Should I be asking for an increase in Levo?

[Feelingrubbish]

I have an appt with my endo on Thursday to discuss my latest results and those from last August and April when I was taking different amounts of levo. I always follow the suggested procedure of stopping Vit B complex a week before, early blood test and not taking levo for 24 hours. My most recent results are first:

Feb 2024 (taking 87.5mg levothyroxine)

TSH 0.97 (0.35 - 4.94) 13.5%

T4 10.9 (9.0 - 19.1) 18.81%

T3 4.3 (2.4 - 6.0) 52.78%

August 2023 (taking 100mg levothyroxine)

TSH 0.14 (0.35 - 4.94) -4.58% (suppressed)

T4 13.7 (9.0 - 19.1) 46.53%

T3 4.69 (3.1 - 6.8) 42.97%

April 2023 (taking 75mg levothyroxine)

TSH 0.94 (0.35 - 4.94) 12.85%

T4 10.9 (9.0 - 19.1) 18.81%

T3 4.0 (2.4 - 6.0) 44.44%

Quick history: I have Hashimotos and have been on different amounts of levothyroxine for several years. Thanks to advice from this forum, mainly concerning my hair loss, I feel so much better informed about my condition and the need to watch my vitamins/minerals and advocate for myself at medical appointments.

My last appt with my endo was in September when she reduced me from 100mcg to 87.5mcg. I currently take 100/75 on alternate days. She had wanted to reduce me to 75mcg as my TSH was 'suppressed'. I agreed to reduce but only to 87.5mcg. I have put on quite a bit of weight in the last 6 months and am the heaviest I have ever been (approx 80kg). I also have low energy and low mood a lot of the time. I'm sleeping well, I think due to HRT, and my bowels are much improved from a couple of years ago when I was constantly constipated.

I agreed to reduce from 100mcg as I was a bit concerned about my TSH being suppressed although it had been suppressed on previous occasions in 2022 as my levo was increased from 50mcg to 75mcg but it settled down. My endo wasn't worried at that point as she was trying to increase my T4 to the upper quartile to try and help my hair loss. This didn't work and she has forwarded me on to a dermatologist about this.

I haven't tested my vitamins/minerals since August 2023. However, I have been much more consistent with taking Vit B complex, Vit C + iron, Vit D+K and magnesium every day. I think my levels should be improved from my latest results which were from last August:

Vit B12 476 (145-569)

Ferritin 64.8 (13-150)

Serum folate 33.3 (8.83-60.8)

Vit D 86

My questions:

1. Should I ask to be increased back to 100mcg to see if it will help with my other symptoms (weight, energy, mood)? Will increasing my T4 help with these?

2. Any idea why my T3 has not really changed in spite of medication being increased/reduced whereas my T4 has been up and down?

[TiggerMe Ambassador]

1. Yes, as even on 100mcg your free levels were low, you could probably do with 112.5mcg if not 125mcg which is more inline with your weight... most people feel better with fT4 around 75% and fT3 not far behind

2. Looks like your body has desperately been trying to produce as much fT3 as it can but you have never been on a fully replacing dose so there is only so much it can do with limited the supply

Ask here to treat you based on your free levels and symptoms or investigate why your pituitary isn't signalling well enough to raise your TSH 🤗

[Feelingrubbish in reply to TiggerMe]

Thanks TiggerMe. I appreciate your reply.

I'm not sure my endo would go for an increase to 112.5 or 125 as she was very sure that when my TSH was suppressed it would be bad for my heart and bones. It was hard to disagree with her (a trained specialist) and I don't want these issues. My family has history of heart conditions and I am often struggling with aches and pains (normally back, hips or knees), so I was prepared to drop to 87.5 to try and improve my TSH, but it seems as a detriment to my T4 🙁

I've not really read up about the pituitary gland so am off to do that now...

[SlowDragon Administrator in reply to Feelingrubbish]

Should I ask to be increased back to 100mcg to see if it will help with my other symptoms (weight, energy, mood)? Will increasing my T4 help with these?

absolutely

Retest in 8-10 weeks

Which brand levothyroxine are you taking

2. Any idea why my T3 has not really changed in spite of medication being increased/reduced whereas my T4 has been up and down?

