I have been living with hypo type symptoms for decades but have been very unwell for the last 10 years. I have long suspected thyroid issues being a part of it. I had a diagnosis of M.E. in 2021 but likely would have had one earlier if I had gone to GP's. I am mostly home bound often bed/sofa bound. About 9 months ago I developed a swelling in my neck. I strongly suspected it was a goitre and recently went to GP. He mumbled a couple of measurements when examining me and one of them was 7cm I didn't hear the other. He said he thought it was my thyroid as when I swallowed the lump moved with my thyroid (?). I feel like I have something stuck in my throat and cant wear round neck clothing. I have all the hypo symptoms....extreme fatigue, always freezing, hair falling (have literally half the amount I used to have), chronic constipation, weight gain (not loads as my diet is good but at least a stone heavier than I was) and over the last 5 years I have alarming cognitive decline. And probably other hypo symptoms that ive forgotten !!
For last 10 years my TSH has been really quite low - 0.33 in 2020 so I was thinking maybe central hypo ? But as you all know its almost impossible to get them to consider that. Recent results are not too irregular which is so kinda frustrating as I know something is wrong but I cant fathom what and they are unlikely to help with results like these.
Recent results:
TSH 0.71
FT3 5.2
FT4 13.8
B12 317
Folate 13.5
Ferritin 14
I do have some irregularities in my CBC....high platelets (which ive had for at least 10 years) and low total WBC and low neutrophils. Ive looked this up and found several references to this being an indication of hashi's. My mother had autoimmune (MS) and my aunt (GBS) so autoimmunity is in my family.
I guess I need to do an antibody test ? I asked the GP but of course they said no. He said he would refer me for a scan but when I called up today to check it seemed it had not been done (3 weeks after my appointment) and having researched a bit it seems maybe they wont if all the functional thyroid markers are "normal" and they will just say oh well u have an asymptomatic goitre lets ignore it. Obviously im not asymptomatic at all but they dont believe any of what I say and it all goes under the umbrella of "oh she has M.E" which despite the change in NICE guidelines is still considered a mental health disorder when dealing with actual clinicians within the NHS (in my experience).
So do we think I have an issue with my thyroid ? Assuming it is a goitre there must be some kind of issue right ? Especially as I am chronically ill and with fairly classic hypo symptoms. But why are my thyroid markers not more abnormal ??! And with the low TSH if it is central hypo how does that connect to hashi 's ?
So grateful for any wisdom as im confused and feeling pretty desperate as my health has been so much worse then last 9 months.
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Biba22
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I'm afraid we need the ranges for those results to make any sense of those results, because ranges vary from lab to lab.
Your FT4 looks like it might be low, and your TSH is pretty much euthyroid (bit on the low-side, though), but what time of day was the blood draw for this test? And was it fasting?
Your B12 is much too low and that will probably be causing some of your symptoms. And your ferritin looks deficient - your doctor should be doing something about that, starting with a full iron panel. And that, too, will be causing a lot of symptoms - fatigue for a start. So, you really ought to start by sorting those out.
Yes, you do need an antibody test but doctors rarely understand the significance of antibodies and think they are irrelevant. But you might be better off getting those tested with a private blood test because there are two Hashi's antibodies - TPO and Tg - and the NHS will only test the TPOab.
Assuming it is a goitre there must be some kind of issue right ? Especially as I am chronically ill and with fairly classic hypo symptoms.
A goitre is a swollen thyroid, and something must be causing it to swell, you're right. And the most usual cause is Hashi's. But low B12 symptoms are pretty much the same as hypo symptoms, so a lot of them could be down to that.
But why are my thyroid markers not more abnormal ??!
Presumably because your thyroid hasn't yet been destroyed enough. It takes times and symptoms often preceed blood abnormalities. However, the disease is progressive so the blood levels will get worse with time.
And with the low TSH if it is central hypo how does that connect to hashi 's ?
It doesn't. But there's no reason why you can't have both at the same time.
TSH is not a very reliable indicator of thyroid status because it can be affected by so many things. Doctors are totally wrong to set so much store by it. But they don't understand it - they don't even seem to understand that the TSH varies throughout the day! And, also, it moves far more slowly than thyroid hormone levels. And thyroid hormone levels can change quite rapidly with Hashi's, due to the nature of the disease. It takes the TSH time to catch up.
Is this the only thyroid test you've had done? Do you have others that are similar? Or do levels fluctuate?
Ferritin 14 11-307 ug/l (if <100may not exclude iron deficiency particularly in infection and inflammation)
Unfortunately they didn't do a full iron panel last week.
I have some thyroid tests from before...
Nov 2020 TSH 0.33 0.30-4.20 mU/L
March 2017 TSH 1.29 0.27-4.2 mlU/L
T3 3.93 3.1-6.8 pmol/L
T4 14.28 12-22 pmol/L
TgAb 10.92 <115 kU/L
TPOAb 5.63 <34 klU/L
June 2016 TSH 0.94 0.30-4.20 mU/L
Nov 2013 TSH 0.85 0.35-5.50 mU/L
And ferritin and iron and B12 tests from before
Nov 2020 Ferritin 20.2 10-200 microg/L
Transferrin saturation index 22 16-50 %
Serum transferrin 2.29 1.80-3.60 g/L
Serum iron 11.1 11.00-30.00 micromol/L
B12 537 180.00-900.00 ng/L
June 2016 Ferritin 12.5 10-200 microg/L
Im thinking of doing the medichecks Advanced Thyroid so I can do an early morning fasting test and also check Ab's and do you think the active B12 test is useful ? Or do I need to do the MMA and/or homocysteine ? As im sure everyone is aware its so hard to get any help/support (from medics or friends and family) unless you have a test that proves there is an issue. I did trial B12 SI in 2021 and it sent me absolutely crazy which I learnt afterwards indicates I am very deficient....adrenaline surges due to down regulation of receptors or something...of course I can remember the exact details as my brain function is appalling ! I was doing all the co factors but after an initial improvement in energy I was feeling extremely mentally unstable as a direct result of the injections and it wasn't sustainable at the time to continue.
