To give you some background, I have suspected that I have an under active thyroid for about 20 years. It is the only thing that makes sense when I read the symptoms, I have practically all of them. In addition, my mother has an under active thyroid and my grandmother and great grandmother on my father’s side both had thyroid problems. I have had tests done in the past and they have always shown my results as ‘normal’.
I am now enjoying the delights of menopause which is making everything worse.
A few weeks ago, I spoke with a female GP about my HRT and she said she would run some blood tests to check if my thyroid was causing some of the issues. A week after the tests, I got a letter asking me to make an appointment with a doctor to discuss my results. Stupidly, I took the first appointment available rather than going back to the same GP. I was convinced that my tests must have shown something was up and that most likely it was going to be my thyroid.
I went to the appointment, I’d not seen this GP before. He wasn’t sure why I was having the tests done. My serum C reactive protein level was 20 mg/l which indicates an infection but not what it is. I know this can be linked to the thyroid. I asked him about my thyroid and he was extremely dismissive. He said my results were normal and words to the effect that he is ‘old school’ so if the results are normal, there is nothing wrong with the thyroid. He said my TSH was normal as was my T4. I asked if those were the definitive tests and he said yes. I left the appointment rather frustrated and actually confused as to why I had been called in. He didn’t even suggest running further tests on the origin of any infection, his view was the more tests you do, the more you are likely to find. 🤦🏻♀️
I did get a copy of my results which were as follows:
TSH - 1.27mU/L (0.55 - 4.78)
T4 - 13.9pmol/L (11.5 - 22.7)
I’ve been reading some of the advice on here that talks about testing for T3 and thyroid antibodies, also that the test should be done before 9am, mine was done at midday.
I’d be grateful to understand whether I should accept my thyroid is fine or should push to have further investigations. I feel so let down, I thought I had finally got an explanation for the symptoms I’ve been struggling with for years. I don’t want to be an awkward patient but I do feel I’ve been fobbed off 😞.
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Louiesmum
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So if you tested at midday your TSH (which is what most doctors go on) will be lower. It's recommended to get thyroid levels tested at or before 9am so it shows at it's highest point.
They haven't tested your FT3 level which is really important (if they did but know it), or your thyroid antibodies, which might give a clue to autoimmune thyroid issues lurking in the background.
On the basis of those results they can't be seen as conclusive due to not including FT3 and antibodies. It would also be helpful to see if you have any low levels of vitamins. If you can, then I'd recommend getting a full thyroid and vitamin check done with either medichecks or Blue Horizons. Make sure your blood draw is at 9am or earlier when fasting. Then come back here and post the results for people to comment.
The more tests you do, the more you are likely to find…
Well yes, that’s kind of the point! 🤦🏽♀️
Hello and welcome. One thing many of us have in common here is doctors who say the strangest things…
Let’s start with those thyroid results. They don’t, at face value, suggest a thyroid problem. But these aren’t definitive tests—it would have been good to have your thyroid antibodies checked and an FT3 result to see whether one, you’ve got a major thyroid problem brewing (the symptoms of autoimmune thyroid disease tend to show up long before you see it in blood test results) and two, how well you’re converting T4 to T3 (the active thyroid hormone).
They weren’t done though. And I suspect you’ll have a fight on your hands to get them done—many GPs don’t see the need.
But let’s also explain that this might not be your thyroid. There are some other great thyroid hormone deficiency mimickers—low Vit B12, low folate, low iron/ferritin and low Vit D. Just one of those can leave you feeling lousy and sometimes we find out we’re low in more than one.
That said, I think the reason you were called in was that CRP result. That’s actually quite high—moving into the bracket of “something quite serious might be going on”. The doctor you saw shouldn’t have dismissed that—I think your original doctor would have run more tests on the back of that result to see whether there was something else going on.
Don’t panic that I’ve said that—it’s not a given that it’s something major. C Reactive Protein results do sometimes go high for more minor inflammation and mundane infections. But this could be an indicator of a serious infection or another auto-immune disorder. Hard to guess what unless you’ve got symptoms of inflammation?
I think in your position I’d go back to the doctor—make an appointment to see the one you saw the first time. (I’ve done this before when I’ve felt unheard by the first doctor available—what’s more, it turned out to be exactly the right thing to do). Even if it takes a few weeks to see her, I think she might have the right mindset. I think further tests are warranted to be honest.
Medics will be hard pressed to argue with the world reknowned authors of the above link!!
Many of us test privately because of this NHS debacle. GPs are wrongly fixated on TSH which fluctutes and is not a good marker.....research proves this but medics haven't caught up
Your FT4 may be within reference range but that does not mean it is correct for you .
"Normal" means nothing.... other than the result is somewhere within the range
Instead, we aim to find the specific point within the ref range where we feel well ....and FT4. - 13.9pmol/L (11.5 - 22.7) is clearly not it for you.
