Hello, I’ve been looking for advice for some time around getting proper diagnosis on a potential thyroid condition. I’ve struggled for years now with GPS and attempts at private healthcare.
Since 2013 my blood tests have showed abnormalities related to my thyroid being under active on and off, with antibodies present. I was not made aware of this until recently by my new GP who actually gave me this information from my NHS medical records, apparently my GP never previously considered them significant enough to mention!
In the last 12 months I have felt awful, I suffer terribly with the cold all year round, I began to get chilblains all over my hands last winter which only finally subsided in June of this year. I sleep well at night but suffer from fatigue to the point where I’m barely able to stay awake past 8pm, my hair and nails are thin and brittle, I have been developing random skin cysts, suffer with muscle and joint pain frequently, bowel issues and general brain fog. That’s the short list of symptoms. I’ve had some of these symptoms dating back to around 10 years ago at least, every doctor I have seen over the years tells me it’s probably stress related, or it could just be chronic pain.
I’ve been sent for seemingly pointless scans and investigations, looking at my joints and organs (never my thyroid gland!) and everything is apparently perfect.
My bloods at the start of this year showed my TSH levels were raised, I retested a month later and they had reduced but were still raised. Last months were normal. The original GP I saw wants me to continue bloods once more this year in November to see where they are and has referred me to a rheumatologist to investigate chronic fatigue or fibromyalgia.
I spoke to a consultant around 9 years ago regarding fibromyalgia due to the unexplained pains I suffer with, they did not diagnose me with fibromyalgia and also did not find a substantial conclusion as to why I had the joint and muscle pain. Arthritis was checked and ruled out.
I have private medical which I’m trying to use to get a second medical opinion for a referral to an endocrinologist. However, that doesn’t seem likely as I’ve seen my NHS GP for thyroid related bloods so they’re trying to prevent the claim. Either way, I’m looking for advice on who I should speak to or what I could do.
I’m willing to save money until I can afford to pay outright to be seen by the right person as I don’t feel I’m getting taken seriously by anyone on the NHS. It’s also worth noting that my parents died young and most of my immediate family are also deceased so I don’t know if thyroid or other medical conditions run in my family.
Should I be asking for more specific blood tests, or a scan of my thyroid?
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EclipseMoon
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The first thing you should do is get copies of your blood test results for as far back as possible. In the UK you are legally entitled to either print-outs or on-line access - if your surgery do that - so that you can know exactly what was tested and exactly what the results were. Doctors, in general, aren't very good at testing the right things, nor at understanding the results! But we do understand them, so, post the results here, with the 'ranges', and let's have a look. Then, we will be better placed to make suggestions.
Ok so I've got my results from 2013 to now, I noticed they've not consistently tested my TSH levels at all so I don't know what they were for a number of years.
2014 - multiple bloods but none looked at my Thyroid, only one with an abnormality below:
Mean cell haemoglobin level (XE2pb) Above range 32.2 pg [27 - 32]
Early 2019 - next time my thyroid was looked at:
Serum TSH level (XaELV) 4.2 miu/L [0.3 - 5.5]
Serum TSH level Serum TSH level, (GIB698) - Normal, No biochemical evidence of primary thyroid disease. If, on T4 the TSH suggests adequate treatment. If the, patient is on antithyroid drugs or there is a suspicion, of pituitary disease further tests may be required.
Jan 2023:
TSH private blood test result 5.94 miu/L High
March 2023:
Serum TSH level (XaELV) 4.58 miu/L [0.3 - 5.5]; No biochemical evidence of primary thyroid
Serum thyroid peroxidase antibody concentration (XabCy) Above range 154 iu/mL [0.0 - 34.0]; Above high reference limit
August 2023:
My lowest result yet:
Serum TSH level (XaELV) 3.35 miu/L [0.3 - 5.5]; No biochemical evidence of primary thyroid
disease. If on T4, the TSH suggests adequate
treatment. If on antithyroid drugs or there is a
suspicion of pituitary disease, further tests may
be required.
It's worth noting that my tests were not all conducted at the same time of day, the highest results were always morning blood tests whereas the late afternoon or evening ones have come back lower.
And you've been hypo since 2013. But, because the TSH was below 10, they weren't interested.
Serum TSH level Serum TSH level, (GIB698) - Normal, No biochemical evidence of primary thyroid disease. If, on T4 the TSH suggests adequate treatment.
