I'm not a frequent poster, but have read a lot here. I thought I'd just document my conversation this morning with my GP - a seriously experienced guy (according to his write-up on the practice's website) and a GP educator. He says, forcefully, that I simply cannot have anything wrong with my thyroid if my TSH is normal. And no, nobody, absolutely nobody, would ever test FT4 if the thyroid is normal, only if its abnormal. Because if the TSH is normal, then there's nothing, absolutely and categorically nothing, wrong with your thyroid. Yes you have a lot of symptoms, but they cannot be thyroid problems because your TSH is normal (its 1, having gone down over last year from 1.4 - yes, I know that's indicative of hyper not hypo, I don't know why this is, but it seems to be going down not up). I tried to tell him that the reason I thought it might, possibly, be thyroid is because when I go on holiday, and can get actual lamb sweetbreads (which I lightly fry and eat on toast) my symptoms go away. He brushed me off. Anyway, he said huffily, if I wrote you up a referral then the consultant would not take you because your test results are normal - I had intended to try a 'choose and book' with Addenbrooks to try and get a thyroid specialist rather than a diabetic one, and one with some experience of 'difficult symptoms'. But no, its not going to happen. my 'mixed bag' of symptoms have meant I'm excluded from treatment - apart, of course, from the happy pills (certraline [?]) which he's pleased to be able to prescribe, and maybe in a few weeks many of the symptoms will have cleared up ....... So, I'm left gutted, but with happy pills. I am at the end of a fraught divorce, there may, in some months, be some money to pay for private tests, and I will do them if there is. But the NHS has paid for B12, normal. Ferritin - very high, but not at the haemochromatosis level and therefore also not relevant to treat. Vit D - excellent, as you would expect from somebody who loves to be in the garden even if all they can do is lie there and wonder if this is all life has to offer, lying down exhausted and freezing cold until the end comes. I will, however, wait until the dogs go before embarking on any final solution.
Gutted, exhausted, freezing cold and just not going anywhere.
L.
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lesleyfromkent
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Sorry you are so disappointed, its an awful feeling when you get your hopes up for some answers and they just fob you off as stressed, depressed, menopausal or a hypochondriac. Or even worse, all 4. Sadly on one point your GP is correct, even if he referred you to the Endos they would most likely reject the referral because according to them everything is hunky dorey.
Have you ever tested your thyroid function yourself, including antibodies? Private tests will look at TSH, FT4 and FT3 as well as any raised antibodies you might have if you choose that option. At least then you will have a good idea about your levels. It's possible to have normal TSH and low FT4 levels, known as Central Hypothyroidism. Its much less common than Primary Hypothyroid.
I'll tell you my story about my journey in getting diagnosed with an overactive thyroid, firstly and unfortunately as other members have mentioned you will need to get a full thyroid blood panel done, this is where my surgery let me down as my TSH in late 2014 showed 2 short suppressed TSH now I knew nothing of these results as my gp thought it best no to tell me😠 anyway over the next years I began to show symptoms of overactivity in that I by now had a noticeable tremor was sweating very bad were jittery and starting to loose weight not through dieting, I was constantly at my surgery unfortunately again for me I kept getting this gp who knew nothing about these symptoms saying they were menupausal, he couldn't have been more wrong, I looked my symptoms up because I was very unwell they kept coming up as hyperthyroidism, I asked this gp if my symptoms could be connected to my thyroid immediately he said absolutely not! This back and forth went on till 2018 when by now I looked like skin and bone (gp congratulated me on my weight loss 🙄) I then demand he do full thyroid bloods to which he became annoyed but did do them they came bk in range or the TSH did, I was gutted, my poor son actually by this time was sure I had cancer😢.. Again I went bk again he reluctantly did bloods again the TSH was normal, I suffered till around the end of July 2018 when I could no longer stand it, I managed to get an appointment for bloods, the gp rang saying all my bloods were fine in range and to stop bothering him, in sep 2018 I eventually collapsed at home my son got me an emergency appointment with a completely different gp she diagnosed me on the spot did thyroid bloods and they came bk as overactive thyroid.. TSH.. suppressed... T3 24.3, so I now would like to know what my bloods were in that time that awful gp was doing them, I asked for printouts and guess what dates are missing.... The July ones🙄.. I lost my thyroid in 2019 due to it being thyrotoxicosis, I spoke to a lovely doctor on my ward who was so appalled by my treatment at the hands of my gp he got everything in motion for me, the endo appointment and uptake scan, he also told me my condition ( graves) was an auto immune condition in that my body was attacking my thyroid, I think hashis is also auto immune ( could be wrong tho) he also told me that sometimes the bloods will show normal range if your not going through an attack so you could see normal thyroid blood work ie if they only tested TSH, then during an attack your bloods will show out of range, he told me in order to see if your thyroid bloods are normal throughout say a time period you should test the bloods in 3 attempts to see if the TSH, T3, T4 remain in range also testing anti bodies, as we know on here getting the gp to test anything over a period of time is a no.. No... They only seem to test now if your feeling really unwell and then it's a fight and even worse if it comes bk normal, then you get the old.. "Off you go nothing to see here" even if your symptomatic 😠.. Its flipping awful how we are treated by the people who are supposed to be looking after us😢😢
I don't trust any of the GPs. If you click on my name it will take you to my 'personal page' and you can read how I eventually got diagnosed.
