I am a fresh face here 👋 but just looking for other people’s experiences of getting a diagnosis of hypothyroidism after my doctor throwing the possibility of it at me yesterday.
A little bit of my background - I was diagnosed with endometriosis in 2020 after struggling for 15 years getting a diagnosis or to even be believed. Any symptoms I had, I attributed to that (or anything else going on in my life eg overworking, pregnancy, anxiety). But since treatment, some symptoms are still hanging around like joint pain, extreme fatigue, muscle cramps and weakness, IBS type symptoms, wrist pain etc.
Due to a long history of being fobbed off by various medical professionals for various reasons (including someone point blank refusing to believe I had had a miscarriage in the past), having to go through this process is incredibly anxiety provoking and I would love to know what I’m coming up against from any of you? For context, I am awaiting blood tests for thyroid function and B12 levels, I have a family history of thyroid problems, hypertension and coeliac disease and a lot of my symptoms also point to fibromyalgia.
Sorry for the long post, hopefully someone gets this far!
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Carebear92
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Welcome to the forum Carebear92, we are a very friendly group & you will get lots of great advice here.
Your symptoms could all be thyroid related. I was referred to a gastroenterologist who suspended I had a thyroid condition as well as gastritis, as stomach issues are very common in thyroid patients. Anxiety was another huge symptom for me, but this greatly reduced when thyroid medication & vitamins improved. My muscle aches also reduced massively with optimal B vitamins & ferritin.
When you get the thyroid blood tests back, do share them here. Are you having antibodies checked? (This would show if you have Hashimotos). You can ask for a print out of these results from the Surgery when they are available.It’s helpful if you put the ranges in brackets (as labs vary).
You will feel much better when you get your thyroid bloods optimal. Key vitamins (ferritin, folate, Vit D as well as the Vitamin B12 you’re having tested) also need to be optimal for thyroid health, so do ask your GP to test these too.
Thank you so much for the information. I honestly am not sure what to expect from the tests, the GP was very vague and I had never considered thyroid issues in the slightest, so this is so brand new to me! I will be sure to post the results. Thanks for the information on vitamins too because I would never know this. I was not given much information at all but my anxiety is so high, it is definitely information I need!
High anxiety was one of my biggest symptoms…. GP sent me to psychotherapist with ‘health anxiety’ & I spent months trying to lesson palpitations, racing heart, restlessness etc. It was only joining this forum that made me realise that anxiety is a key thyroid symptom. My anxiety massively reduced when thyroid & key vitamin levels improved. Hang in there & keep posting!
Health anxiety feels like such an insult when you genuinely feel like hell! Anxiety has haunted me forever, but I have learned how to manage it for the majority of the time fortunately but I just know it will rear its ugly head again now 🥴
That is a very broad question. However, what I think many of us on this forum experience, is a lack of understanding by doctors (and indeed endocrinologists) about thyroid function and its effects. I have been diagnosed with high cholesterol, depression and told it was “just menopause” long before I a private endocrinologist actually listened to me.
Even with that, it has taken me two years and some challenges with both my endocrinologist and an interfering GP to navigate my way to feeling better.
What I’ve found is that, with hypothyroidism (and the same may be true of other things), I’ve had to learn about thyroid function in quite considerable detail in order to advocate for myself.
One of the most important things is to get thorough blood tests. Most medics try to judge what’s going on from looking at TSH. But TSH is not itself a hormone. And we really need also to look at the “frees”: FT4 and FT3. It’s them that indicate how well our thyroid is working. This is particularly true if you start to take Levothyroxine.
B12, D3, folate and ferritin are also important to measure as they enable good function.
Do your tests as early as you can in the morning, fasted.
Lots of us do our own private blood tests as the NHS are rarely so thorough.
Here are some details of places you can do this online.
When you have your results, you can come back to the forum and get feedback. By posting and indeed reading other people’s posts, you can learn a lot. It’s easy, at least in the beginning, to feel overwhelmed by it all and that you’re alone. The medical profession’s ignorance and general mistreatment doesn’t help. But I can assure you you’ll be understood here.
Thank you so much. This is both reassuring and immensely frustrating after having to try so hard for my endo diagnosis for the exact same reasons. But I’ve always found these forums more helpful than medics. I’m trying to load myself up with all the information I need to advocate for myself as I just don’t trust many medical professionals blindly anymore and made that clear at my appointment, so thank you for justifying that! I’m learning that the vitamin checks are just as important so thanks for the tip 🙂
Oh, I know. I don’t trust them either. I was shaking the other day just thinking about calling my (new) GP practice to ask for a simple repeat prescription. It’s like a kind of PTSD, I guess. They’ve traumatised us so much. In the event the request was dealt with straightforwardly. And then I was surprised!! 🤷🏻♀️
Oh bless you, it’s so hard isn’t it! I had an anxiety attack on the way to my appointment yesterday just thinking of having to fight for myself all over again or not be believed! I’m glad these forums exist otherwise I’d believe it was all in my head
Endometriosis and autoimmune thyroid disease can be linked
Endometriosis will tend to result in low iron/ferritin too
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
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 .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
I'm sorry you have had a 'journey' before you were diagnosed. Re your blood tests for thyroid hormones, the method is as follows:-
It is a fasting test, the earliest possible, and if someone is already hypothyroid - do not take thyroid hormone replacement before blood test but take it afterwards. This helps the TSH to be at its highest as a number of doctors do not have a clue that the TSH drops throughout the day..
Get a print-out of your results everytime you get a test and make sure the ranges are also quoted. Ranges are in brackets after the result. This is because labs use different machines therefore different ranges.
If prescribed and taking thyroid hormone replacements, do not take thyroid hormones before blood test but afterwards and blood draw should be at the earliest time possible. Also request B12, Vit D, iron, ferritin and folate to be tested - everything has to be optimal.
Okay, I wasn’t told about the test needing to be on an empty stomach and it’s at like 2pm, so I’ll just not eat after breakfast (7am), will that be enough time? Or is it worth trying to get a different appointment? I’ll be sure to get a print out, I like to see it anyway. I’ll post when I get them! Thanks for explaining this so clearly
definitely re arrange thyroid blood test.. even if you have to wait a few weeks for an early AM appointment. TSH has a daily rhythm. Highest very early am / middle of the night. falls gradually to its lowest around 1-3pm ish,, then slowly rises again
Statistically Less people get diagnosed if they take test in afternoon.
If they get a TSh result that is just within range this time they won't be allowed to test again for ...(i can't remember exactly how long) but 'months' at least, could even be a year if they are being really stubborn.
if they say "we don't have any appointments at that time , and it doesn't matter what time you take a TSH test..." . etc don't bother trying to explain to them that it does matter ..( they know better .. their computer tells them it doesn't... so that's that.)
Just say " i can only get here before 'x' o'clock due to work" ....( even if your self employed ) .. life's too short to argue with receptionists.
I'd follow tattybogle 's advice otherwise you will not get a proper result.
Some GPs are actually unaware of how the thyroid gland functions. I believe this as I had a comment from GP which was clear he had no knowledge whatsoever of how best to get a patient to or what is the actual dose that relieves all clinical symptoms. The comment he made to me made me respond 'I*m sorry doctor that is incorrect'.
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Hi , new to this site . Autoimmune thyroid !
Help please getting quite desperate
Very new to this! Is this normal? 
Feel like I'm losing my mind