Your not taking high enough dose levothyroxine

Likely vitamin levels still not optimal

Insist Endo

Increase Levo to 100mcg

Retest vitamin levels including full iron panel test for anaemia including ferritin

Stop iron supplements 5-7 days before test

When you stop vitamin B complex week before testing, remember to take separate folate instead

[Feelingrubbish in reply to SlowDragon]

Thanks SD

Levo brand is Teva which I know can be a problem for some but I've always had this brand from the beginning.

Thank you for the advice about iron testing, I am planning to order a private test soon.

[TiggerMe Ambassador in reply to Feelingrubbish]

The low TSH theory has been debunked but the NHS haven't caught up, you need treating on your free's as these are the actual hormones circulating in your system and having too little of fT3 is bad for you heart, your bones and everything in between.

They are badly trained specialists who look at TSH and not at symptoms and free levels, perhaps worth asking her why your TSH is so low when your hormones are also very low?

Is she trained in Thyroid matters or is she actually a Diabetics Endo?

I have had to have this conversation with my NHS Endo and she now agrees to dose me based on my frees 😁

Absolutely research and questions often the Endo answers are lacking in sense 🙄

Some great info in this link... healthunlocked.com/thyroidu...

[Feelingrubbish in reply to TiggerMe]

Thanks for the link 🙂

I don't know my endo's specialism but I will certainly talk to her about having low T4 and T3. With regards to T3, is half way through the range not good enough?

[TiggerMe Ambassador in reply to Feelingrubbish]

Mid range fT3 might be ok for you but if you are still symptomatic then maybe not, I think many find a happy spot around 60-75% but we all have to fine tune doses and timings to find our own personal sweet spot

[greygoose in reply to Feelingrubbish]

TSH has nothing to do with hearts and bones. Low TSH does not cause heart problems, and it does not cause osteoporosis.

TSH has two jobs and two jobs only:

- it signals your thyroid that more thyroid hormone is needed in the blood: your thyroid no-longer responds because you are taking thyroid hormone replacement and your thyroid is 'asleep'. So, you don't need it for that.

- it stimulates the proteins necessary for conversion of T4 to T3. However, it's not the only variable involved in conversion, and as you have Hashi's, you're probably a poor converter, anyway, low TSH or not. So, there's not point in taking TSH into consideration to the point of ruining your health.

I am often struggling with aches and pains (normally back, hips or knees)

Probably because you're under-medicated. Weight-gain and low energy are also due to that.

2. Any idea why my T3 has not really changed in spite of medication being increased/reduced whereas my T4 has been up and down?

Possibly - probably - because of the Hashi's. Levels fluctuate with Hashi's and are not 100% reliable.

Your endo should not be dosing by the TSH, and it just goes to show how ignorant she is. TSH isn't even a thyroid hormone, it's a pituitary hormone and once it gets below 1 it's a very unreliable indicator of thyroid status.

Have a look through this post and you'll probably find plenty of info to back-up your argument.

healthunlocked.com/thyroidu...

And, remember, your doctor - endo/GP - is not there to dictate to you. S/he is there to advise but in no way are you obliged to take their advise. If you don't want to reduce your dose, say no.

[Feelingrubbish in reply to greygoose]

Hi gg - thank you for the link and extra info. 🙂

I'm realising that I need to be stronger with my endo. She just was scaring me a little when she mentioned heart and bones issues and it felt quite close to home.

[greygoose in reply to Feelingrubbish]

Yes, they often do that to get their own way. I think they enjoy it.

[janeroar in reply to Feelingrubbish]

Get a different endo if she’s scary and not helping you. It’s your body not hers.

[Feelingrubbish in reply to janeroar]

She's actually really sweet, but brought out the 'suppressed TSH is bad for your heart and bones' line with me last appointment and I found it hard to prove her wrong. Thanks to this forum, I feel better informed and will stand my ground next time.