Before blood tests were introduced (costs NHS lots of ££££s) we were all diagnosed upon our clinical symptoms alone and given a trial of NDTs (natural dessicated thyroid hormones). Nowadays it is only a result of a blood test is required. NDTs contain all of the hormones a healthy thyroid gland would do and despite it saving lives from 1892.
Unfortunately, those people we'd expect to be knowledge the majority are anything but knowledgeable.
When we have a very young child, we are aware when they're not feeling well by their symptoms alone.
I tried to tell him that the reason I thought it might, possibly, be thyroid is because when I go on holiday, and can get actual lamb sweetbreads (which I lightly fry and eat on toast) my symptoms go away. He brushed me off.
What is the connection to thyroid? Sweetbreads are the thymus glands, part of the immune system. They don't produce thyroid hormones, so I'm not surprised he brushed that off.
Well, I'm inclined to think that the endo did not make the connection between 'sweetbreads' and 'thyroid problems', so that would be why he ignored what the OP was saying.
My auntie told me they used to give people a bit of (dried?) thyroid gland to chew on once a week , and then adjust the dose if required by giving them a bigger bit, or smaller bit the next time.
I have no reference for this other than "my auntie told me when i was little "
come to think of it , she did keep sheep .... and piglets ..and some baby goats that we used to play with .. and they were always disappearing shortly after we'd made friends with them ..
one time we went there for lunch at Easter and when we were nearly finished eating , we said "can we go out and play with billy now ?".. and she said " ,, um, well er no, you've just ate him... he's in here" pointing to the casserole dish .
Maybe there was more to her apparent well being on Levo than i realised ...
I found this out by reading about the Thyrogold guy, brain fog and cannot recall his name. Apparently case studies in the 1930s they simply fed them sauteed thyroid and "they got better". Or, i suppose, some of them did ....[actually, i'm not sure it was him - i had the late Dr Barry's books and others, and in one of them it referenced these "experiments" in the 30s]
I came to keto through paleo and am not frightened of butter - saute them in good tasty butter and it changes the experience! but, as with fried heart, you have to, sort of, be open to the experience....
i can tell you, but i'd prefer to do it privately - given blood is now classified as 'hazardous waste' at the butchers, and no butcher in kent will oblige, i don't want to 'out' them. i'm not good with this software, i'll get my son to show me how to direct message and let you know.
I'm going to call them thyroid glands in future, and not bother with diminutives. I'm British, and had never heard of rocky mountain oysters and wouldn't use that designation as its in the US not the UK and I'd not know whether people knew what I was talking about. I have come across the thymus, mainly when I was trying to get the thyroid glands by post from organic butchers in the UK. Thyroid it is from now on.
But the NHS has paid for B12, normal. Ferritin - very high, but not at the haemochromatosis level and therefore also not relevant to treat. Vit D - excellent
If you can get a copy of your results and the associated reference ranges and post them, we can tell you if they really are excellent. Anything in range is excellent according to most doctors. And since ferritin may be raised by inflammation a high level doesn't necessarily mean you have haemochromatosis it could have other causes. (To diagnose haemochromatosis you would need gene testing, I think. But I wouldn't swear to it.)