What a load of rot! What ignorant baboon wrote that? A TSH of 4.2 is not normal, it is hypo. A 'normal' (euthyroid) TSH is around 1. And it certainly doesn't suggest adequate treatment if on T4 because hypos usually need their TSH below 1 to feel well. So, just goes to show how much they know about it.
It's worth noting that my tests were not all conducted at the same time of day, the highest results were always morning blood tests whereas the late afternoon or evening ones have come back lower.
That is perfectly normal. TSH is highest early morning, and drop until it is at its lowest around midday. Then starts to rise again. Which is why we always suggest getting tested before 9 am.
Thanks for looking over this. My iron was low and I took supplements for that. I should have pointed out that I’m vegetarian and don’t eat any dairy aside from eggs due to how badly my gut reacts. So now I take vitamin supplements alongside trying to increase my intake of good vegetables and proteins.
I’m going to request a GP appointment to discuss the results as I can’t honestly believe I was never told previously my levels were off.
I managed to get in to see my GP today, they agreed my results over the years have not been normal but apparently guidelines changed in regards to TSH levels in 2015 which is why I was never consulted. They’ve also never tested my T4 levels, which I’m told the lab will only do if my TSH is abnormal. I’ve got a pre-9am blood test form to get done this week, when we have the results they’ll treat me if it’s abnormal. If it’s normal they’ll consult a hospital specialist for advice on whether to treat or not based on my history and clinical symptoms.
Thanks again for the help and advice. I feel like I’ve made more progress in a few days using this forum than I have in the last 10 years with my GP surgery!
Well, that's not surprising because GPs know nothing about thyroid, and we the patients know an awful lot!
Your doctor was just making excuses about not testing the FT4 because your TSH was abnormal several times, by thier definition - i.e. over the top of the range. But, he probably didn't even ask for it. Do you know what he's asked for this time?
And, quite apart from that, you have high antibodies, so that should be enough to make them do further testing. But, seems to me, they make these rules up as they go along!
Anyway, good job you're being retested. Let us know hat happens next.
Oh, and by the way, eggs are not dairy. Dairy is anything to do with milk - cheese, butter, cream, yoghurt. Eggs have nothing to do with milk.
Well yes that’s true, it hasn’t helped that I’ve never seen the same GP until this year when I’ve managed to consistently see the same one.
The urgent bloods form says to test TSH level due to elevated levels over last 10 years.
It sounded like she was ready to prescribe me medication at my request, but I asked to do the bloods once more and speak to a specialist first (if that can be done in a reasonable time frame) as I’m conscious there are side effects to the medication and want to be very certain before I take anything.
haha, yes of course silly me eggs are definitely not dairy!
I'm not sure that was a wise move on your part. You should have just let her prescribe. What she would have prescribed would have been thyroid hormone replacement, not medication in the usual sense of the word. It's levo-thyroxine - aka T4. Hormones do not have side-effects as such. And the vast majority of people don't have any problem with it - they often even get well if they're given enough of it. And, that is usually the problem, doctors keep people under-medicated due to their ignorance. Occassionally people get side-effects from the fillers in the tablet, but that problem is often solved by sourcing a different brand.
It is highly unlikely you'll get to see a 'specialist' at this point - and by specialist I suppose you mean an endocrinologist, who are - for the most part - diabetes specialist who know less about thyroid than GPs. The average endo would refuse to see you, anyway, because you're not even diagnosed. However, with a TSH over 5 you are hypo, and do need the thyroid hormone replacement. And the high antibodies say you have Hashi's, so it's only going to get worse. Do you know how Hashi's 'works'?
Now, she's still only testing the TSH, which is totally inadequate. And, as you have Hashi's, there's always the chance that it could come back well within the range - or even below range - because levels with Hashi's can jump around.
With any other medication it would be wise to double check that you really need it. But, levo is different because being hypo is different from any other illness. It's pretty obvious when you need it. And, if you need it, you cannot go without it. There's no other way.
Ok that’s interesting to know, I can push back to my GP after these blood results. I don’t really know much about Hashimotos and my GP seemed pretty blasé when I mentioned it. She also said they won’t test for T4 unless there’s an abnormal result, I’m kind of hoping it’s abnormal tomorrow, but if it’s not I’ll push back to try the medication.
My GP said it can be difficult getting the right dose when starting out with an in range TSH level, which I think is why she was reluctant.
