I’ve felt unwell ever since starting 50mcg Levothyroxine in May 2018, stopped it and started T3 only 20mcg a day and felt very depressed after a short time. Started Levo again February 2022 and after getting to 50mcg daily after 9 months became much worse again with anxiety and depression. Endo added 5mcg T3 last September which has just been increased to 10mcg a day in addition to 50mcg Levothyroxine, no further blood tests and she says next appointment will be in 12 months time. Endo maintains my numbers are fine and it’s not my thyroid making me feel so ill. I still feel so bad, can’t get up in the morning until 11.00am, sleep every afternoon and take tablets to sleep at night. Feel very depressed and anxious and no interest in doing anything. GP has just increased my anti depressant dosage. My September results on 50mcg Levo and 5mcg T3 are. I followed the protocol for the blood test and left 12 hours from taking T3 and 24hrs T4, fasted. I weigh 10 stone.
TSH 0.48 (0.27 to 4.20)
T4 13.3 (12.0 to 22)
T3 4.5 (3.1 to 6.8)
I take Better You 2,000 D3 with K2 daily. B complex and have just started taking CBD oil to see if it helps with the anxiety.
I would really appreciate any advice.
Thank you
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I'm not surprised you don't feel good, you're very under-medicated.
Your FT4 is only 13% through the range, you probably need it a lot higher than that. And your FT3 isn't much better. Most hypos need that about 75% through the range to feel well.
And you were certainly under-medicated when you were T3 only, and only taking 20 mcg T3! That's a rediculously low dose for someone on T3 mono-therapy. I'm sure you would need at least 50 mcg, possibly more. So, that's why you became depressed, not because you were suffering from anti-depressant deficiency! But doctors just don't understand how it all works.
I, too, had difficulty tolerating levo - T4. I'm now on T3 mono-therapy and take 75 mcg T3 a day. That's quite a high dose but that's what I need to saturate the T3 receptors and get some into the cells. Every time I try and reintroduce levo, I feel worse. So, I'm not going to try anymore.
Could be you're the same, Or that you just need a high dose of T3. And you should be given the freedom to experiment until you find the right dose for you. But doctors are so terrified of T3 that they feel they have to restrict you. Which is why I cut doctors out and now self-treat. Not suggesting you do that, but you do need an increase in dose - most people would say increase the levo first, but as levo makes you feel bad, I would say increase the T3 first and see how you feel. It's just a matter of convincing your doctors, and that won't be easy, I'm afraid. But that's were the problem lies: under-medication.
Hi greygoose, thank you for replying, I was hoping you would provide your advice. I've spent years reading the forum and you always provide such helpful responses. Up until now I have always listened to the Endocrinologist and believed what I have been told which has continually been that my numbers are fine and that my feeling so bad is nothing to do with my thyroid. I've now had enough of feeling so bad and think it is time to take things into my own hands. I do get T3 on the NHS but doubt my doctor will go against the Endo and increase my dosage. I am aware it is possible to obtain T3 from Roseway but do you need a prescription. I'm happy to go to a private Endocrinologist if need be. I think your suggestion of increasing the T3 is the best option to go with, thank you. The thing that irritates me is that prior to diagnosis all I had was tiredness whereas now I am in a much worst state.
I've never had any experience with Roseway, because I don't live in the UK. But I think the way it works is that they provide the prescription. But I'm not sure. Might be a good idea to write a new post asking about Roseway and how it works. It might suit you, or you might be better off asking for links to people's trusted sites where they buy T3 without a prescription. Probably depends how much you are ultimately going to need.
There is some uncertainty regarding Roseway atm. Until recently several members were getting their T3 meds prescribed and supplied via their pharmacist prescriber. But we had a post from someone recently ( sorry cant remember who it was) who said Roseway said they now needed a prescription from doctor or Endo.
I dont know if it was just for that particular patient or if this is a change they have implemented for all T3 patients.
Reading between the lines if this is tightening up of the prescribing rules its possible someone has complained or a professional body has " leaned" on them. It might be worth posting for feedback about Roseway and their current position or contact them directly.
Adding T3 significantly reduces TSH making it much harder to get increase in Levo
50mcg Levo is only standard STARTER dose
Why was dose Levo not increased BEFORE adding T3
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on levothyroxine
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Request 25mcg dose increase in Levo to 75mcg
Also need vitamin D, folate, ferritin and B12 tested
Hi SlowDragon, thank you for replying. I weigh 10 stone. The highest Levothyroxine I've been on is 50mcg/75mcg alternate days for 12 weeks. The endo reduced the Levo to 50mcg daily when increasing T3 to 10 mcg per day. I've only been on this dose for one week so far.
My vitamins haven't been tested for a while but I've been prescribed folic acid twice as my readings were so low. I now take a B complex daily and 2,000 Vitamin D and K2.
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
The results I posted were on 50/75 mcg alternate days., My T3 had always been very low in range. Should I now return to 50/75? Endo reduced to 50 when increasing T3 to 10mcg daily. This is only a week ago. My problems started 2 years ago when taking 50mcg Levo only., Have been very ill since then.
My problems started 2 years ago when taking 50mcg Levo only., Have been very ill since then.
This is because Levo doesn’t top up your own thyroid output …..it replaces it
Once we start taking levothyroxine, TSH reduces (message from pituitary telling thyroid to make thyroid hormones) …..so unless taking high enough replacement dose levothyroxine you actually become MORE hypothyroid
Many medics (even endocrinologists) don’t seem to grasp this ….even though guidelines are clear
The results I posted were on 50/75 mcg alternate days.,
I don’t think they are
You said
My September results on 50mcg Levo and 5mcg T3 are. I followed the protocol for the blood test and left 12 hours from taking T3 and 24hrs T4, fasted. I weigh 10 stone.
TSH 0.48 (0.27 to 4.20)
FT4: 13.3 pmol/l (Range 12 - 22)
Ft4 only 13.00% through range
FT3: 4.5 pmol/l (Range 3.1 - 6.8)
Ft4 only 37.84% through range
these results appear to be from 50mcg and 5mcg T3
can you add your results from when on ONLY Levo at 50mcg/75mcg alternate days
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