I would also be suspicious of a reducing TSH.
High or low cortisol can cause havoc with thyroid function and thyroid hormone production, and may reduce TSH (particularly high cortisol).
A damaged pituitary or hypothalamus may cause TSH levels to be too low for your needs (this is the cause of central hypothyroidism).
Yes you have a lot of symptoms, but they cannot be thyroid problems because your TSH is normal (its 1, having gone down over last year from 1.4 - yes, I know that's indicative of hyper not hypo,
It shows TSH results in a healthy population. The highest point of the graph is at a TSH of 1.25. In no way could a TSH of 1 be classified as hyperthyroid, and it would have to drop down an awful lot more than it has to be suggestive of hyperthyroidism. And even then you could still be hypothyroid if your pituitary wasn't producing sufficient TSH for your needs.
Just a personal anecdote...
I had high cortisol. My Free T4 and Free T3 were very, very low but in range, and my TSH was only slightly over range. It has never even reached 6. I managed to persuade a doctor to prescribe Levothyroxine (a miracle). I discovered around the same time this happened that my pituitary was squashed in one direction and stretched in another (found in an MRI - this was an accidental finding), and I suspect it almost certainly doesn't work at peak efficiency. Nobody has ever tested all the hormones my pituitary produces - there are quite a few. The only pituitary hormone I've ever had tested is TSH.
From reading on this forum I have very occasionally seen people quoting figures for Free T4 and Free T3 that are almost identical to what mine were before treatment. And these people had TSH levels of 10, 19, and 30, and were treated for hypothyroidism with a lot less trouble than I was. I was first told my thyroid was "borderline hypothyroid" 23 years before I got my first prescription. Unlike autoimmune hypothyroidism, central hypothyroidism isn't usually progressive. So I had "borderline hypothyroidism" for at least 23 years and my thyroid was considered to be healthy by every doctor who ever tested my thyroid function. I suspect I have had "borderline hypothyroidism" since early childhood or possibly since birth, along with high cortisol. I got my first Levo prescription in my 50s. I've had some symptoms of being hypo since pre-school age that disappeared when I started taking thyroid hormones. I'm not alone in this - others on this forum have said that they think they've been hypothyroid since childhood but weren't treated until middle age or older.
thank you so much for all the valuable information. I am going to run down and read carefully all the articles everyone has put up for me - very kind of you all. Someone advised going back to the Practice Manager/GP with the evidence, I shall do this. I don't expect anything but a standard letter reply, but I'll do it anyway.
Test results, all from mid-march this year:
serum ferritin 315, 'acceptable' [range - 13.00 to 150.00]
my understanding is that over 1,000 would be indicative of possible haemochromatosis and therefore lead the doc to test for the gene. They repeated this test because the lab said to as result in Feb was 330, so it came out essentially the same.
iron 17.7 [range 5.80 to 34.5] 'normal'
serum b12 is 287 [range 145 to 569]
folate 12.4 [8.8 to 60.8]
serum transferrin 2 [2 to 3.6]
serum TSH 1.1 [0.27 to 4.2] - down from 1.4 a year ago
vit D3 is 113 'normal' (doc said excellent!) [range ,24 = deficient to >50 sufficient for most of the population]
for interest:
HbA1c is 39 [range= 42 is pre-diabetic] and its come down 0.5 from 39.5 12 months ago.
There's a mixed bad of others [full blood count, bilirubin etc]. Should I post those too or are these sufficient?
serum ferritin 315, 'acceptable' [range - 13.00 to 150.00]
iron 17.7 [range 5.80 to 34.5] 'normal' --- 41.46% through the range
serum b12 is 287 [range 145 to 569] --- 33.49% through the range
folate 12.4 [8.8 to 60.8] --- 6.92% through the range
serum transferrin 2 [2 to 3.6] --- bottom of range
serum TSH 1.1 [0.27 to 4.2] - down from 1.4 a year ago
vit D3 is 113 'normal' (doc said excellent!) [range ,24 = deficient to >50 sufficient for most of the population]
HbA1c is 39 [range= 42 is pre-diabetic] and its come down 0.5 from 39.5 12 months ago.
