Hello all, 8 weeks ago I started taking 25mcg of Levothyroxine, TEVA brand. (I am already ACTH deficient and taking hydrocortisone x3 daily and now endo suspects I am becoming TSH deficient - T4 level has been steadily declining, and increasingly symptomatic of hypo). Blood results before the trial were FT3 3.9 (3.5-6.5), FT4 10.8 (10-18.7) and TSH 0.53 (0.55-4.75).
I had a terrible reaction to taking TEVA and ended up having panic attacks after 2 1/2 weeks. I then switched on to Wockhardt and felt better emotionally almost immediately, but it took me a good couple of weeks to get over the side effects and extra exhaustion. I then had blood tests 7 weeks after starting the whole trial, these are the results: FT3 4.5 (3.5-6.5), FT4 12.6 (10-18.7) and TSH 0.28 (0.55-4.75).
The plan was to do a trial of 25mcg Levo, see how I felt, look at bloods and then either stick, raise to 50mcg or stop. It's hard to say if it has made me feel better as not only did I have a terrible start on the TEVA, but I have then had a viral throat/chest for a couple of weeks, but overall, probably better I think! After the recent blood tests I spoke to an endocrinologist (not my normal as she was away), and she said that although the uplift was fairly small, and still towards the bottom of the range, my TSH was obviously being suppressed so she wouldn't really want to put me up to 50mcg. She suggested I should stay on 25mcg until my next appointment in mid-Jan, especially given the shaky start. I was then phoned by another endo, (who didn't realise that the other Dr had called the day before!), and before I could say I had already spoken to someone, she said she thought I should go up to 50mcg as I was still pretty low. I was confused by their differing thoughts, and so said I'd stick on 25mcg until my next appointment.
I was wondering if any of you lovely people have an opinion on this? Earlier in the year I saw an endocrinologist privately, who was pretty useless, but one thing she said has stuck by me, which was that when you have Pituitary issues, you ignore the TSH results, and just look at the T3 and T4. I should also say that while my T3/T4 has been on the decline over the past couple of years, so has my TSH.
Sorry for the essay! I hope all the detail is at least useful! I'd really appreciate any thoughts and opinions.
Written by
luckyed
To view profiles and participate in discussions please or .
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
Do you think the TSH suppression is a factor worth considering in the dosage? I mean, if my TSH is not doing the job well enough anyway, does it matter if it is further suppressed?!
No, it doesn't. That endo that told you to stick with 25 mcg due to the low TSH obviously either didn't know you had Central Hypo, or doesn't understand how it works - or doesn't work, as the case may be.
If your pituitary isn't putting out enough TSH to stimulate your thyroid to make more hormone, as yours obviously wasn't, then the TSH reading should be ignored. TSH should never be used for dosing, anyway. It's the FT3 the most important number. And it's not that they TSH isn't doing its job, it's that there isn't enough of it. So, just ignore the TSH and increase your dose. You should have been started on 50 mcg in the first place, anyway.
Thank you so much greygoose that makes complete sense to me. It's so frustrating when professionals get it wrong, as you feel you should be listening to them!
Unfortunately, when it comes to thyroid, the majority have no idea what they're talking about! They can't even agree amongst themselves what they're talking about!
Many people have low TSH on Levothyroxine, especially if, like you, it wasn't very high to start with
People who get diagnosed when TSH is very high....eg 50 or even 100...,,they aren't necessarily more hypothyroid...their pituitary is just more responsive
Unfortunately for those of us whose TSH is sluggish......it's often hard to get diagnosed or get adequate dose increases in Levothyroxine due to current incorrect medics obsession of only testing TSH, or only considering TSH
The most important results are FT3 and FT4.
Getting all four vitamins regularly tested and supplementing to bring to optimal levels can significantly help improve symptoms
Thank you, I'll get on to the vitamin testing. And try and get upped to 50mcg too 👍🏻This is all the more frustrating as they know I have pituitary issues because of my adrenal insufficiency, there's just no joined up thinking!
@SlowDragon thank you, I have only just seen your reply, I must have missed it amongst the others! I am re-reading advice as I have an endo appointment tomorrow so I want to be ready with the right questions!
I have indeed had a head MRI. Pituitary looks normal. They check my other Pituitary Function in blood tests. Apart from non-existent ACTH and low TSH, the rest is normal. I was diagnosed as isolated ACTH deficient 9 years ago, and they said it was probably an auto-immune attack on that part of my Pituitary. Since then, the question of whether I am becoming TSH deficient has arisen in the past couple of years (due to me going on about how rubbish I feel!). They eventually did a TRH test, which apparently I did respond to, but as my FT4 level was by then at its lowest of 10.8 (10-18.7), they suggested this 25mcg trial.
They have never tested the TPO or TG antibodies, so I will ask about that tomorrow.
25mcg is a tiny dose .....obviously if you have adrenal issues dose has to be started cautiously....but you will still need to slowly increase dose of Levothyroxine
You may need to change level of adrenal support to do so
Important to ALWAYS test FT3 and FT4
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood 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)
Most important results are FT3 followed by FT4
All four vitamins need to be optimal
Vitamin D, folate, ferritin and B12
Come back with new post once you get results after consultation
Some of us can have a body that when it senses we are getting medication from elsewhere can think why should I bother so rendering TSH-the messenger from the pituitary asking for more redundant but results are saying you need the increase so go with it.
That is a very low dose I started on 50mcg and then increased it to 75mcg after 6 weeks. As soon as we start taking Levothyroxine the pituitary gland senses it and stops stimulating our thyroid which makes the TSH go up. That is why you should always test the T4 and T3 to see what levels they are. Just going by the TSH is not a good indicator of how our thyroid is working. Unfortunately the NHS have decided it is and they are wrong and just because my TSH is in range doesn't mean my thyroid is working properly as I have found out over the years I have been ill.
You will feel ill while your thyroid levels are moving, I lost hair when mine was going down because I was over active. I also lost hair when I was under active. Once your levels are stable you should start to feel better ... you need to give yourself time this is not a quick fix. You also need to get your vitamin levels up. I take Vitamin D spray and my level is about a 100 which suits me but we all are different. I am just telling you what I have learned over the years by talking to other sufferers in the US and here in the UK. I am not medically trained but I did used to be a Pharmacy Assistant in the NHS many years ago and do know a little about different drugs.
The hydrocortisone is suppressing your TSH, when cortisol rises TSH goes down. I went through all this and had to raise my levo very slowly it has taken me over a year to get to 62mcg. Every time I raised my levo my TSH suppressed and I felt terrible, had palpitations and hypoglycemia my GP was having a hairy fit told me to stop the levo cause I was hyper. I ignored the GP and lowered my dose and instead raised it slow as my body couldn't handle the increased metabolism. Now everything is fine as the slow increases have also healed my adrenals it has been a slow process but I'm feeling so much better and all my levels have stabilised and my TSH is no longer suppressed. Let your body guide you, take it slow and perhaps you could wean yourself off the hydrocortisone too?
That's really interesting that cortisol suppresses TSH. This comes back to the lack of joined-up thinking by endos again! Unfortunately I will be on hydrocortisone for the rest of my days, as my pituitary doesn't make ACTH anymore :0/.
Yes, I think the key will be gradual change. Thank you for sharing your experience, so useful to build the picture.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
T3 trial from Endo
1st blood test after 25mcg trial
After a month trial of Levo new blood tests are almost identical. 
Latest blood tests
First blood test since diagnosis (4 weeks ago)
