Advice, please, re More energy one day, then exhausted for next two - Hypothyroid, on LevoThy

[JMN2017]

Hi

I'm wondering if my current fatigue may be related to running out of T3 one day, then taking a couple of days for body to replenish or, maybe, a B12 issue?

For instance, last week I met a friend and we spent 4 hours in one shop which included a leisurely coffee and a leisurely lunch, so not exactly 'too much'. However, the following two days, I felt dreadful (as usual) as soon as I got up, just no energy or motivation. I don't sleep well anyway so was soon on the settee - 3 hrs sleep, still feeling awful, forced myself to get some lunch and tea but just couldn't wait for bed time. The 2nd day is usually slightly better than the fist day, then the 3rd day I generally feel much better, fatigue-wise (still with other hypo symptoms tho)

Y'day, I was able to do quite a lot but, today, don't feel good again, ie so tired, no energy, no motivation, just don't want to 'be', had a 3 hr sleep this afternoon but still can't wait for bedtime although I don't sleep well anyway.

On a 'good' day, I feel much better as soon as I get up. It's almost as if I have a 'tank of limited energy', so am able to do stuff but then quickly 'run out of fuel' with it taking a couple of days (variable) to refuel, and feeling so tired when getting up in the morning. Does this make any sense?

My TSH and FT4 in Oct 2016, on Levothyroxine 125mcg Mon/Weds/Fri) / 150 mcg Sun/Tues/Thurs/Sat but, due to the T4 being higher than GP was happy with, the Levothyox was reduced to 125mcg daily.

My symptoms of fatigue have got worse over a period of time but more significantly in the past couple of months or so. I'm getting repeat TSH and T4 blood test this week, plus I have the pack from BlueHorizon for TSH, FT4 AND FT3 (my surgery won't request T3, saying the lab won't do it unless T4 extremely high, hence the BH test kit)

Results - Oct 2016

TSH - 0.03 (0.2 – 5.5)

Free T4 – 31 (9 – 23)

I'm due to see my GP later next week and would like some 'ideas' up my sleeve because I doubt he'll have anything much to suggest

I'm also trying to get my GP to consider B12 being an issue so have also posted on HU PAS. Rather than duplicate posting and repeating myself, here is the link to the PAS post, if interested healthunlocked.com/pasoc/po...

Many thanks for any thoughts

[Clutter]

JMN2017,

Your FT4 is considerably over range already so I wonder how high it has to go before the lab will test FT3?

You were over medicated in October and over medication can make you fatigued but also wired and tired so you don't sleep well. You might want to try reducing your Levothyroxine dose by 25mcg if your FT4 is still over 23.

[JMN2017 in reply to Clutter]

Clutter

Thanks for your response. Heaven only knows when the lab will test T3 They seem to be a law unto themselves.

As for not sleeping, I've had really bad sleep problems for over 20 yrs, since starting antidepressants. To be honest, I don't remember when I was diagnosed hypothyroid but have never related it with sleep problems.

I used to be on 175mcg several years ago and certainly felt much better at that time. Gradually, the dose has come down and I feel worse and worse. Although I appreciate what you're saying re T4 levels, I would be very reluctant to be reducing Levo any further. I feel I'd just come to a standstill.

I think my T4 has always been at top/just over range, ie at around 24 (range as above) and the docs haven't ever worried about it. My TSH has always, since starting Levo, been quite low, ie bottom of range or even out of range.

It will be interesting what Blue Horizon test results show re T3.

[Clutter in reply to JMN2017]

JMN2017,

No need to worry about FT4 slightly over range but 31 is a bit much.

[JMN2017 in reply to Clutter]

Thanks, Clutter

I wonder why, after all these years, it's increased even tho on lower dose Levo?

Do you think B12 could be part of it? I haven't had response to my post on PAS as yet

[Clutter in reply to JMN2017]

JMN2017,

I don't think there is any correlation between B12 deficiency and high FT4.

[JMN2017 in reply to Clutter]

OK, thanks

[Stourie in reply to JMN2017]

Hi, did you take your meds before the blood test, because if you did then that would explain a low tsh and high t4 with feeling so bad.

Jo xx

[JMN2017 in reply to Stourie]

Stourie

Yes, I suspect I did take meds in am, as usual, then had blood test in afternoon, when the phlebotomist was doing a clinic at the surger.

However, I've had another test (TSH & T4) y'day plus test for BH to include TSH, T4 and T3, which was early am, before any meds/breakfast etc.

Thanks. I hadn't appreciated how it could make a difference

[Marz in reply to JMN2017]

Will be looking out for your BH test results 😊

[Ruthi]

Gosh! This takes me back! That is exactly how I was, both before diagnosis, and for the eight or so months that I was on ever increasing doses of T4 with no improvement in my symptoms. I could pull myself together for a day, but then I was wiped out sometimes for 3 or 4 days. My GP used this exhaustion to argue that I had ME/CFS but I had lived with two people who genuinely had that, and I knew the difference.

I was under Dr Skinner by then and he prescribed a trial of T3. It was magical, I was like sleeping beauty awakening! Unfortunately within a few days I was experiencing terrible side effects and so I had to stop. We tried again with the same result, and even after stopping the T3 it was two years before i could lift my arms above my head. Luckily NDT didn't produce any adverse reactions and I have been taking it ever since.

[JMN2017]

Ruthi

Thanks for your response. I'm so pleased you've found out what suits you.

I'm not keen on the T3 route, for various reasons. I'm thinking my B12 levels are too low and I'm due to see GP again next week, with some new blood results re B12. I have a post re B12 issues on PAS hence the link in the first post above.

Keep well

[milupa]

Hi - does your BlueHorizon test include a Reverse T3 test? If with such a high FT4 your FT3 comes back low it would be good to see a RT3 from the same blood draw as a further clue...

My husband's first clue to very low B12 high homocysteine low folate low iron etc etc was his very high RT3 result. He was put on T3 right away and now has all those previous lows optimised and feels better but is still reluctant to swap T3 for NTH because he saw me getting worse on NTH.

Regarding the see-saw of doing well/wiped out: In my case adrenaline kept me going despite low thyroid and low cortisol levels. So yes, an extended lunch or lively conversation was enough to completely exhaust me omce the adrenaline was out of the system. I wished I had known then what I know now and had said 'no' more often...

Good luck!