Over the last year I’ve had severe problems with my thyroid and cortisol blood results. I’ve had 2 synacthen tests and both showed not to have Addison’s.
A month ago I was finally prescribed T3 medication just 5mcg twice a day to start, as my T3 results are very low. 3.9 (3.7-6.0) Along with 75mcg Levothyroxine. I have been on a 75 mcg dose of Levothyroxine for a few years.
On taking the T3 I felt almost immediately better. It is fantastic. However, I’ve developed pains in my back just at the point of my adrenals. This pain has not gone away and I feel it constantly.
Has anyone else had this symptom when starting T3 please.
My vitamins are all in the optimal range now.
Thank you
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McPammy
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I think I'd have new blood test first as 75mcg levo is quite a low dose. Of course with the addition of 10mcg of T3 (around 30mcg of levo in its effect) you'd think you would have had some improvement.
The aim of T3 is to saturate all of our T3 receptor cells and then its activity lasts between one to three days.
As T4 is the inactive hormone (i.e. it has to convert to T3) do you know what your T3 is - better still do you know your FT3 and FT4? I'll give a link for info:-
I only know that my T3 was 3.9 (3.7-6.0) when I started the T3 just over 3 weeks ago. I’m due for another T3 test end of next week. Along with T4, TSH and cortisol tests.
Just a thought - maybe your adrenals need supporting ?
I've found relief of " that lower back pain " within a month or so after supplementing with adrenal glandular. I think the longer you've been struggling with thyroid issues, the more likely it is that your adrenals have been " picking up the slack " and trying to compensate.
I think chemical T3 is much stronger than the T3 proportion of NDT. and needs a stronger support system within the whole body.
I'm with Graves Disease, post RAI 2005, now trying NDT and find this supplement " softer ".
On T3 + T4 I felt I was in the fast lane whereas on NDT I'm in a slower lane - does that make any sense ?
There is also secondary adrenal insufficiency 'SAI'. This is tested for by measuring ACTH at the same time as doing the SST. It seems that the NHS is no longer testing ACTH at the same time.
Addison's is to do with the adrenal glands not providing enough cortisol and is also know as PAI (primary adrenal insufficiency). Secondary is to do with the pituitary gland not sending the correct signals, and this can also affect the thyroid as well as the adrenals. (My level of understanding is just at the start...it has taken years to get to grips with the thyroid, let alone all the other hormones and the pituitary, adrenal axis!)
I take T3 only, and that can have an effect on cortisol, but not at the levels you are taking (as I understand it).
If you want to find out more about T3 and its effect on cortisol, Paul Robinson's books are great and available through Amazon.
It is possible to get private ACTH blood tests, but I have not done so yet. (I 'passed' my SST as well, but didn't stim brilliantly, and have the permatan and other symptoms.)
Another suggestion, which I hope you won't take offence at: You say you are feeling brilliant now that you are on T3, and I wonder whether you are now doing more than you have done in a long while, and you may have back ache (perhaps from poor posture, or repetitive movements)?
I am currently suffering with spasms in my lower back, causing pain and making me find it difficult to stand and walk...Do not underestimate what I mean by back ache!
I was tested for acth it was 0.5 the range is 2-11. So I was very low. At the same time my cortisol was 68 range is 155-607. They said I had no adrenal issue!!!!! How can that be I asked. They didn’t answer. I have had the worst year of my life.
I’m going back to Drs next week to see if they can help with further tests.
T3 mind you has been quite remarkable. I have been busier. It’s nit back ache. It’s definitely my adrenals or kidneys as pain is in those spots. Mainly worse in the mornings for some reason.
Thank you so much for your help and support it’s really appreciated
Hi Pam, have you tried the CT3M method for your adrenals? Paul Robinson got his adrenals working normally ( after having very low cortisol) with this method. You can try taking your morning T3 1,5 h before waking up. If that doesn't work, you try 2h before or 3 h and so on. The adrenals need thyroid hormone and the cortisol production starts in the night a few h before we wake up and that is the reason this works so well for many people.
