dose. Just a thought.

[T3sortedme]

How long did you leave between your last dose and having you blood drawn for test? I had a heart issue and was taken into hospital and they did a blood test. It was mid morning after I took my tablets at 7.30am that morning so of course the TSH was very low (0.1) as my body was still absorbing it. My GP was concerned so I agreed to do another test a couple of days later and stopped my medication at tea time the day before. TSH was on target (0.77) and he was happy again.

[Auntbessy in reply to T3sortedme]

I skipped the dose before my test 🙂

[Wwwdot in reply to T3sortedme]

Hi T3sortedme

Great post Auntbessy, I have learned a lot from you guys!

Wonderful to read about knowledgeable patients guiding GPs! My hubby just tested for autoimmune thyroid disease TPOAb was positive but TSH in range.

I want GP to test his T3 and T4 but getting resistance. Am I mistaken to want these tested? I don’t see how the disease can be monitored if only TSH is measured - to me that’s like saying ignition is on so car must be working!

How do we know that you are not getting osteoporosis? Does that only become a risk when taking a treatment drug?

He has put on a lot of weight which is baffling as we live quite remote so I know what he eats and he is active all day. He’s also very red in the face or “ruddy” does that suggest anything?

Thank you in advance for sharing all your invaluable knowledge and experience (especially auntbessy) as it helps newbies too to learn from people who plan and research before GP consultations!

🤗🤗🤗🤗🤗

[Auntbessy in reply to Wwwdot]

When I was first diagnosed, my tsh was in range but my antibodies were sky high. I was ok the floor physically and mentally. My NHS GP at the time was great and tested my antibodies, T3, T4 and tsh without me having to beg. My current GP refuses to test anything but tsh now so I will in this situation described above, pay for everything to be tested. Good luck with getting the right help for your husband.

[Wwwdot in reply to Auntbessy]

Thank you Auntbessy

I will continue and get his T3 and T4 tested by hook or by crook!

Hope you continue to improve too.

🤗🤗🤗

[SlowDragon Administrator in reply to Wwwdot]

He needs vitamin D, folate, ferritin and B12 too along with retest TSH, Ft4 and Ft3 together

Book early morning test 9am latest and only drink water between waking and test

As he has high thyroid antibodies, he needs coeliac blood test too

[Wwwdot in reply to SlowDragon]

Hi Slowdragon

Thank you. His ferritin was above range about 400 ish. He is on B12 and Folic acid. I will push for a retest as you suggest as it seems everything being done in bits and pieces snd no cohesive approach.

Interesting about celiac as I have taken him off bread and pasta and replaced with gluten free and he has less acid reflux and feels better.

Interesting!

Thank you.

🤗🤗🤗

[Wwwdot in reply to SlowDragon]

Slowdragon

How and why does high thyroid antibodies link to coeliac?

TIA

🤗🤗🤗

[SlowDragon Administrator in reply to Wwwdot]

Replied on your own post.

[Wwwdot in reply to SlowDragon]

Thank you. Soooooo appreciated.

🤗🤗🤗

[Kowbie]

Hello I just wanted to say what a lovely name , and I agree with you not trusting the drs