I've not been on for a while as I've had a mare with it all/ been told it's all in my head then had a med change (added vitamin d and kept slightly suppressed TSH) that put me back to normal. All symptoms went. Skin and hair improved. Mood lifted. Wanted to exercise.
Dr asked me to change meds 15th Feb to alternate 100 and 125mcg, where I had been on daily 125mcg.
This was approx a fortnight ago and from the 9th day I got joint pain back, then from day 13 to today I've had diarrhoea, bad headaches daily, hair fall back again and just generally feeling unwell again.
Because the Dr/Endo said there was no reason for me to feel so bad (before they added the vitamin d that has been the Gamechanger) I'm now paranoid that I'm imagining symptoms!
Is it usually to feel symptoms so soon after meds change or is it even possible so soon or is it likely in my head??
Should I persist on new dose for the three months as requested or trust my symptoms and go back to 125mcg daily where I know I feel best?
Any advice gratefully accepted
Thanks
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Dr asked me to change meds 15th Feb to alternate 100 and 125mcg, where I had been on daily 125mcg.
What was the reason for this?
Why do they have to mess about with dose when we are feeling well.
It sounds as though you would be better back on 125mcg.
As Levo has a half life of 7 days, that would be when you would start having slightly less T4 in your body, maybe you are very sensitive to meds and you have felt started to feel this change already.
How much Vit D do you take, what was your level when tested, do you take D3's important cofactors - magnesium and Vit K2-MK7?
I'd been on 125mcg since Jan 2018 but still had persistent symptoms that were hugely affecting me. They added high dose Vitamin D at the end of December and by January I felt back to normal ( ie like before being diagnosed hypo/hashi).
I told the Dr I felt back to normal since the vitamin d and that the endo had said ( before giving me vitamin d) that there was no reason via my blood tests for me to still be feeling hypo symptoms so badly and in so many ways. My blood test did however show slight vitamin d deficiency, so i suspect my symptoms were from that and i had mistakenly thought they were linked to thyroid.
I suspect the Dr, thinking the same, wondered if that meant I didn't need so much levo, as the symptoms were potentially from vitamin d rather than lack of levo. So he wanted to drop dose slightly to get me so my TSH is no longer slightly suppressed. Note that he previously wasn't overly bothered about it being slightly suppressed if it meant I felt well.
I felt different from day 9 and it's got progressively worse. Daily bad dizzy nausea headaches and just generally feeling unwell. Like I'm starting with a cold or something. My Dr did say I was probably very sensitive to Vitamin D and that's why I had so many symptoms on a slight deficiency...so maybe I'm just sensitive in general?
I have always felt like I know my body well as I've had migraines all my life. But since Endo said many of my symptoms were "probably pyschosomatic" I've been really confused about what I see/feel and what may be in my head.
I was on 5,000 Vit D for 6 weeks ( it was only slightly below what is classed as deficient- dr didn't specify amount and i'm yet to receive my copy of the tests) then they've told me to take 1000 daily, which i do and have done since mid January. Within a week of taking the vitamin d ( alongside my usual 125mcg levo) I was out jogging. Jogging!! I also was wanting to do my yoga again and actually enjoying it and - crucially- improving what I could do each time. Since my change I've had no impetus to exercise at all. I also take 100-200mg magnesium on a night as it helps with restless legs and sleep. Though since I've changed my meds to the alternating dose I've also noticed insomnia/poor sleep creeping back in.
My instinct is that the new meds arent right for me and I should go back to vit d / 125mcg levo where I knew I was good. But i'm conscious that the brain is a powerful thing and there may be something in the whole psychosomatic thing. His comments had made me doubt myself , i guess is what I'm saying. I think I'm just seeking some considered advice..?
If it was me, I'd be putting my Levo back up to 125mcg, if the doctor wasn't overly bothered about a suppressed TSH before, I can't see why he would be now. FT3 is the most important test, if that result is over range then you're overmedicated.
I think you need to retest Vit D. The Vit D Council recommends a level of 125nmol/L and the Vit D Society recommends a level between 100-150nmol/L. Once you've reached that level then you'll need a maintenance dose which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
I was severely deficient with a level of 15nmol/L, I sorted this myself and got up to 202nmol/L very quickly, now I try to keep it around 150nmol and for that I need 5,000iu D3 in the winter, a bit less in the summer.
My FT3 is optimal as per the chart that Thyroid UK quote as optimal levels
It doesn't matter what some chart says, we need it where we need it and for most of us hypo patients that's in the upper part of it's reference range, usually in the top quarter.
First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.
UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Once you get the results come back here with new post and members can advise
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Ask GP to test folate, ferritin and B12 plus both TPO and TG thyroid antibodies if they have never been tested
Or - after 6-8 weeks minimum on CONSTANT unchanging dose of Levothyroxine (wether you decide to stay on 125/100 alternate days, or return to 125mcg daily. You need to wait to test regardless)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
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Advice needed...
Can total TSH labs change without dosage change?
Today I followed the advice from you guys and went for blood work. I didnt take medication 24 hours prior to it and early in the morning
Results advice please 