[DippyDame]

Feb 2024 (taking 87.5mg levothyroxine)

TSH 0.97 (0.35 - 4.94) 13.5%

T4 10.9 (9.0 - 19.1) 18.81%

T3 4.3 (2.4 - 6.0) 52.78%

These results suggest to me that your thyroid is struggling/ failing and as a result is pumping out a lot of T3 to help you function.

You are undermedicated and need to increase your levo

I suspect you felt better on 100mcg T4 and would likely benefit more from further increases.

She had wanted to reduce me to 75mcg as my TSH was 'suppressed

I'm sick to death of endo's fixation on TSH....it is making patient's suffer.

They do not understand thyroid disease or medication and follow a list of unhelpful guidelines that appear on their computer screens...like an instruction booklet for a washing machine. We are human and all very different, with different needs....so often forgotten!

How much attention is this GP paying to what you tell her about your symptoms....they are an important part of diagnosis. Your symptoms suggest undermedication

Doctor doesn't always know best I'm afraid.

Your vit D is too low...should be over 100....but you are working to optimise nutrient levels....good!

Optimal nutrients should improve thyroid function

Also...refer to your increasing symptoms when speaking to GP, tick them off on this list and show her

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

Re TSH..

bmcendocrdisord.biomedcentr...

Time for a reassessment of the treatment of hypothyroidism

John E. M. Midgley, (our late diogenes) Anthony D. Toft ( former TUK advisor), Rolf Larisch, Johannes W. Dietrich & Rudolf Hoermann ( all T3 scientists)

and

thyroidpatients.ca/2021/07/...

So YES! You need to ask for an increase, initially to 100mcg, test again after 6/8 weeks and possibly increase then to 125mcg...repeat test after 6/8 weeks.

We're all here to help....just ask.

[Feelingrubbish in reply to DippyDame]

Thank you DD - your comments are so helpful and I will spend some time following those links.

I do need to retest my nutrients and see if my levels have improved. My endo hasn't requested those tests for a while so I need to do that independently.

[SlowDragon Administrator]

post discussing gluten year ago

healthunlocked.com/thyroidu...

Are you now on strictly gluten free diet

And/or dairy free diet

[Feelingrubbish in reply to SlowDragon]

No, to both of those 🙄. I have considered the effect of going gluten free on my family/husband and it seems really tricky to have a different diet.

[SlowDragon Administrator in reply to Feelingrubbish]

It can take a while to get your head around trialing gluten free

Take 2-4 weeks working out what you would eat instead at each meal

Loads of alternatives available

[SlowDragon Administrator]

August results show you needed dose INCREASE…..not reduced

[Feelingrubbish in reply to SlowDragon]

Thank you SD 🙂, I need this forum and all the great advice I've been receiving. I am determined to be prepared for my appt.

[Bearo]

According to some experts, ferritin levels of at least 40 ng/ml are required to stop hair loss, while levels of at least 70 ng/ml are needed for hair regrowth. The optimal ferritin level for thyroid function is between 90-110 ng/ml.

From drhedberg.com/ferritin-hypo...

[Feelingrubbish in reply to Bearo]

Thanks Bearo

I am working on my ferritin levels. Unfortunately, my endo no longer thinks she can help me with my hair loss and forwarded me to a dermatologist.

He has diagnosed me with 'female pattern hair loss' 🙁 telling me it's hereditary as my mum (now 87) is practically bald on the top of her head. I'm not so sure as she didn't start losing her her until she was in her 70s and I'm only 57. She also had an issue with her thyroid in her 40's and had her thyroid removed and has been on Levothyroxine every since.

I am now using Regaine mousse every night in an attempt to see if I can get some regrowth. It might be working 🤞. However, I know I can't ever stop using it or any new growth will fall out! Very depressing but I'll try anything to try and stop the thinning and hair loss.

[Bearo]

I recall reading something about rosemary oil. You could Google that…….meanwhile work on raising ferritin through diet.

[Feelingrubbish]

For anyone who's interested...