Your FT4 is only. 21.43% through the ref range!
Both Frees should be roughly approaching 75% through the ref range
We are all different so levels will vary from person to person but at 21.43% you are bound to feel under par.
I think you will find that is the explanation for your years of poor health......you are hypothyroid and require replacement hormone.
I, and many here have experienced similar poor diagnoses and medication....
I suggest you visit the GP who wanted to discuss your results....hopefully she is more switched on!
He didn’t even suggest running further tests on the origin of any infection, his view was the more tests you do, the more you are likely to find.
Doesn't he understand that is exactly the job of a medic....to find out what is wrong with a patient. Grrrrrr!!!
Explain your concerns, quote from the above links if needs be, and ask to have levothyroxine treatment initated at 50mcg. You should be retested after 6 weeks on a steady dose and then given an increase of 25mcg......this will probably need t be repeated until you feel better.
You are best to take the polite, gentle approach....medics are easily upset if they fear the patient is more knowledgeable than they are!! And remember to emphasise your ( possible) genetic links.
Thank you all for your advice, I have made an appointment with the female GP for Wednesday next week. I will make sure I am fully prepared and ready to state my position. From what I’ve heard from neighbours, she’s very thorough.
They only tested TSH and T4,
I did tell him about the family history, he was just not going to entertain the idea. My mother also has Vitamin B12 deficiency, not sure if this is also hereditary. I have previously been diagnosed with Vitamin D deficiency but really struggled with the medication, it made me even more constipated than normal and was extremely painful.
I’ll let you know how it goes, but I am so grateful for your advice. Thank you.
My mother had a B12 deficiency and I also have the same condition but my GP has told me that I can have as many injections as I feel I need. So instead of three monthly I have a monthly jab.
The main reason is that my mother's GP told her 'you don't need further B12 injections as your result is fine'. Both my sister and I thought that was 'good' that mother needed no more injections and had no idea of the consequences of not having B12 injections. We also didn't have internet connection.
The result of the doctor's decision to stop B12 injections caused my mother to develop stomach cancer.
B12 deficiency often runs in families and is a co morbidity of hypothyroidism. B12 and hypothyroidism symptoms are remarkably similar. The advice above is excellent. Interpretation of b12 bloods is very difficult if you supplement . Don't start supplements of b12 if you plan to test.
B12 serum levels, like hypothyroidism levels, are commonly misunderstood by GPs.
He said my results were normal and words to the effect that he is ‘old school’ so if the results are normal, there is nothing wrong with the thyroid.
It would appear he is 'old school' in that he hasn't read a new text book since he qualified as a doctor. Those thirty year old text books on his surgery shelves can never be wrong, after all.
After I posted about mums B12 deficiency, I looked it up. She actually has Pernicious Anaemia which I thought was the same but apparently it’s not and it can be hereditary. She was diagnosed with both at the same time so was pretty low by the time they picked it up. She was about 60 at the time. I’m 56 now so am probably heading down the same path, just not got to the point when my bloods catch up with my symptoms yet.
The advice I’ve had here has strengthened my resolve to pursue this.
The problem I’ve found is the symptoms can be caused by so many other issues. I’ve always struggled with my weight and my feet are always cold but I was born with a condition that reduces my mobility and I have poor circulation in my legs so I’ve always blamed the condition for that.
I’m always tired, again I blamed the condition, working full time and getting older. I went part time, felt better for a bit but the tiredness crept back. I retired in February this year, felt better for a bit but again it’s crept back.
My hands are always colder than the rest of me and also my nose. I’ve battled with constipation all my life, again blamed my reduced mobility. I’ve suffered from depression and anxiety since my 20s. My sleep is all over the place, I go to bed tired but can’t get off to sleep easily and then I wake multiple times.
My periods were a nightmare, very heavy and irregular. I also had fertility problems which sadly meant I didn’t have the family I would have loved.
My skin has gone dry in patches and my hairbrush is clogged with hair all the time.
I have more symptoms but these are the main ones causing me problems.
On their own, these symptoms can be explained away but when you put them all together I think it paints a clear picture.
Well, I had my appointment with the female doctor and told her exactly how I was feeling. She seemed to echo the whole idea that TSH is the key but she has agreed to test T3 and the thyroid antibodies, although she doesn’t think they will show anything. She’s also testing vit D and B12 as well as for coeliac disease (which I strongly doubt). I have to go back on the antidepressants that I had just weaned myself off. She did say that some countries treat the thyroid symptoms rather than the blood tests but that this was not done in the uk. I hadn’t asked about that so maybe she was thinking out loud. Anyway, bloods being done tomorrow so will see what they bring.
There's a lot more info I and other forum members can pass onto you if you post on PAS forum. There might be something on PAS forum that could help your mum.
Unfortunately, like thyroid disease, B12 deficiency is not always as well understood as it should be by health professionals.
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One thing many of us have in common here is doctors who say the strangest things…
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