Your GP is talking rot, like most of them do. Of course you won't get the right dose when starting out, whether the TSH is in-range or not. The TSH has very little to do with it. Which is why one follows a protocol:
all hormones need to be started low and increased slowly, for levo that means:
* starting on 50 mcg, unless over 60 or with a known heart condition, in which case it's 25 mcg
* retesting six to eight weeks later and dose increased by 25 mcg maximum - can be less but at that point it usually isn't
* repeat above until all symptoms have gone and patient feels well
You're not going to get to 'the right dose' for quite a while, that's a given. Nothing happens quickly with hormones. I suspect she said that, and was reluctant to prescribe, because she knows she's out of her depth.
Hashi's is nothing to get in a tizz over - nor any more that any other cause of hypo. It is just that: the cause of your hypo. It's an autoimmune disease where the immune system attacks the thyroid, mistaking it for the enemy, and slowly destroys it over time. The antibodies are tested because they are a handy way of recognising the disease - although not all Hashi's people ever have high antibodies - but they don't do you any harm. They are there to clean up the blood after an immune system attack. Their level is in no way an indication of the seriousness, or otherwise, of the disease, and their levels fluctuate all the time. Which is why there's no point in retesting them after the initial diagnosis.
The reason it's important to know if you have Hashi's is because of the way the thyroid hormone/TSH levels can also fluctuate. During an attack on the thyroid, the dying cells deposit their stock of hormone into the blood, causing FT4/3 levels to rise sharply. The TSH therefore falls. We call this a Hashi's 'hyper' swing. The high hormone levels are only temporary, they will fall as the excess T4/T3 is used up/excreted. However, as very few doctors know anything about this, they are likely to start talking about 'going hyper', or accuse the patient of 'abusing' their levo. They tend to slash the dose and be reluctant to raise it again after the levels go down again. They have been known to stop the prescription altogether! So, it's important that the patient at least knows what's going on with their body!
My results are back, as they’re abnormal my GP is willing to treat me. I’m a little worried now as I went down the rabbit hole of looking into how safe levothyroxine is as I’ll presumably need to take it for life if I have hypothyroidism caused by Hashis. I read about 50% increased risk of cancer in a recent study which has made me second guess what’s right to do here. I’ve spent so long not feeling right that how I feel is what feels normal to me, I can’t remember ever feeling well 😅
Thank you! I can’t get an appointment to see the GP now until the end of the month frustratingly, but will discuss that. What should the ideal range for my T4 be? Is 14.8 on the low side?
There is no ideal range for T4, there's only what suits you. Remember that T4 is basically a storage hormone, that doesn't do much until it is converted into T3. It's T3 that is needed by every single cell in the body, and therefore causes symptoms when it's too high or too low. Trouble is, not everybody is good at converting T4 to T3, so they sometimes need their FT4 quite high to get enough T3 to make them well. Rather than having an over-range FT4, these people should be offered some T3 to go with a reduced dose of levo. In an ideal world. But, we don't live in an ideal world, and doctors have no idea about any of this, I'm afraid. So, not sure your discussion with your GP would be very helpful.
Your GP will class it as subclinical anyway, because the TSH is under 10. We all know that's rubbish, but that's the way the NHS thinks.
But, your FT4 is far from 'normal', even though it's in the so-called 'normal' range. A 'normal' (euthyroid) FT4 would be at least 50% through the range, yours is only 28%. Much too low. There's little doubt that you are hypo.
What a fabulous summary of Hashis greygoose. I had this happen to me so definitely can relate to what you have written. Wish the NHS would employ you to train GPs on the subject who from my own experience have very little knowledge unfortunately.
Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:
a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and
symptoms of hypothyroidism.
You may need to be a little assertive (in a nice way) and present the NICE Guidelines to your GP or try a different more open minded GP
Always book blood test for 9am or earlier for highest TSH.
Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc
No result for folate.
Your B12 could be higher. A B complex is recommended to keep all the B's in balance. This B complex has all the right vitamins at a not unreasonable cost for 90 days supply, also contains the active form of folate. . amazon.co.uk/Liposomal-Soft...
Thanks for sharing, I’m going to go back to the GP and bring this up. The last GP I spoke to was completely dismissive and told me my bloods are the best they’ve ever been so it’s definitely nothing to do with my thyroid and I should see the rheumatologist!
note , The more recent result over ride the previous ones, so while you do have 2 consecutive over range results in 2013, they don't really count as far as diagnosing / starting treatment is concerned , because since then it's gone back into range and stayed there (as far as NHS are concerned) and most recently has come down to 3.5
So you need to be prepared for a bit of a struggle to get levo prescribed even with your history and antibodies.
