Self medicating

[Cassav]

Hi all,

I am going to retest my thyroid and vitamin levels in a couple of weeks after 6 weeks of a dose increase from 125 to 150 mcg of levo. I'm anticipating my t4 being high in range and my t3 levels being low as I still have many unresolved symptoms. My previous post a month ago showed that I'm a poor converter, although I didn't follow the correct testing protocol so not 100% accurate. So I think I will probably need some t3 at some point. Since my levo dose increase I actually feel worse; my muscles ache, sleep has really deteriorated etc. I'm hanging on for another week to see what my numbers say.

If my numbers are as I predict am I just better off self medicating with t3 rather than bothering with the hassle of seeing a private endocrinologist to then transfer to an nhs one? Some people have mentioned rosewater labs. What are peoples experience of endos? Are they actually useful 😅? Or is it really just up to us to monitor the effect of our medication?

Thanks 😊

[Hidden]

When you say that you didn’t follow the correct testing protocol what do you mean? How long did you leave between meds and test?

Can you post your last blood results (with ranges) and vitamin status?

Edit

I see you have a closed post today asking for information about endocrinologists.

Be aware that changing between Private and NHS endos is not easy and can, in fact, create problems.

You ask whether endos are ‘actually useful’. Let’s put it this way, they’re either good or they are awful 😞

[Cassav in reply to Hidden]

I left 36 hours betwen my meds and test.

results from Sep 23 were:

T4 13.8 10.8 - 25.5

T3 2.9 3.1 - 6.8

TSH 2.54 0.27 - 2.4

B12 761 180 - 999

Ferritin 125 13 - 150

Folate >20 3.89 - 26.8

Vitamin d may 23

51 forgot the range

Thanks for the tip about it being difficult to switch!

[Hidden in reply to Cassav]

I thought you might have done! In that case, your thyroid results show results which are ‘false lows’ (especially in FT3). Whilst one can have a good guess at conversion status, I’m afraid that you must repeat blood tests under the correct conditions for any real conclusions to be reached.

Vitamin D is low.

Grasp the nettle and have them done again so that we can help 😉

[Cassav in reply to Hidden]

Thanks yes I'm going to test everything again next week following the proper protocol. I've been supplementing vitamin d3 with k2 and magnesium so I hope that my vitamin d has improved. And surely the hot summer helped!

[HealthStarDust]

Have you had any symptoms resolve since starting Levo? You may just need another increase and time.

I hear you! I feel a lot worse in so many ways.

It’s a drag 😐

[Cassav in reply to HealthStarDust]

I started on 100mcg and my sleep improved and random anxiety improved straight away. But with the further increases to 125mcg and 150mcg I feel worse! My sleep has been awful the last week 😞.I know it can take a while for the dose to settle and it will be 6 weeks since my increased dose next week so I'll be able to test

[Hidden in reply to Cassav]

I recognise this pattern too. It’s so disappointing.

[Cassav in reply to Hidden]

Why can't levo behave? 😄

[Hidden in reply to Cassav]

It’s got a tortoise mentality.

[HealthStarDust in reply to Cassav]

Possibly going too fast? Maybe you need to hold longer or have more gradual increases? It’s a tough balancing act. In my experience, I do know random symptoms appear and dissipate and others persist.

I hope you figure it out. Maybe T3 would be better.

[Cassav in reply to HealthStarDust]

It's so hard, isn't it? I've been waiting 6 to 8 weeks between increases. I am impatient to ttc but I know that I can't until I'm more stable.

[HealthStarDust in reply to Cassav]

I’m in the same position. And, I’m very wary of my increasing age while this treatment actually starts to improve things! And, my levels are fine to conceive now but I’m simply not well enough which is more important.

[SlowDragon Administrator]

Looking at your first post you are looking TTC ……so yes absolutely you will need to see an endocrinologist

[Cassav in reply to SlowDragon]

Thanks. I do have an nhs appointment in December but I may see a thyroid uk recommended one privately.

[HealthStarDust in reply to Cassav]

If you are trying to conceive then be mindful that you will not be supported to have T3. Obviously, no can stop what you do outside of the NHS.

[Cassav in reply to HealthStarDust]

I hope that if I'm already on T4/t3 therapy that would be supported? Or not supported but they would accept begrudgingly!

[Hidden in reply to Cassav]

Who knows? Opinions are diverse

[HealthStarDust in reply to Cassav]

They’d accept begrudgingly one would hope but some may even refuse to treat. It’s a tricky one. Some endo’s think they are gods and dislike self informed treaters. It complicates their world view over the control they should have over us.

[SlowDragon Administrator in reply to Cassav]

More importantly at this stage to get all four vitamins OPTIMAL

Vitamin D needs improving

What vitamin supplements are you currently taking

Ferritin looks good

Are you taking B12 and folate

Don’t want too much or too little

Folate and B12 and Neural tube defects and autism

healthunlocked.com/thyroidu...

I know it can take a while for the dose to settle and it will be 6 weeks since my increased dose next week so I'll be able to test

Yes test with last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you taking

Are you on strictly gluten free and/or dairy free diet

[HealthStarDust]

I think you need to be mindful that the numbers are a guide (and mostly a crappy one at that on the path to correct treatment, and you’ll just have to trial and error things mostly) much more important to go with how you feel. You just don’t know where in the ranges your happy state is. And, it is likely to change over time and other influencing factors (age, sex, stress etc) anyway.

It is even more important to be mindful of this when on such forums or reading research.

Be careful chasing numbers.

[Cassav in reply to HealthStarDust]

Thank you yes I will be mindful of that. I think that I possibly need to reduce the levo based on how I'm feeling but we'll see what the numbers say

[HealthStarDust in reply to Cassav]

This is exactly my point. The numbers do not tell the whole story. If only it was that easy!

You’ll learn what to do and what risks you are able to take with it as you learn more about your body throughout this experience.

Wishing you every bit of success!

[Cassav in reply to HealthStarDust]

Thank you and wishing the same for you 😊

[HealthStarDust in reply to Cassav]

Apologies if that came off as a bit shouty/frustrated. I am feeling that way so it may be coming through.

And, thank you.

[Lulu2607]

The muscle aches and poor sleep are classic symptoms of poor vitamin d level. 51 is scraping at the bottom of the range. Aim for 100, and unfortunately the hot summer won't really help us hypos where vit d is concerned. You will need to supplement all year round.

[Cassav]

Yes I did think the muscle aches could be linked to low vitamin d but wasn't aware that it could affect sleep too. I have been supplementing but I know it can take a while to improve low levels.

[Hidden in reply to Cassav]

About three months. Each 1000 IU you take will increase your levels by 10 nmol/L over that period.

With a blood result like that you need at least 3000 IU supplement

[Cassav in reply to Hidden]

Thank you I've been taking the 3000 IU better you vitamin d spray with k2

[Hidden in reply to Cassav]

That’s good! 😉

[Lulu2607 in reply to Cassav]

The effect on sleep, I believe is due to vitamin d affecting the hormone melatonin which regulates the sleep wake cycle. Low vitamin d levels adversely affect this hormone. Vitamins and hormones are all interrelated so getting everything working optimally through diet and supplements is difficult as we're all unique in what works for us.

[Cassav in reply to Lulu2607]

Thank you for explaining the link between vitamin d and melatonin. Previously I didn't have a a problem dropping off and slept from about 9pm for 6 hours. But now I don't feel properly sleepy and it's light, unrefreshing sleep with random dreams.