Hello lovely people, I've just had some blood test results back and as I'm not seeing my endo again for another 2-3 months I wondered if anyone could shed any light on them?
I'm currently on 125mg of levothyroxine and 6mg of Cytomel. The Cytomel was lowered from 12mg by my endo six weeks ago, the endo said in a bid to raise my TSH levels, but they haven't shifted at all (every NHS endo I've ever seen has tried to get me to stop taking T3). My levels have been 0.01 for the past six years or so.
I'm 45 and I was diagnosed with an underachieve thyroid in my early 20s, and Hashimoto's in my late 30s. I've felt unwell for years, but it's been so bad for the past year and a half I can only work around half the amount I used to (which is worrying when you're single and self-employed!). Any advice would be much appreciated x
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Jojozo
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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)
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
What vitamin supplements do you currently take?
When were vitamin D, folate, B12 and ferritin last tested?
Do you always get same brand of Levothyroxine (and T3)
Are you on strictly gluten free diet?
Taking any dose of T3 will almost always suppress TSH, even if not on high enough dose
Thanks for your reply. Yes, I always do my tests like that (as a result of this group!) and I've been on the same Levothyroxine and Cytomel for years now. I take a wide range of supplements (although I stopped vitamin D and B12 Because my levels went through the roof). I'm not strictly gluten free but I am aware that I need to be, so that's going to be my next step.
By Vitamin D "through the roof" did you mean higher than 150 ng/mL? You might find this interesting. It suggests how much Vitamin D you need to take to achieve various blood levels. vitamindcouncil.org/i-teste...
I can't remember the results now, but my surgery phoned me and told me my levels was way too high and told me to stop taking the supplements. That was at the beginning of the year so I haven't been taking it since then. It was the same with B12 a few years ago. Maybe the supplements I get are super strong or something!
What time of day was your blood taken? If the blood was taken around 9am then your cortisol result is on the low side,cortisol varies throughout the day being at it's highest level first thing in the morning, cortisol should be nearer 500nmol/Ls at this time of day which yours isn't. You need to have further testing done in the form of a Synacthen Test (SST). Sadly many Endo's don't understand pituitary/adrenal issues so hopefully yours does. If they do a SST then they need to take an ACTH blood test at the start of the test as this shows if it is a pituitary issue, the blood needs to go on ice straightaway.
Thanks so much. I'm hopefully being referred back to the endo to look into my cortisol readings further. The endo initially tried to say it could be down to me taking too much T3, but reducing it hasn't made much difference. This blood test was done at 9am on the dot and my previous ones were 232 and 141. They're certainly not disastrous, but it could explain some of the odd symptoms I get.
Your cortisol levels need checking out, the fact that they were on the lower side & have now increased is suspicious. Do you have periods of where you feel really well & then periods of feeling unwell? There is a condition called cyclical Cushing's which could account for your fluctuating cortisol levels. Unfortunately many Endo's don't have a lot of experience with pituitary/adrenal issues, so it's important to find one that does. Where do you see your Endo?
That’s really interesting, thank you. Yes, I am so up and down. Some days/weeks I feel ‘normal’ and other times I feel nauseous, anxious, fatigued, achey, feverish, my throat swells up and I get pelvic pain and dizziness/confusion. A bad flare up can last a couple of weeks (weirdly it often starts around four days into my period) and then goes again. I’m 45 and when I was tested last year I had very low oestrogen, fairly low testosterone but normal progesterone levels. I started on oestrogen only HRT earlier this year with a plan to add in progesterone after a few months, but I had to come off everything six weeks ago due to having the cortisol test, because as you probably already know it elevates your cortisol levels. Even though I was on a high dose of oestrogen it didn’t make much difference to how I felt, so I don’t think peri-menopause is to blame for all of this. I go to see an endo at Sussex County but it’s a bit of a lottery. One guy there is so bad I signed myself of his clinic several years ago. I ended up seeing him by default again this time around and when I told him I was on HRT he shrugged and said, “Don’t worry about it,” and sent me for a cortisol test the following day, which came back borderline. When his boss found out I’d had the test while taking HRT he was furious. It’s such a waste of money and resources. My GP also suspects I may have ulcerative colitis. It’s so confusing. I’d just like a diagnosis, some medication and be able to lead a normalish life!
Is the Royal Sussex County at Brighton? Dr C <doctor name redacted> is a good one to see there, she;s also on the medical committee for the Pituitary Foundation. You certainly have some of the symptoms of cyclical Cushing's, sadly it's very hard to diagnose. Have you put on weight, or gain & then lose it when at times?
My weight has always fluctuated and I've had to do strict diets at times to keep it under control. I've everything from a size 8 to a size 16, but I've had terrible nausea for the past year and a half so I have lost weight recently.
I don't think I've ever had high cortisol results though. They've been low for several years but as I had the tests done privately my GP didn't see them, and I didn't think much of it at the time as I wasn't educated about it. The first cortisol test an NHS endo did two years ago was 212 but was marked as normal.
The doctor name has been redacted to conform to guidelines:
27. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only.
Firstly, you need to find a new doc (can be a GP specialising in thyroid & adrenals) but the first question you must ask is, does he support T3. If not, move along, you'll get nothing but frustration.
The thing about endos is they all think they can figure you out by lab values. It just ain't so, and every body's different.
Secondly, you need to buy all three of Paul Robinson's excellent books, Recovering with T3, The CT3M Handbook, and The Thyroid Patients' Manual. All are on amazon. They were what turned the corner for me. He also has a great blog: recoveringwitht3.com.
Third, you need to order a cortisol saliva test which takes four measures instead of only 8am serum cortisol so you can see what's going on in the diurnal cycle. Cortisol can be raised where necessary solely by a circadian dose of T3.
The T3 needs to get to the tissues to affect the entire hormonal balance. That can'y be measured by lab testing. You need to start recording vital signs--temps, BP, heart rate. Then do some daily average temps. Buy a cheap digital BP cuff & a mercury thermometer, not digital.
You need to be recording your symptoms every day. The right doc will take these into account. You might want to try Dr. Sarah Myhill in Wales to see if you can get a booking. Her excellent information here: drmyhill.co.uk.
I highly recommend reading over this website rt3-adrenals.org. Take everything with a grain of salt & an open mind as you read each article. You need to be way better informed than your doc because you're the one who's suffering not he!
Lastly, you should join the RT3-Adrenals group with one goal in mind. Their moderator, Ann Steck, is superb at reading lab results &, I'm sure, will have more to suggest to you. Join groups.io/g/RT3-Adrenals/ so you can write her to ask how to join: RT3-Adrenals@Groups.io & ann.steck@yahoo.com. (The group just changed platforms so I'm not sure how yet.)
Jojozo, I've gone through three major episodes of thyroid hell since 1984. You can fix this!
Thank you so much, this is all so helpful. I desperately want to feel well and live a normal life again, and it looks like in order to do that I'm going to take things more into my own hands and educate myself as much as possible. Sadly Dr Sarah Myhill isn't taking on new patients at the moment but I will keep an eye out in case she is.
I'm so glad you've managed to find a way to manage your symptoms. Fingers crossed I'll be writing the same on here one day soon! x
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Help needed please latest blood results
Please can anyone help with my latest blood results
Please can I have help with my test results?
Help with my results please