Hi. No I’m not taking anything for adrenals. If I do take thyroxine at any pint in the morning it makes it so much worse. I’ve tried taking Levothyroxine after noon. (T3 I think I’m better with). Once the adrenal high is lowering. This seems to work better for me. I just feel that Levothyroxine cuts through my cortisol reducing it or not letting it work properly in the morning time.
It’s hard to balance and try and get normal. Sometimes I crash at noon. I have to stop and lay down. After 2 hours I’m recovered. Shattered but better.
Thank you you are very kind indeed for taking time to help me
I just take T3 in the morning. Then again in afternoon. I take T4 about 12.30 daily. I have a weakness period between 11 and 1pm each day. Recovery is getting better weekly. But I still get pains in my back where the adrenals sit.
I did point this out to my Endocrinologist by email with my 9am cortisol results before I started T3. Which was 150, 170 and 180 range is 155-607. I thought these recent 9am’s seemed too low. However Endocrinologist didn’t get back to me. I started T3 3.5 weeks ago. I do feels I have good energy and generally better but was concerned about pain in back by adrenals and exhaustion between 11am and 1pm. I’ll get cortisol checked again next week and contact my Endocrinologist. I have a spare blood test form and can go straight to hospital blood clinic to get it done. It’ll be interesting to see if it has gone lower. I do believe my thyroid is functioning better with the T3.
Thank you so much for your time in replying and support
What time did they do the SST? It has to be at 8-9am (although readings that low should be an immediate Addison's diagnosis!).
There is a facebook site called 'UK Addisons Disease Info & Support Group'. They don't know much about thyroid, but you might get some help on adrenal insufficiency.
I can't believe that with readings like that you didn't get a diagnosis!
You need to be armed with documents to make your GP listen...It is a rare disorder and GPs are trained to look for common complaints on the whole.
I wish you lots of luck with getting the help you need.
Hi. They did do the first synacthen test at 9am. But what they also did was give me 100ml of Hydrocortisone by drip at 1am 8 hrs before. Apparently you should not have Hydrocortisone for 48hrs before a synacthen test!! The Endocrinologist also said the results was borderline Addison’s!!! So I got a 2nd synacthen test a few weeks later as I was in a state and couldn’t even sit up in a chair I had to lay flat for weeks. I thought I was going to die without being too dramatic. They gave me Hydrocortisone medication which just made me sleep all day long. When I went for 2nd synacthen test they didn’t tell me to abstain from this medication. And didn’t do it until noon I passed. I believe both tests are suspect and I need a 3rd test. I’ve had loads of low cortisol results after collapsing at home. 68,69,90,112,140,150. I don’t know why they aren’t putting these together and seeing I have a real issue. I went on NDT for 5 months and my cortisol got better. Probably due to low T4 in NDT. Then I was informed I need to stop NDT and go back to Levothyroxine where all my problems returned. Now T3 has been added and my back has pain just at the point of adrenals. I’m no Dr but it does seem that Levothyroxine is causing a big problem with my adrenals. Why I’m not sure. I’m going round in circles. The T3 has helped me so much I’m like my old self. It’s just pain in my back that’s new. I feel that I need more T3 and less T4.
I just want to be normal again.
I hope you are ok and enjoying the weather this lovely Easter weekend. It does lift your spirits and helps with vitamin D.
Thank you for taking time to comment and be lovely and supportive.
Thank you!! I read that. Looks like I should have been admitted to hospital many times. I was admitted twice but ended up on the cardio wards and they were looking for heart issues. They did loads of heart tests and found no issues. I’ve been saying to them since last March that I think I have adrenal issues. It’s still not sorted.
I’m convinced it’s Levothyroxine doing something.
My sister who’s had thyroid cancer has had 9am cortisol of 100 recently passed her synacthen test too. She has to take high doses of Levothyroxine her T4 is over the range. This is to suppress her TSH to zero to stop cancer return. They’ve never checked her T3 and won’t. The same hospital that I am under sent her away and said he had depression. She changed hospital and within 2 weeks found a lump, did a fine needle aspiration and had her thyroid removed due to cancer. Chester hospital Endocrinologist are awful.
Sorry rant over.
Thanks for this link. I will send to my sister also.
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