I had an appt with my endo this evening. At first, she said my levels were okay and I felt she was trying to dismiss me. When I asked to increase back to 100mcg, she talked about if my TSH goes suppressed again then I risk possible heart issues and bone loss and osteoporosis. I asked if it was okay then to suffer with weight gain, lack of energy and low mood? She then agreed to increase to 100mcg and reassess in 8 weeks.

Interestingly, she did then say that if, after 8 weeks, I have suppressed TSH, that she could prescribe a small amount of T3. I was really surprised but happy that we have a plan.

Thank you to everyone who commented on my post. I really appreciate your advice and support 🙂

[TiggerMe Ambassador in reply to Feelingrubbish]

Well done, that was a bit of a curve ball then! You certainly need more T4 but your fT3 isn't bad so a bit odd to offer T3 when you have plenty of headroom to increase fT4 you've not had that above 50% yet??... how were you feeling last August?

Honestly how their minds work is a mystery, I'd be looking to add another increase of T4 if you get similar to last August results in 8 weeks time... before trying T3

[Feelingrubbish in reply to TiggerMe]

Last August, I felt much better than I do now. Looking back at my results over the last 2 years, I reckon I felt the best when my TSH was suppressed and my T4 much higher than it is now. My endo is pretty insistent that she doesn't want my TSH suppressed so that's when she mentioned T3.

If, in 8 week's time, my TSH is suppressed and she reduces my Levothyroxine but adds some T3, what levels should I be looking for?

[TiggerMe Ambassador in reply to Feelingrubbish]

If, in 8 week's time, my TSH is suppressed and she reduces my Levothyroxine but adds some T3, what levels should I be looking for?

This is what I don't understand, your fT3 has always been quite good 40-50% you very obviously need more T4 to get your fT4 up to 70-80% and likely your fT3 will also rise, so what about low TSH your HPT axis is obviously not functioning correctly, you need to be treated on your free levels

If she gives you T3 then your TSH will be supressed after the first dose and unlikely to come back up, so then how does she plan to treat you, torture you by lowering your T4 even further?

What you need to trial first is a decent replacement dose of T4 maybe 112.5-125mcg and an Endo who actually has a clue 🙄 and listens to you and your symptoms!

[Feelingrubbish in reply to TiggerMe]

Oh... does adding T3 lower TSH as well? I'm a bit confused.

My endo gave me the impression that it's very important to keep my TSH in range. She wasn't particularly bothered about improving my T4 or T3, but was prepared to try something to make me feel better. If adding T3 will make my TSH suppressed as well as 'too much' Levo, I'm even more confused!

[helvella in reply to Feelingrubbish]

TSH level is controlled by the pituitary.

The pituitary's output of TSH adjusts according to the blood levels of T4, T3 and TRH (from the hypothalamus).

Indeed, within the pituitary, the T4 is converted to T3. The blood T3 and T3 from conversion add together in effect. The more T3 there is, the less TSH is produced. The less T3 there is, the more TSH is produced.

But this is a super-simplistic description.

[TiggerMe Ambassador in reply to helvella]

Simplistic but seemingly just what this Endo needs to start her learning curve?

[TiggerMe Ambassador in reply to Feelingrubbish]

Don't get me wrong T3 is great 'if' you need it but it's a whole other can of worms (especially with a TSH chasing Endo) and from what I've seen of your results more T4 is the first step 🤗

[Feelingrubbish in reply to TiggerMe]

Sounds like I do need to look out for a new endo!

[TiggerMe Ambassador in reply to Feelingrubbish]

You might be able to train this one up 🙃that's what I'm working on with mine... as long as you know what you need it could work well...is she private or NHS I wouldn't want to be paying for her?

[Feelingrubbish]

'train this one up' 😆 She's NHS, I can't afford private care 🙁

[TiggerMe Ambassador in reply to Feelingrubbish]

I'd stick with and see if you can't guide her to being a better Endo, she might even have done some reading up since you last saw her 😬.... also a little surprised you were accepted for referral so she has scope😉 some of the others likely to be a complete lost cause 🙃