...
Ferritin is rather high, but doctors don't generally pay attention to it until it gets to about 800 - 1000. Ideally your result would be about 80 - 100. If it is being raised by inflammation then it may fluctuate or reduce as other nutrients are improved and/or thyroid hormone levels are optimised. Going 100% gluten free (absolutely no cheating) may reduce inflammation even if you don't have coeliac disease. A lot of people with thyroid disease benefit from giving up gluten.
Iron
Optimal results for iron and other iron-related levels can be seen here :
Your result of approx 41% is lower than the recommended 55% - 65% for women, but it isn't dreadful.
Transferrin
Your result is bottom of range.
Low in range indicates lack of capacity for additional iron
Given the above results I would not suggest you take iron. If you were to take it it might send your ferritin rocketing up higher than it already is, and serum iron might get even lower.
Vitamin B12
There are various opinions on what optimal is for B12.
1) 500 ng/L - top of range
2) Upper half of range
3) Top of range
4) 1000 ng/L [Note that 1ng/L = 1 pg/mL]
The best supplement for B12 is methylcobalamin which can be bought on Amazon and other supplement sites around the web. Suggested dose would be 1000mcg per day.
Folate
Optimal for folate is upper half of the range. But having said that the range you've been given is one of the very high ones, and I try and stick to keeping mine in double figures, either 10 - 15 or 15 - 20.
The recommended supplement is methylfolate, NOT folic acid. Many people with thyroid disease can't metabolise folic acid very well, but can metabolise methylfolate.
When taking B vitamins like B12 and folate it is recommended that people take methylcobalamin, methylfolate AND a good quality B Complex such as Thorne Basic B.
When B12 and folate are optimal stop taking the separate B12 and folate supplements and just continue with the B Complex.
If your B12 and/or folate start to drop again you can take the additional supplements just a few days a week, e.g. taking one twice a week might be enough to keep levels optimal - but it requires trial and error.
TSH
Your result looks okay but may be too high for people with hypothyroidism but without Free T4 and Free T3 there is no way to know for certain. And a lot of getting levels right ought to depend on the patient's symptoms, but doctors don't care about those they only care about TSH being in range.
Vitamin D3 is fine. Optimal is either 100 - 150 nmol/L or 125 nmol/L depending on source.
HbA1c To reduce this it is necessary to reduce the sugar and grains in the diet. Adding extra fat and protein to make up for the reduced sugar and grains is helpful.
So sorry you're being treated like this and fobbed off. Unfortunately I and many others on this forum know what that's like....it's terrible particularly when you feel very unwell and are struggling daily.
If you can muster the energy I would write to the practice manager and the gp. Briefly outline your problems and what you want them to do about it. Include some of the links that SeasideSusie provides.
I've managed to get blood tests and an NHS referral to an endo through doing this. It took a few polite letters to the surgery but I got results that way; whereas before I was being told to go away/it's all in your head/come back next year for repeat blood tests.
I'm currently being investigated for central hypo but am still in the process of getting a possible diagnosis. I've never had a high TSH but have an ongoing low in range and now below range FT4.
He says, forcefully, that I simply cannot have anything wrong with my thyroid if my TSH is normal. And no, nobody, absolutely nobody, would ever test FT4 if the thyroid is normal, only if its abnormal.
Unfortunately they are trained to focus TSH....that's complete nonsense.
Originally a TSH test was designed to diagnose hypothyroidism but things have moved on!
It is quite normal for TSH and FT4 to be tested together though ideally ( and rarely) FT3 should also be included....usually if TSH is very low/ suppressed.
FT3 is the most important lab it shows the amount of T3 in the serum (which, with no problem present , will become active once it reaches the nuclei of the cells.
Low T3 = poor health.
is important to also consider symptoms though some explain these as stress related!
They see antidepressants as a cure all for women with conditions they failed to diagnose!
Depression and stress are symptoms of hypothyroidism!
Don't accept this lying down you need further tests and very possibly thyroid replacement hormone.
Oh...and sweetbreads don't provide thyroid hormones!
