I was diagnosed 11 years ago and everything was fine until 2022 when my thyroid starting badly misbehaving.. these are my results. I can feel it when it changes but the doctors have no reason why it's happening. It's sending me loopy and putting a strain on every aspect kg my life. Any help or advice would be great.
I saw and encronolgist and she didn't know 🥲
I expect you have Autoimmune Thyroiditis - aka Hashi's. Have you ever had your antibodies tested? That should be one of the first things they test, for this very reason - i.e. fluctuating levels - but they rarely do because they don't understand the significance.
Oh no I haven't... It's a pain getting even my normal tests done but I'll see what I can do. This is driving me crazy! Thank you x
It's really crazy that when doctors see results like that they're mystified. The reaction of anyone that knows the slightest thing about thyroid would be to test antibodies. Their lack of knowledge is staggering. How dare they pretend they can treat hypos without such basic knowledge.
Apparently I had an anti body test in 2022, shes out me forward for another one but thinks its unlikely to show any change. Was sort of hoping that would be the answer
OK, but which antibody was tested, and what was the result. It's important to understand that very few doctors understand the difference between Hashi's and Graves'. You have to stay on their backs to get the correct diagnosis. You cannot just sit back thinking they know best. They don't.
Could you include the ranges for the above - to me they seem all over the place. Theoretically if you have Hashi/Ords then maybe your thyroid went into overdrive for a bit?
I might be inclined to get female sex hormones tested (including SHBG) - perimenopause stated for me at around your age (it took 11 years to complete) - I've probably been hypo for 50 years but diagnosis wasn't until 2001 and replacement started in 2006 - the delay was due to a small self delusion I had at that time 
sorry, the ranges are above.
I've started HRT ( it cant help can it ) and ill see if the doctor will give me a full female screening! Ive been doing the wee stick tests and they are all negative .
I've started HRT ( it cant help can it)
? did you mean it can't help ?
If the HRT is bio-identical and properly balanced, then I expect it would be helpful but you need to know what your levels are before taking it. If your doctor has prescribed something then (surely) blood tests are needed ?
The doctors wont do blood tests for HRT anymore, they just go by symptoms, but because my symptoms of my up and down thyroid are so similar then they suggested I start it.
Can I suggest that before continuing on something powerful that you may or may not need, you get yourself tested. Alternatively strongly request the blood tests from the NHS and remind them that taking hormone replacement when blood tests show they are not needed can have a serious adverse effect i.e. they (hormones) are not smarties. Perhaps also ask them if they'd prescribe thyroid replacement just on the basis of "symptoms"
Are you or have you been taking any other drugs that could interfere with absorption? Are you taking the same brand of levothyroxine routinely? Have you tested for celiac disease or tried gluten free foods. Just some things to think about. Also you really need a full thyroid test of TSH T4 and importantly T3. You can get this all tested privately on line through Monitor My Health. They do lots of blood tests. Might be worth paying as the NHS are notoriously poor when treating any thyroid issues.
Thank you! I've booked a call with my doctor and im going to ask for a full blood screen as well as the female hormone testing
Hi, I was tested for cealic disease a few years ago and it was negative, however I don't eat a lot of gluten foods and if I do I have gluten free. I dont always have the same brand so thats also something to consider.
I take vitamins but none of those effect thyroid and i've been taking those for years, way before 22 and the mental flare up.
I'm going to see how many tests I can get done on the NHS and then book a private endo, the one I saw on the NHS previously had no idea at all.
Hey, by any chance did you have covid? I was diagnosed 10 years ago and I was flying up until I caught covid in 2022, been on a rollercoaster since been up and down. My endo said he has seen so many people this is happening to. Thankfully he has my levels returning to normal levels but it's been worse 2 years of my life. I have hashimotos.
Were all of these tests taken at the same time of day under the same conditons? TSH varies throughout the day, also taking Levo just before a test can give a false high for FT4.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.
It looks to me like you needed a dose raise in 2023, never got it, added HRT which can change results so still need a dose raise.
To properly assess thyroid function we also need to see FT3. Suggest you get a private blood test as NHS rarely tests it.
When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Hello. You say you have just started HRT which suggests you are entering the menopause time of life. If not then ignore the rest of this!
If so then I wonder if it’s the menopause which is sending your TSH and t4 results all over the place. I haven’t found any research to support this, unfortunately, but in my case I was only diagnosed with a thyroid problem (sub clinical hyperthyroidism) when I started the menopause. Prior to that I had never had any thyroid issues that I was aware of. My TSH levels have fluctuated too.
Were your blood tests results taken at the same point in your monthly cycle each time? If not the changing levels of oestrogen may explain the fluctuations.
Apparently the pituitary cells that regulate the thyroid also contain oestrogen receptors. When oestrogen activates them they produce more TSH. (See drfionand.com/thyroid-hormo....
In menopause oestrogen levels fluctuate over the monthly cycle until they eventually settle down so it could explain the fluctuations in TSH. However I don’t have any research to back this up and there is little research about thyroid and menopause from what I can find.
Im 43 which they say is early, but because all my symptoms are thyroid or menopause they have started me on HRT as a backup I have none of the menopause symptoms regarding menstrual cycles... they are as annoying and regular as ever!
It takes a while for periods to stop. Mine got very heavy, then intermittent, then stopped. It was nice when they finally stopped.
Hope the HRT helps and you get sorted out.
I suffered with ups and downs for 40 years. I didn't know they were connected to my thyroid and thought I was mentally ill until I saw a Chinese acupuncturist who enlightened me that all my symptoms were coming from my thyroid. Then I saw a chiropractor who thoroughly tested me and informed me I had Hashimotos and underconversion. I have never understood why the mainstream medical community knows so little about thyoid disease. They only test TSH and treat according to that and not very well! I am now 30 years post diagnosis of hypo and finally stable. I think only because there have been enough autoimmune attacks on my thyroid to finally kill it and I'm now only getting hormone from what I am taking. Hashimotos was the mystery attacker that essentially ruined 40 years of my life with its ups and downs.
Up and down…
TSH going up and down
Up and down energy levels,
Blood test results, TSH up and down
Temperature up and down
