Confused 🤔

[Henson1980]

Evening all! I posted on here over a week ago regarding taking a private blood test to check my thyroid levels. I had wrongly stopped taking my levo a few days before I was going to take the test until you guys told me it only needed to be 24hrs. So I went back onto my normal dowse of 100mcg for a week then stopped 24hrs before I took the test. These are my results. My TSH has crept back up from being normal a few months ago to now being at 5.14. I asked my doc to call me to discuss, and she said ‘oh that’s normal don’t worry’ 🤦‍♀️ After some persistence and telling her I felt awful she finally gave in and said I can come in for a blood test on Friday. I guess my question is, my TSH keeps rising if I’m on 100mcg and dropping to hyper on 125mcg so should I be alternating the dose, ie one day 100 the next 125 and so on?

I know there are certain things that are crucial to accurate testing ie stop biotin a week before, test before 9am on an empty stomach just water etc.

I’m not gluten free I know I should be but my two loves in life are milk and bread I would find it extremely difficult to give this up….🙁

[SlowDragon Administrator]

So I went back onto my normal dowse of 100mcg for a week then stopped 24hrs before I took the test.

This test won’t be accurate

You need to be on constant UNCHANGING dose levothyroxine for minimum 6-8 weeks before retesting (especially after stopping levothyroxine for a whole week)

Essential to also test vitamin D, folate, ferritin and B12 at least once a year

What vitamin supplements are you currently taking

When were vitamin levels last tested

Request GP tests these now

Have you had coeliac blood test done

[SlowDragon Administrator]

TSH keeps rising if I’m on 100mcg and dropping to hyper on 125mcg

Results after 3 months on 125mcg didn’t show over medicated

healthunlocked.com/thyroidu...

Test was done mid day - so TSH would have been higher if tested 8am

Vitamin levels needed improving

[greygoose]

my TSH keeps rising if I’m on 100mcg and dropping to hyper on 125mcg

There's no such thing as a 'hyper' TSH. Your TSH can easily become suppressed when on thyroid hormone replacement (levo, etc.) but that doesn't mean you are over-medicated - and certainly not 'hyper'! But, you are only over-medicated if your FT3 is well over-range.

So, the important thing is: how do you feel? How do you feel on 100 mcg? And how do you feel on 125 mcg?

Dosing should never be done by TSH alone. It's not even a thyroid hormone, it's a chemical messenger from the pituitary to the thyroid to tell it to make more hormone, or ease up. Once you are hypo and on THR, that link is broken and unreliable. Dosing by the TSH is the best way to keep the patient sick. Unfortunately, not many doctors know that, but never agree to a reduction in dose unless the FT3 has been tested. That's the most important number.

[Henson1980 in reply to greygoose]

Thank you Greygoose. You would think after being diagnosed 5 years ago I would know this by now but the science behind it all still fry’s my brain!

You asked how I feel on 100 and 125. Currently on 100 and feel tired/achy all the time. On 125 I have more energy but struggle to sleep, have hot flushes and racing heart. Finding it hard to find a happy medium!

[greygoose in reply to Henson1980]

It's more than likely that even at 125 mcg you are still under-medicated. But, if you don't get full labs done after six weeks on that dose, you'll never know.

[waveylines in reply to Henson1980]

Vitamin levels need to be optimal for best results so it maybe this is part of the problem. You do need the increase but as grey goose says unless you test after being on the 125mcg dose you wont know whether it is too much. Id also address your vitamin levels. For me everything was at an optimal level but not b12 addressing that made a big difference in managing my hypothyroidism and my thyroid medication.

[shaws in reply to Henson1980]

If our doctors don't have much expertise when patient is taking thyroid hormones, then I doubt many other medical persons have a good knowledge. A GP phoned to tell me that my TSH was too low - T3 too high and T4 too low. (i.e. TSH is from the pituitary gland)

I take T3 alone, so my response to GP was "you are aware that I take T3 only, so TSH will be low as will T4 as I don't take T4 (levothyroxine) and my T3 will be highter.

His response - "but T3 converts to T4 -

My response - "No doctor it is the other way around - levothyroxine is supposed to convert to T3. T3 being the active thyroid hormone needed in our millions of T3 receptor cells and our heart and brain contain the most."

[Lanfairpwllgwyn in reply to greygoose]

greygoose you are so knowledgeable could you possibly recommend some books to read to learn more about hypothyroidism please?

[greygoose in reply to Lanfairpwllgwyn]

The ones that helped me most were Mary Shomon's 'Living Well with Hypothyroidism', right at the beginning. And, then Dr Broda Barnes' 'Hyposthyroidism: The Unsuspected Illness'. But, I'm not sure they can tell you any more than you can learn by reading on here.

[Lanfairpwllgwyn in reply to Lanfairpwllgwyn]

Many thanks 😃

[healthkiwi]

My tuppence worth - just looking at your T4 and T3, you are barely scraping into the bottom of the ranges. BADLY undermedicated! The most helpful thing I found on this site has been the information about being OPTIMAL within each range. It made everything make sense, and it's the first thing I check now when I get new results. (I wish it was part of standard medical guidance)

[Henson1980 in reply to healthkiwi]

Thank you for your response. The m problem is when they increased my levo to 125mcg 8 months ago I was experiencing major hot flushes and unable to sleep. As soon as I reduced back down to 100mcg the flushes and disturbed sleep went away so I don’t know what the answer is? Do you think may I should try alternative the dose, ie one day 100 the next 125?

[healthkiwi in reply to Henson1980]

I can't say exactly what you should do but you certainly have to do something . Many of us have to experiment.

Make sure your vitamins ferritin etc are themselves optimal not just at lower end of ranges, then increase your dose and hold it for 6-8 weeks. Symptoms may get worse for a bit, seems to be inevitable as body is rebalancing. Then retest, and if necessary increase again. Repeat the '6 weeks and test' until you feel well and results for T3 and T4 sit within top half of range.

Since you've had symptoms that scared you on a 25mcg increase, it makes sense to increase doses by smaller amounts each time. Finding your right dose can be a slow process but worth it in the end.

[Clairewalker751]

GPs dose on TSH in order for me to feel well I need T4 and T3 optimal and nutrients optimal which means my TSH is always slightly surpressed (I take a sh I would neververy small dose oN TSH I would never be well