I would suggest you write to your practice manager explaining your concerns about this diagnosis, have a full thyroid test or at least TSH and FT4, and /or visit another GP who knows what he is talking about and doesn't feel the need to be described as seriously experienced!
Hello Lesley, you don't say what your symptoms are and why you think they are being caused by your thyroid. Is it the fact you feel tired and cold? Could there may be another reason for your symptoms? Has the Dr explored other possible causes? Not everything is caused by a thyroid problem and your TSH does look alright at face value.
Hi Lulu 2607, I have a long list of symptoms that are a mixed bag. Some hyper, some hypo. No, GP has not considered anything else at all. Comment from 2 different ones at the same practice, "oh dear, you do seem to have a lot of problems don't you" and fobbed off with prescription for happy pills last year. And recently "that's an awful lot of problems [i'd mentioned the 4 ones I considered major - fatigue, no taste, freezing cold all the time and brain fog] we can't deal with them all in one phone call, what about the previous pills, I can give you some certraline ......".thanks for taking the time to reply. appreciated.
I can relate to your problem. In 2014 I started with various symptoms and had a useless GP who sent me for various blood tests but couldn't find anything to explain it. My TSH was borderline high and I had antibodies for Hashimotos. As he had no other explanation for my symptoms I badgered him about my thyroid to no avail. To cut a long story short, my problem at that time wasn't due to thyroid, ( which did become a very serious problem a few years later), which is why I would advise you see a decent clued up Dr who can get to the bottom of your problem. It may or may not be thyroid related but that needs to be addressed by a doctor who knows what tests you need to see what's causing your symptoms. I too was advised it may be all 'in my head', but it definitely wasn't, although the stress of being ill and unable to get a diagnosis does affect your mental health.
I was told that you can get your bloods done you have to purchase them £79 for full thyroid then get someone to draw the blood but it may give you an indication.There are a few on line not able to put name in but if in U.K. starts with M
Really intrigued me. I had NO SX, yet on a random annual thyroid test I was told I needed replacement. I went from nl healthy to hyperthyroid and when I complained I was told I needed to get used of "feeling Nl" . In one year I had low grade hypertension which I now find can be caused by thyroid replacement ( Mayo Clinic site). This guy destroyed my good health After just after 4 3/4 years I had the courage to slowly with drew and am trying to regain health. It taught me NEVER TRUST DOCTORS! When I recently changed MD due to insurance change I discovered how much creative liberty this doctor had done with my "Problem List" this doctor had created a profile that sadly makes me look like a debilitated American . If people had real access with what doctors write about them perhaps poor practices could be flushed out of healthcare. How do you know a good doctor from a poor doctor when you are locked in by health insurance limitations ? Here in the U.S.A. people look like either anorexic or like the "Michaelian Men" few people actually look or move like healthy human beings! Done a lot of people watching during the shut downs and it is alarming !
Late post, was looking for something else and read your frustration.
I know this won't help you get to what you need, but your doctor is wrong.
I had completely normal blood work but had a thyroidectomy because two of my nodules were obstructing air flow. I had a myriad of other symptoms that seemed hypothyroid related but these were more of an urgent situation.
When my thyroid was removed it was immediately deemed diseased by the surgeon. And labelled as lymphocytic thyroiditis, grey purple in colour (not normal), twice the normal size and weight on the pathology report.
And here I was led to believe that I was taking out a healthy, well-working thyroid simply because I was having serious breathing and swallowing issues with two of the nodules & therefore did not have a choice. (My surgeon has had patients where nodules regrew after them being ablated in other countries & we don't offer it in Canada anyway.)
There is a YouTube doctor - so sorry do not remember his name (Scandinavian - popular) that talks about how about how a specific range of low normal TSH can be an issue. And that many people would believe it is thyroid heading towards hyperthyroidism, if not normal. It is not - is a hypothyroid issue, but a different form. I know that is vague and confusing. I just don't want to say more as I do not understand it all.
I don't know of the validity of all that, but I do wonder if that was indeed my issue as that is where my TSH used to regularly be - and yet out came a diseased thyroid.
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Levothyroxine not making me feel better.
Can we get a petition going 
Can I request a second opinion with a different endo in a different hospital?
Getting tested and dumb doctors
