Help with blood results please

[Sunshine388]

Hi, please could I have some advice on my husbands blood results? These were fasting bloods and dose taken after as recommended on here. He has hypothyroidsm for 14 years following hashimotos and is on levothyroxine. It was previously fairly well controlled until last year but he hasn't felt 'well' since last summer. He is constantly tired, little motivation and constant 'brain fog'. (Last years blood results are at bottom of post.) GP says latest results are normal so is now saying it is not a thyroid problem and more chronic fatigue syndrome or possibly long covid. He has an endocrinologist appointment tomorrow, any advice or opinions of what we should be asking would be appreciated.

Levothyroxine dose is 132mcg

TSH 3.32 (0.1-5.0) T3 5.6 (3.5-6.5) T4 21 (12-23)

GP said he'd checked vitamins in September:

Vit D 48.1 (50-150)

Vit B12 682 (200-900)

Folate 11.3 (3-12)

Can't see that ferritin was done, however Haemoglobin 165 (130-180) so presume ferritin is ok.

We retested Vitamin D privately in January, it was 61 (50-150). He is now supplementing with 1000 units a day to optimise this over winter anyway.

Previous results...

------------- Dose ----T4 (12-23) -- TSH (0.1-5) -- T3 (3.5-6.5) --- Dose changed to

06/2020 - 137.5 ---- 27 -------------- 4.5 ------------ x ------------- down to 125

03/08/20 - 125 ------ 21 ------------- 5.32 ----------- 5 ------------- down to 100

01/09/20 - 100 ------ 18 ------------- 14.7 ----------- 5.0 ----------- up to 137.5

12/10/20 - 137.5 ---- 26 ------------- 1.18 ------------ x ------------ same 137.5

26/11/20 - 137.5 --- 25 ------------- 0.96 ----------- 6.1 ------------ down to 132

07/01/21 - 132 ------ 21 ------------- 3.32 ----------- 5.6 ------------ same 132

Only bloods done fasting and first thing in morning were latest set (07/01/21) as never given this advice before. Is it unusual for a change of 5mcg in dose to cause such a change in T4 and TSH over 6 weeks? I accept this may partly be due to them being the only fasting bloods.

Thanks in advance for any help, we are at a loss and struggling a bit.

[tattybogle]

Interesting results ... with much bigger changes to TSH than you would expect for small dose adjustments . And also in the past, and again on this most recent test, TSH has been much higher than you would expect for the fT4 /3 level.

Even if you taken into account the potential difference between TSH highest in early am and lowest about 2pm , it's still a big difference.

At least GP has now learned to try much smaller more subtle adjustments, which would seem to make sense to me.

Maybe his body just doesn't like all this change and want 's to be left alone on the same dose ?...... sorry , that's not a very scientific opinion, but it's the best i can come up with , i can't see that the GP is making any obvious mistakes, as it's hard to know what to do with dose in response these results when fT4 doesn't seem to match TSH ,and TSH goes wandering so much without good cause.

I'm a bit stumped.

Ignoring the slightly over range fT4 result in October , but thinking about symptoms only, did you think the dose needed to be reduced from 137.5 to 132 ? , ie were there any symptoms on 137.5 that suggested overmedication ?

[Sunshine388 in reply to tattybogle]

Thanks for your reply. We wonder if the strange results were potentially due to possibly having covid last March. But it doesn’t fully explain it and doesn’t explain current results!

Endocrinologist suggested staying on same dose for longer so that’s why gp is trying not to adjust bloods after each test and has kept on same dose for longer. But still doing bloods 6 weekly for monitoring. So your theory is the same as the doctors!

As for October, he really struggles to tell the difference between been over and under tbh. However he was very tired, irritable and on edge which we find more if he is hyper or over medicated so think the dose reduction fitted symptoms but were wary of much of a change. He does however now feel like he might be going hypo, which is a potential due to how much blood results had changed after 6 weeks. Next bloods in 2 weeks.

We’re at a loss too 😞 just want him to start feeling well!

[tattybogle in reply to Sunshine388]

It almost looks as if his TSH is being rather too reactive as in ,' push it a little , but it moves a really long way,' but i don't knowhow much smaller a push you could give it than 137.5 to 132 !

When he was stable , before this all kicked off , did he ever have TSH at 3 ? What was his previous 'normal for him ?'

It's all very well Gp saying 'normal' now , but i would not say it was entirely normal to go from TSH 1 to TSH 3 with such a tiny reduction in dose,

If i had to decide what to do next , i'd ignore any suggestion of CFS/ME, only because they don't have any useful treatment for that (other than 'learn to pace yourself and make the best of your different life' )

....and there is definitely no evidence anywhere that CFS/ME has any effect like making TSH wander around like his is doing. (mine doesn't , and it could be argued that i have CFS/ME)

I think i'd put dose back to 137.5 and leave it there for at least 6 months but still test to see what TSH does next. At least then you'll know if TSH is wandering by itself , or just being too reactive to tiny changes.