The guidelines are full of stuff along the lines of 'slightly over range TSH results often come back into range by themselves without needing any treatment, so treatment not always needed/ beneficial' etc.
See what the 9 am test brings .. if TSH is not over range this time , emphasise the effect symptoms are having on daily function/ work , the positive TPOab antibody result , and the long history of high end TSH. (TSH is most commonly 1 or 2 ish in the majority of healthy people, anything over 3/4 should raise the index of suspicion ) .Put this graph under GP's nose during any conversation about "normal"/ in range TSH : healthunlocked.com/thyroidu... tsh-levels-in-healthy-people-with-no-known-thyroid-disease
Do you have any FT4 ( or fT3) results to go with any of those TSH results ?
ps on morning of 9 am GP test , just have water until after test.
recent study showed eating breakfast lowered TSH by up to 30 % in some people ... it doesn't have this much effect in everyone , but, every little helps when you're dealing with borderline results.
Details of that study are in my 2nd reply to this post : healthunlocked.com/thyroidu... suggested-thyroid-hormone-test-timing-protocols
Almost everything you say I can relate to. I started feeling unwell in 2012. If you read my profile you will see like you I never was told that I have had underactive thyroid all that time. They kept saying borderline. It wasnt. It was outside the range. Only started medication recently and that took me to dig my heels in and insist my thyroid be treated. I'm not out of the woods yet, but joining this forum has educated me so much. Know your results for every test you get, know the ranges as they are all different depending on laboratory. You will get great help here. These people are better than the doctors because they really DO care. I do hope you get to the bottom of it soon.
That’s encouraging to hear, thank you. I’ve given up so many times as I’ve learnt to just live with my aches and pains, but it’s getting much worse now. I’ll definitely be pursuing clarity on my results.
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
What a great reply, thank you so much for all of this. It’s really great to see all this resource and the advice on time of day for bloods. Most of my high readings have been in the morning, but my doctor never advised on what time of day to get tested. Once I get all my print outs I’ll come back here!
my thyroid being under active on and off, with antibodies present
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
My GP tested me for celiacs and it came back negative. I cut diary a year ago and my gut has been better since, I’ve requested a lactose intolerance test but my GP seemed to think there was no point as I’d managed to cut diary and control symptoms by doing so. Slightly irritating as I would like to know for sure.
Trying gluten free seems like something to do, even though it restricts food options further, but I’d be willing to try anything at this point.
I was sort of where you are, bloods high/low in range though, NHS GPs wouldn't consider that I had a thyroid problem. I eventually lost patience, got my own tests done, and went to a private GP from Thyroid UK's list and got prescribed that way; lots of members here actually self-treat. There are loads of books we can recommend too if you want to get better informed. This is all a bit cart before the horse as, until the experienced forum members and admins see your results, we aren't sure it is a thyroid problem (though it sounds very possible from what you say) but remembering how I felt a year ago, I wanted to give you some reassurance on a way forward if it is. You've got your first foot on the path and you're in the right place
Thank you so much, that’s reassuring. Yes I’d like to know for certain what it is. I kept ignoring things presuming it’s just getting old but it’s been so long now!
Hi EclipseMoon
You’ve certainly been through the mill! So sorry you’ve had to suffer for so long. And unnecessarily.
At least now you're going in the right direction by being on here.
Like you, had years of suffering/tests (fibromyalgia diagnosis included) where the drs didn't take any notice of thyroid results.
But thanks to the knowledge shared on here, finally could get some help, test correctly and be aware of optimal rather than, "within range" results that drs pass off as normal.
Keep going, EclipseMoon, with knowledge gathered on here, and hope to see you improving.
This sounds a bit like me, except that I’m only just starting on this journey after getting a raised TSH blood result about three weeks ago. Up to that point no one had ever suggested that I might have a thyroid problem. Having come on this site to try to find out more about what a raised TSH result might mean I discovered that various problems/symptoms I’ve had for at least the past eight to ten years (including very dry eyes/skin, digestive issues, gout and, most recently, increasing levels of tiredness, a diagnosis of fibromyalgia and some breathing issues - all in a person with a BMI of 20) might be down to this one thing. The problem I have is that I have other conditions which could explain some of them and I suspect this may be why a possible thyroid problem may have been overlooked.
I’m now awaiting the results of further blood tests which are taking longer than expected to come through (not just my opinion, but also the opinion of the surgery where they were taken). Whatever comes back result wise, I’ve been advised by the nurse who took them to make an appointment with a GP to discuss the situation.
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