Bloods - feeling like I am about to crash - Thyroid UK

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Bloods - feeling like I am about to crash

AleB profile image
AleB
17 Replies

Hi All

I was advised by endo to increase T4 by 25mcg as at the 27th September 2024. This was after getting too hot, not sleeping and very sweaty day and night and banging heart rate (too high for me).

Well after 15 weeks I had a piercing headache, massive mood shift, felt depressed, cold, aches and bone cracking (shins).

my results at 16 weeks were as follows:

Ferritin: 137 ug/L (range 30 - 264)

Folate: >45.4 nmol/L (range > 7)

B12 Active: >150 pmol/L (range > 37.5)

Vitamin D: 121 nmol/L (range 50 - 200)

TSH : 1.950 mIU/L (range 0.27 - 4.2)

Free T3: 3.5pmol/L (range 3.1 - 6.8)

Free T4: 18.9 pmol/L (12 - 22)

I came down by 12.5mcg levo 3 weeks ago, I feel dizzy, my hair is really thin, I have water weight (swelling of the ankles especially the left ankle). Tired again, to be honest I have been out of the house for twice in a whole month.

The endo, as I suggested, requested the following tests from my GP Cortisol, testosterone, LH, FSH, Oestradiol and an ESR. The GP has refused. I have run out of options now. I don't think the endo knows what he is doing with the T3, he's just looking at the TSH. I had managed to get my T4 to 75% through range, when I tried to get the Free T3 up by adding a small amount of T3, I lost more weight and then I couldn't walk, then the heart rate goes up, can't sleep and get really hot and sweaty. I don't know what to do now.

Please help.

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AleB profile image
AleB
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17 Replies
Regenallotment profile image
RegenallotmentAmbassador

hi, poor you, that sounds rough.

I’ve had a quick scan through your previous posts and it’s not your first rodeo with results and symptoms.

I can’t see any info in your bio, it’s really helpful to have some history there, what you have tried what has worked etc.

what time of day was your blood test for these latest results and had you taken your previous dose of T4 that morning?

How long are you leaving between dose changes before changing again or changing back?

Are you on HRT?

Does the adrenal question you have link to the same way you felt 4-5 years ago when you were having DHEA tested ?

Sorry loads of questions but hopefully this will help uncover some ideas for you 🤗

AleB profile image
AleB in reply toRegenallotment

Hi

I had my blood test at 8.30am, fasting, and took meds after the test. My last dose of T3 was 10pm. I split my T4. As I mentioned, I have only really dropped the T4 by 12.5mcg in the last 3 weeks. So I am now feeling the effects of that drop, the T3 was dropped in September from 3.75mcg to 2.5mcg, split into 1.25mcg am, and 1.25mcg at 2pm. I am not taking HRT, I have been prescribed it, though I have not had any blood tests relating to the menopause. I wondered if I should get tests done and also cortisol. When I was on the 3.75 of T3 my adrenals were the best they have been, no balance issues, however I still had poor eyesight and fatigue. I will update my bio to give a bit more background history.

GlowCoach profile image
GlowCoachAdministrator

So what dose Levo are you taking now?

Looking back on previous post you were taking only 50mcgs Levo + small amount of T3, likely far too lower dose of both. Most people on a combi dose need 100mcgs Levo + 5-20mcg T3.

If your Endo is keeping your TSH within range it may be that they never make you well and you might need to look elsewhere for an Endo.

Vitamins look great but have you had an iron panel to ensure that level is good?

AleB profile image
AleB in reply toGlowCoach

Hi Jaydee

I take 3 days at 100mcg levo, split am and pm, and 4 days 87.5mcg levo, again, split am and pm. I take 1.25mcg T3 am with the levo and then 1.25mcg T3 at 2pm, last dose of T4 at 10pm. Prior to this (3 weeks ago), I took 4 days at 100mcg levo and 3 days at 87.5mcg levo but with the reduced T3. My symptons during that increase of T4 was of freezing cold, bone cracking, stiffness, muscle aches. It did however improve my sleep for a few weeks and then back to poor sleep, sweating and then poor mood. I have held off with HRT. Would I need a full iron panel, I take B-Complex. My Ferritin looks ok... for many years it (on T4 only) it was always low. If I increase T4 I will be well over the ideal 75% range or does this not apply? I have tried NDT (WP thyroid) back in 2018/2019, went back to T4 couldn't get back to what I used to take 125mcg, now on T4/T3 combi but have been up and down for the past 2.5 years.

GlowCoach profile image
GlowCoachAdministrator in reply toAleB

When we change dose, the minimum time to retest levels is 6-8 week, loger is often more accurate as levels can still settle a few months on.