(In the meantime psychologically it might ? be helpful to decide it is an effect of covid, and choose to believe it will settle down in time. ? )

I'm grasping at straw's to know what's best really, but i'd try to keep the Endocrinologist tomorrow interested in the 'wandering TSH', rather than letting him talk about CFS/ME.

[Sunshine388 in reply to tattybogle]

I’ve just had a look back through all the blood results we have and it seems his T4 is often on the high end or out of range with TSH a bit all over the place in the past too. Problem is most blood tests were done when he’s not felt right so we don’t have a baseline for when he’s well. I’ll see if I can upload a list of his results. If the list works, his dose was always somewhere between 125-150mcg for the range of blood results we have.

Sticking with the same dose for 6 months and getting regular blood tests sounds sensible. The only problem will be if he thinks he needs a dose change to help make him feel better and bloods show a change would help, he’ll struggle to not change it.

I’m glad you think to ask endocrinologist more about ‘wandering tsh’ than chronic fatigue. I think my husband accepts it could be chronic fatigue but also feels he’s been fobbed off a bit when it feels so similar to when he was first diagnosed with hypothyroidism.

[tattybogle in reply to Sunshine388]

Mmm ... i see what you mean , his TSH has always been all over the place, and often much higher than i would have expected when fT4 and fT3 was fairly high. If you compare them to mine from 2003 to present (they are listed in my profile) you'll see how much more his TSH wanders around than mine which usually stays firmly under 0.5 even though myfT4's have been more variable than his. (ignore the one TSH of 7 , that was me, experimenting)

Now that i've seen how much his TSH wanders even on pretty stable dose , i think my previous comment about staying on same dose for 6 months is a bit redundant , i was just trying to rule out that it was the dose changes causing the instability, but it seems it's unstable anyway ? Although i can't tell when /if dose was changed from that list .

Have a suspicion i'd still be none the wiser though.

Has he ever felt properly well on Levo ?

I've never really been 'right' again, hence me having been down the CFS/me path and bought the 'T'shirt, but i think it's a rubbish theory that i coincidentally got cfs/me at exactly the same time i got up to 150mcg Levo and still wasn't 'fixed' , when i'd had no problem before i became hypo , and there has never been any question about the autoimmune hypo being 'genuine'

I've been sort of managing life ok for many years on 150 mcg, but then over the last few years (starting a few years after menopause ) i have really struggled and fT4 has been going all over the place for no reason, and dose has needed messing about with, I've thought this was most likely the effects of post menopause playing around with my thyroid metabolism , but being male we can't use that explanation for your husband.

Just waffling now , cos still got no sensible answer for you , wish i had

edit , i DO still think you should ask lots of questions re. the cause of wandering TSH history to Endo ....... i would, if i had anything as interesting as that in my results to point them towards, but mine just look like 'overmedicated ' so they wouldn't be interested , just insist i reduce dose.

[Sunshine388 in reply to tattybogle]

Sorry not replied sooner to this. He has previously been well on Levothyroxine, had an active life, cycling to work and playing sports etc. We did find every 6-12months he’d go hypo/hyper and need a small dose change but if we caught it in time it didn’t impact life too much. Sometimes needed a couple of weeks off work until dose change took effect though.

We pointed out how much TSH fluctuates to the endocrinologist but he didn’t seem too interested in it. He said it’s clear he’s extremely sensitive to minor dose changes, but didn’t have any insight or suggestions to help. We discussed T3 but his T3 is generally high-ish in range so endo said it wouldn’t help and is even more difficult to achieve right balance. They have requested more bloods to check for other autoimmune diseases that could be causing the fatigue but if all normal will probably go down the chronic fatigue route. He said husband just had to accept that with his body so sensitive to changes in levothyroxine, he will have times when he doesn’t feel well 😕

Had a look at your profile and seen your TSH is a lot lower. Sounds like you’ve had a rough time so hope you’re feeling better soon. This endocrinologist seemed to class a TSH below 1 (0.96) as ‘suppressed’ which I found a little odd when a lot of things say aim for it to be low!

[tattybogle in reply to Sunshine388]

Yes there seems to be a wide variation in what different people consider to be 'suppressed' but thinking 'anything below 1 is supressed' is a bit daft... as that would include a vast amount of healthy people :- healthunlocked.com/thyroidu... But yes, im my case just having a low TSH and fT4 high in range , has not by itself fixed the problem , and my fT3 has never been really low (level has varied between 32-63% when it's been done in the past) , so that is not an obvious culprit , well, not as far as en Endo would consider it anyway.

Your husband , and you, are having such a frustrating time.

It really suck's when you know you're not yourself anymore , and you don't have a reason.

Sorry i don't have any more constructive help , but at least i can say , 'i get it, '

xx