hi
can anyone advise my tsh level has dropped drastically over the past 6 months from 1.57 to 1.17 now sitting at 0.8 my gp is saying this is normal but I feel really unwell not currently on any medication gp thought menopause but hrt isn’t helping any advice appreciated
Welcome aboard
That is actually a very small fluctuation which can be just the difference in blood test timings as TSH has a circadian rhythm... has your GP checked your folate, ferritin, B12 and Vit D levels?
If you suspect your thyroid levels aren't right then you'd need to get a private test to check fT3 & 4 levels
thank you for your prompt reply I have booked a private consultant this coming week to hopefully get further tests as I’m having symptoms of erratic heart rate that changes by the second going from 72 jumping to 120 then dropping very quickly also have vision issues sore tongue hot and cold feelings nervousness and very weak and tired and headaches brain fog
Certainly would benefit from running a full panel to see if you are deficient in the basics, which can make you feel horrendous, your symptoms would suggest these aren't optimal... also look into your sex hormone levels to see if your HRT needs tweaking to find a better balance
If you'd like to post results when you get them we will happily give you some feedback 🤗
Thank you fingers crossed all goes well at my private consultation much appreciate your support
Hopefully a few supplements and tweaks you'll be feeling like a whole new you, are you seeing a Functional Dr or private GP?
Thanks I’m see a private consultant as my gp has lost interest I’ve told him I know my own body and something doesn’t feel right or balanced sone days I’m struggling to function I would not hesitate to see a functional medicine doctor but can’t find one in my area
Yep, I'm afraid GP's aren't bothered about optimising health or wellbeing 😬 but in general medics aren't very hot on the importance of optimising vit's and min's before throwing drugs at us, hopefully you have found a good one🤞
Thank you there are too keen to blame anxiety and throw meds at people then getting to the bottom of the issue
If anxiety is a major symptom I'd suggest you are likely low in magnesium, B vits, Vit D, iron, zinc, selenium also with your surging heart rate suggests stressed adrenals which run on Vit C and salt
Menopause is such a fun time but it also means you can reset and gain control of hormone levels 🙃 give yourself some love and care, things get a whole lot better 🤗
Thank you fingers crossed things improve but seems my symptoms are getting worse no matter any change in hrt and it hasn’t helped I was admitted to hodpital last year with hypercalcemia but no further investigations done just given short term meds
That suggests pituitary/ parathyroids which deal with calcium levels? Have you got any blood test results they surely must have run some?
They ran them in the hospital but I never saw the results they just treated me with the meds I’ve checked my gp bloods and my calcium levels are on the high end of the scale recently but not over the consultant I’m seeing is an endocrinologist so I’m hoping he has some answers
Worth running your own tests before you see him and sending him a copy as TSH isn't much to go on especially now we know your pituitary might be a little suspect and is involved in the feedback loop
I’m going on Wednesday so wouldn’t have time to run my own tests I don’t think not sure how unwell these adrenal issues can make you feel but I feel utter rubbish there’s got to be an issue somewhere
I'd suggest rearranging your appointment as he won't be able to tell you much without them and he'll charge you extra if he organises them, you can get pretty quick results from Randox, Medichecks etc..... all of the things mentioned above have the ability to make you feel 30 years older 🫤
Thank you I will look at random or medichecks and see if i can order is there a specific test I need to order thank you
You need vitamin levels and BOTH TPO And TG antibodies and ideally TSI or Trab for Graves’ disease
So that’s only on offer via Medichecks, with private blood draw necessary for Trab antibodies test at clinic near you or nurse to your home
Worth checking locations of Randox as it would need to be 'in clinic' for a decent test like Discovery which has full sex hormone panel.... Medichecks often have an arrangement with NHS clinic to allow blood draws or find your own phlebotomist (extra cost) something like their Advanced Well Woman though it doesn't cover progesterone or testosterone?? I've used their Ultimate Performance BT 😅 but still no progesterone!
These both give a good look at the overall picture... there is a company called Lola who arrange home visits which I think some have used and if you are near a city you might find a walk in clinic, I think there are some in the South East?
The link (in blue) in my first reply will tell you about other companies and discounts
Thank you will take a look I’m in the north east in a small town away from everything but will try to find somewhere
Hmm... Newcastle upon Tyne or Leeds for Randox
Just looking at the advanced Lola one now looks pretty good and they do home testing
Could be ideal if they cover your area, wants to be a pre 9am test ideally fasted, water only
Thank you may have to do a home one as some days I’m too unwell to leave the house which makes me think something isn’t balanced in my body
Ah just check Lola doesn’t finer my area
I'd suggest this one then as it is an NHS lab... monitormyhealth.org.uk/full...