So testing after 3 weeks wont give accurate results.

The last dose before the test should be timed for levo - 24hrs, T3 8-12 hours. Particularly for T3 it has a short half life and leaving too long will give results with a false low. Just delay when you take your dose the day before.

Ferritin can be good or even high when serum iron is low which is why I suggest an iron panel. Also if there is any inflammation that can falsley raise ferritin. Did you have a CRP or ESR test at the same time?

The reason you're still symptomatic through all this is either your FT4 has been too low or your FT3 as well. You now need to increase T3 and leave Levo where it is. Aiming for 70% through range for both FT4 & FT3.

Suggest you change Endo of they will only offer a micro dose of T3.

AleB profile image
AleB in reply toGlowCoach

Hi Jaydee

I had a CRP test at the same time on the 21st Jan, it was 0.15mg/L (range <3).

tattybogle profile image
tattybogle

so.

27th sept , reduced T3 by 1.25mcg/ day

and increased levo by just 3.57mcg /day (25mcg a week)

8th November 8am: (test done too soon after dose change )

TSH 1.65 (0.27 - 4.2)

fT3: 4.1 (3.1 - 6.8)

fT4: 19.6 (12 - 22)

retested after 16 wks:

TSH 1.95 (0.27 - 4.2)

fT3: 3.5 (3.1 - 6.8)

fT4: 18.9 (12 - 22)

since that test you've reduced levo by 1.78mcg / day (12.5mcg a week). and been on that for 3 weeks now.

3 weeks is too soon to know how that will feel yet.

but looking at the increase in TSH, and the reduction in fT3 since sept .....

i think you should be looking towards adding back the other 1.25mcg of T3

(so i would try 3.75mcg T3 with current dose of levo)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

one thought ... have you ever tried taking T3 dose in one daily dose rather than splitting it ?

i know that sounds counter intuitive when it feels like it's already too much ....but i have found i'm coping better with a single dose of 6.25mcg T3 taken around 11am (levo split am / bedtime)..... i was doing 2x4mcg T3 , but while it didn't initially interfere with sleep , it did after a while , and after a few wks 8mcg had started to feel like too much (again) ..

logically , i like the idea of splitting dose , but twice now i've run into similar problems to you when taking 2 or 3 doses and both times i've felt more stable by taking very slightly less as one dose.

AleB profile image
AleB in reply totattybogle

Hi Tattybogle

I had wondered about toying with the idea of taking T3 altogether in the morning. Worth a try ... should I wait for the drop in T4 and add back the T3 or do I drop a further 12.5mcg as the previous bloods done on the 8th November 2024 were at 19.6 which is 76%

tattybogle profile image
tattybogle in reply toAleB

i would : not lower levo further , increasing T3 will lower it a bit anyway.

not wait for drop in ft4 ,,, 12mcg a week is so small as to be more or less insignificant .

keep levo same and try 2.5mcg in morning single dose , and if after a few wks , it doesn't blow your head off, try 3.75

AleB profile image
AleB in reply totattybogle

Thank you Tattybogle ... the thought of my head blowing off raised a smile. :) Thanks so much for your help. I'll give it a go.

Regenallotment profile image
RegenallotmentAmbassador in reply totattybogle

I've tried this too and my energy levels tank midday if I split my T3 in half, if I take 10mcg at 6am I'm like the duracell bunny, just keep going all day and sleep like a log - its very odd when so many recommend splitting, I keep re-trying but get the same reaction. I'm going to only do it on day before blood tests from now on.

AleB profile image
AleB in reply toRegenallotment

Thank you ... I have taken the whole lot of T3 this morning. I will be keeping tabs on it so to speak for the next few weeks. Thanks again.

tattybogle profile image
tattybogle in reply toAleB

if it feels too much , try going for a brisk walk. i find i need to 'use it'

Regenallotment profile image
RegenallotmentAmbassador in reply toAleB

And how did it go so far?

AleB profile image
AleB in reply toRegenallotment

Well for the past two days I haven't had to go to bed at around 2.30pm. That said, I am still hot and restless at night. The first bight I slept from 10.30om until 5.30am. The second night the same, last night, it was gone 11.30pm, too hot and woke at 5.38am this morning. I wonder if theT4 is too high, I noticed since the endo had me increase the T4 by 25mcg (I have reduced by 12.5mcg), I am very short tempered, I also feel a bit wired!

Regenallotment profile image
RegenallotmentAmbassador in reply toAleB

It’s tricky because sometimes these things are short lived and it’s better to see it the rough for the full 6 weeks but yes, if you think FT4 is too high best to reduce it a little.

AleB profile image
AleB

Thanks for your post, I'll try to grin and bear it. Xx

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