There's something not quite right with your chart. You've got FT4 twice, and FT3 three times, all with different ranges. Which just isn't possible. I would imagine that one of the FT4s is actually a TT4, but I'm not sure which one - unless these are ranges frome different labs you've used? But, for the T3, I think the (64-152) has to be a TT3, which is a pretty useless test. Perhaps you could confirm, please?
- Fatigue far worse since starting low dose Levo 25mcg (4/6/20).
Yes, it would be. Because the dose is too low. It's enough to stop your thyroid production of hormone, but not enough to replace it, so you end up with less hormone than you had before. Which is why your TSH has risen. Doctors just don't seem to understand that.
- Joint and muscle pains - hips, SI joint and right knee
Probably down to your very low vit D. Are you not supplementing that?
1) Levo not working (early I know)
Much too early! You've been on too low a dose for 4 weeks, which have dragged your levels down. And you've only been on the correct starter dose for 1 week, so you're hardly in a position to know if it's 'working' or not. But, as it's a hormone, not a drug, it has to 'work'. It just may not be doing what you want it to do. Yet. It takes at least six weeks for any given dose to reach it's full potential. You must stop thinking of it like an aspirin that will give you instant relief! lol
2) DR wants me to do 8 weeks on 50mcg and only i'm
inly 1 week in on 50mcg (previous 4 weeks on 25mcg)
Well, six weeks would possibly be better, but for some people, it does take 8 weeks to get the full benefit.
3) This low dose might actually be doing me more harm than good
Doubtful. It might if he left you on it for six months, but not in one week! With hormones, you have to start low and work up slowly. Otherwise, they can do more harm than good. So, with levo that usually mean starting at 50 mcg and increasing by 25 mcg every six weeks. Any faster could shock your system and make you worse.
5) Very low: DHEA, low LH, very low GH & taking Testosterone shots since 21/5 for Low ish T. (349)
OK so DHEA is an adrenal hormone. Have you had your cortisol tested?
GH and LH are pituitary hormones. Have you had any other pituitary hormones tested? The pituitary controls the adrenals, so if you have a pituitary problem, that could be why you have low DHEA.
Has anyone ever suggested Central Hypo? Or Secondary Hypo? Because your TSH has never been very high, has it? TSH is also a pituitary hormone.
My plan is to get full bloods after 4 weeks on this 50mcg Levo (3 more weeks) & take from there !
Not waiting 8 weeks as the Doctor wants.
It's not recommended to get bloods after only four weeks, because they will not tell you the full story. Far more sensible to wait the full six weeks. Being impatient never works with thyroid. More haste less speed, as they say. Trying to take short cuts can leave you right back at square one.
the difference between tsh on the 1/7/20 and 2/7/20 seems too big to be correct. TSH does drop throughout the day, but i'd be surprised if it moved by that much , so even if the 2.82 was taken late afternoon and the 5.56 was taken early morning , something seems curious here.
Mmm, i'd make sure Dr is aware of this inconsistency, Good to bear in mind if they start trying to use TSH alone as the guide to dose.
I thought the drop from the 5's to a 2/3 in April /May was interesting too. But that could be explained by Hormone levels fluctuating due to thyroid struggling.
But i can't find a logical reason for a change this big in 24 hrs , when they were both early morning tests. I guess you'll have to see what the next one is. Patterns and trends are much better than results in isolation to see what's really going on.
... you picked up the similar blip a couple of Months ago. Yes, very strange but good to be aware of these inconsistencies... & as you say, a tool to be used if TSH is looked at by the Dr for sole decision making.
It's one of the best examples i've seen of why not to use TSH to dose by. They test things so infrequently , and under such uncontrolled circumstances, and then just for laughs do them using such a vastly different regime of testing machines, and then just to make the whole comedy of errors into a pantomime, they adjust the machine manufactures ranges with a 'local' component, which is arrived at using some sort of tomfoolery that nobody can see any records of.........
It's not how i was taught science at school !
I personally reckon, if we could all do more frequent tests under properly controlled circumstances, a lot of the theory of how to dose thyroid hormones would have to be thrown in the bin. And medicine would have to accept that they have no idea what or why or how thyroid systems work, even without antibodies joining in the fun.
I never could of imagined this situation a few months ago... it's been a real eye opener as to how little some Doctors know and how little some actually appear to care.
The first specialist Endo I saw here in Thailand (after being diagnosed by a clinic GP with Hashimoto's) told me to wait until my TSH reached 10+ and no need to bother with any special diet or supplements.
Having said that, thankfully being locked down in Thailand, I have been able to get the diagnosis. Having had what appears to be a Hashimoto's flare in the UK during Dec/Jan... I was told that I had chronic anxiety & depression by my UK GP.
I doubt I would of been diagnosed even by now, had I been in the UK over the recent Covid Months.
just noticed ... we have much in common . Also 54 , with a dodgy sacroilliac and right knee.... (although i don't know if you're allowed to have 'housemaids knee ' being male, maybe you have a different cause)
a) FT3 - yes you're right. I've checked and the first FT3 column is TT3 (will delete that column & avoid that test). The other columns represent different labs/ranges.
b) Low Dose & patience - got it.
I was considering piling on the T4 Levo but that would be dangerous. I will wait for another 5 weeks and get a full Thyroid panel with Vit D, B12, Ferritin & Folate
Certainly feeling the less hormone than before. I understand that my Levo T4 is not simply 'topping up'... and actually I may feel a little more lousy for a few weeks.
c) Vitamin D - yes supplementing 5,000 Vit. D3 per day first month and 2,000 the past Month. I will retest in 5 weeks with the rest.
4) Cortisol - Early morning Cortisol has been a steady 16.50-75 from end of April to a few days ago (R: 4.3-22.4 early morning).
5) Pituitary - I have mentioned Pituitary to the Dr's a few times. I will persist. A pituitary MRI where I currently are in Thailand is only £200. The Dr originally dismissed further investigation due to an OK Prolactin 10.27 (mid May). This has now moved above range last week at 21.70 (R: 4.04-15.20).
My gut feel is I have an issue here until checked out... with my stabbing head & Low Pituitary hormones.. FSH, LH, GH & high Prolactin now.
6) No one has suggested Central Hypo or Secondary Hypo. I hope with more data going forward - these can be rules in/out.
No - my TSH has never been above 5.5 to my knowledge.
7) Timescale - I'll wait another 5 weeks and get a full panel done (if i'm feeling ok then, I'll wait another 2 weeks to give 8 weeks Levo at 50 mcg).
Yes - I need to be more patient greygoose for sure.
Ohh lastly... Ferritin - just got a blood test back from this morning. Now down to 30 ng/ml (R: 15-200). Was 95 on 12/5, then 58 22/6 then 40 2/7 & now 30 today.
I will up the afternoon Ferritin bovine spleen with Orange Juice from 10mg to 20mg for the next two weeks and retest (20mg = 120% DV).
If you can get a vitamin profile sooner than 5 weeks I would recommend it, as if you need to supplement you can get a 4 week headstart and will most likely feel massively better with optimal levels of ferritin, vitamin D, B12 and folate.
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my latest bloods from my doc.. please take a look...
Vit b12 advice please
any one like me??
Weaning off Levo help please + test results