Save 10% with THYROIDUK10
Thank you I will take a look I’m trying to find one that covers everything
This is about as good as they get with home testing, you need a venous draw to do more thorough testing as it needs 3-4 vials of fresh blood
Thanks I’m just annoyed my gp isn’t listening I’ve been reading different articles and having hypercalcemia can also be caused by parathyroid issues my eyes are so blurry everyday each morning I never know how I’m going to feel
Absolutely right, sorry yes I should have added parathyroid along with pituitary
I’m so annoyed the hospital didn’t review to find the cause of my hypercalcemia some days I can’t get out of bed for head pressure and weakness today isn’t too bad but have read levels can change daily with parathyroid issues
I agree, you would have thought they would have at least given you a scan
Presumably they did a PTH test?
They didnt do a pht test they did a cortisol and ANA said they were ok and that was all they tested I ended up in a and e last Friday as was really unwell did basic bloods all ok they said referral to endocrinologist but that’s an 18 month wait on the nhs so that’s why I chose to go private I didn’t realise that it could be potentially parathyroid until I’ve just been reading up and read some people are ok one day and not the next which seems to happen to me
I did a Randox female hormones panel at home last year. I wouldnt necessarily recommend them as I found the whole faff of getting results extremely frustrating, but it covered all of them, including testosterone.
I've always found them rather good and cheap, they have given their results pages a makeover so hopefully upgrading their software, in clinic they are very good
You need to get thyroid antibodies tested as well
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
HYPERTHYROID - also called Graves’ disease should be confirmed by testing TSI or Trab antibodies
Also both TPO and TG thyroid antibodies tested for autoimmune HYPOTHYROID, also called Hashimoto’s
Hashimoto’s frequently starts with transient hyperthyroid type symptoms and results before becoming increasingly hypo
Very important to test vitamin D, folate, ferritin and B12 as well
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease - hyper or hypo
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
What vitamin supplements are you taking …..if any
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Only do private testing early Monday or Tuesday morning.
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
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
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Link about Graves’ disease
thyroiduk.org/hyperthyroid-...
Graves Disease antibodies test
medichecks.com/products/tsh...
Thank you very informative I will take this into consideration
Hi J2122 - that's roughly where I started 5 years ago and it's now sitting around 2.89. I've never had antibodies, always had frees just scraping in the bottom of range and have low cortisol and underange DHEA and testosterone. I was post meno when this started to become noticeable but I'm convinced it's connected to meno and the wildly fluctuating hormone levels. Research secondary hypothyroidism, it's where the problem lies with the pituitary or hypothalamus sending a signal and not the thyroid gland itself, the result and treatment is the same but you'll likely never have antibodies or a high TSH and will therefore be ignored by the NHS. My advice to you is test test test; get a full iron, sex hormone, thyroid hormone and vitamin test done, I'd also recommend a saliva cortisol test but one step at a time. I hate to tell you this, but if you're on the meno spectrum and have any thyroid results 'in range' the NHS and quite a few private 'specialists' will give you diagnoses such as meno, cfs, ME, depression, anxiety disorder etc etc, in short, you won't be taken seriously and you'll continue to deteriorate. I didn't think this was possible from medics but I now know different. Start testing and keep records, post on here and good luck.
Thank you Jamima I am post meno so they blamed that initially but been on hrt 8 months and no relief they then tried to blame anxiety but I told them I’m not anxious I know my own body and feel very unwell I’ve also had mri brain scan and all clear but it’s the hypercalcemia I had late last year that’s making me question what have they not found and also the drop in my tsh level over a short period of time I will keep fighting did you get sorted eventually
I see you've got a private appointment so emphasise the hypercalcemia to them. You're doing the right thing by taking it into your own hands and I note that someone mentioned parathyroid, I know nothing about that but I do know that, like you, we know when something is not working properly in our bodies, I was ticking along just fine on HRT and then wham, I wasn't, I noticed it was making me feel worse; cold and sleepy. Medics don't recognise this or if they do, they won't react because you're 'in range'. Do your own research and get further tests.
No-one ever managed to help me, one 'specialist' put me on a very high dose of NDT without titrating and it made me very ill, another 'specialist' told me I had 'excited blood', I've paid £££'s to get an answer and have now just resorted to self medicating. You know there's something wrong, hang onto that and don't be fobbed off.
And test.
Low TSH level
TSH level
TSH level 0.22
TSH - Optimal level
Tsh level high