Incase this is relevant I highly suspect genetic snips around these nutrients when looking at family history. Father died at 57 from heart disease. Mother died at 51 from MS complications. Siblings all have multiple issues that indicate these snips.
OK, so your TSH won't have been at its highest. To get it at its highest you need to have the blood draw before 9 am. So, that doesn't tell us much. But, your low ferritin could have something to do with your low-ish TSH.
FT4: 5.2 pmol/l (Range 4 - 6.6) 46.15%
FT4: 13.8 pmol/l (Range 7.9 - 20) 48.76%
Antibodies are negative
They are low-ish, but not necessarily hypo. You would definitely not get a hypo diagnosis with those numbers.
But your B12 is too low, and low B12 causes symptoms that very much resemble hypo symptoms.
And your ferritin is too low, as you know. What is your GP doing about that? Because he should be doing something.
So, all in all, it rather sounds like your problem is related to B12 than thyroid. So, if I were you, I'd ask questions on the Pernicious Anemia forum as they are better equiped to answer them than I:
Thanks for your reply. The Ab test was back in 2017 so a good while ago. Do you think its worth doing one now I have a goitre ? Well thats if it IS a goitre ?? The GP seemed to think it was. Its large, visible when looking at my neck and makes me feel like I have something stuck in my throat.
The previous test in 2020 was an early morning fasting and thats when my TSH was at its lowest of all the tests ive had over the years - 0.33...but I realise that was almost 4 years ago now so maybe not relevant.
Of course they have said nothing about the ferritin and wont believe my B12 is deficient cause well within their ranges. I guess im on my own with this.
I havent previously considered PA but I will do some research about how to rule in or out.
Im now having a tight chest, breathlessness and even some mild chest pain....is this my low iron/ferritin ?
Oh, you have a goitre? Well, that could mean Hashi's. A goitre is a swollen thyroid so usually means thyroid problems of some sort. So, yes, worth getting your antibodies retested. But, best don't privately because the NHS will only test TPO antibodies, but it could be that your Tg antibodies are high rather than your TPOab. The NHS doesn't believe that is possible, but it most certainly is.
Your B12 is within range, yes, but low in the range, and should be at least 550. Below that and you can suffer from irreparable neurological damage. But doctors just do not understand the importance of B12. As I said, check it out with the PA forum. With B12, it's not so much about the numbers, and more about the symptoms you have. And with similar numbers I had terrible symptoms. My GP, of course, said it was 'perfect'. Good job I knew enough not to believe him!
Your very low ferritin which Greygoose has already pointed out can make you feel extremely drained with little energy. You do mention that you have extreme fatigue. Your GP should be advising you with having such a low ferritin level.
I am not up to speed to advise you regarding your thyroid - still trying understand it now. However, your ferritin is low. Although the GP ranges may show yours as within the normal range, if you look at the NICE guidelines it says that at 30 you are iron deficient. On questioning my GP and listening to other professionals it should ideally not be below 50. Mine was 12 last year and was told it was normal by the GP. It was the nurse that probed me to go to see the GP. I couldn't tolerate the iron tablets, which I advised them about and my ferritin ended up being 10 in January and felt weak and unwell. I ended up having to pay for an iron infusion in March - the GP would not refer me for an iron infusion on NHS. I have since just learnt that this and many other symptoms I experience is linked to my Hasimotos, therefore this is how I have ended up joining Healthunlocked!! So it would be worth you doing a bit of research and taking it to your GP.
Yes. The Dr who did the iron infusion and commenced the B12 injections did the blood tests to try to determine the cause. However, I was known to have hypothyroidism since 2012 and was on levothyroxine anyway. I had never been advised that it was Hashimotos and I certainly did not know until the last few months that it can cause so many issues😒. I am still not feeling well and have this week had a private appointment with a thyroid clinic and they say I have been under treated for years, although the GP has been telling me that results were normal (as it is in their ranges!) It sometimes feels like we have to do all the ground work ourselves!! Good luck with your situation xx
If GP wont test antibodies then you can get them tested privately. This is sometimes better as thn you can test 2 types of antibody (TPO & Tg) as opposed to the NHS 1 - TPO.
Before you go any further down the thyroid route there is the issue of low vitamin levels which do go hand in hand with low thyroid levels due to the gut absorption issues hypo people have.
Occassionally low vitmin levels can affect TSH so its essential to raise these levels to optimal which will also improve symptoms in the process.
Have you been tested for coeliac, if not then ask GP to?
Ferritin is deficient. NICE state that a level of 30 or less is deficient. GP should prescribe iron tablets but if not then many members do well with this product.
I will attach a link of low ferritin symptoms and then you can see how important it is to get your level raised up. You need to get it to 90-100.
Are you vegan or vegetarian? If not:
B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...
If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.
If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.
Thank you very much for your response. Ive been gluten free for many many years. Very occasional consumption. I was a pretty much life long vegi and vegan but not now and trying hard to increase animal foods. I have been eating very small amounts for about the last 10 years but now increasing to regular....hard cause my digestion is rubbish and have histamine intolerance plus a big aversion to them !
Ive had some Vitamin D tests and im very serious about ensuring plenty of sun exposure. Last test in spring last year was 94
I do think I have issues with B12 and the other B's (see my reply to Greygoose). I have supplemented previously including P5P with mixed results but I need to revisit. It can be such a merry go round trying to work out what the root issues are when the NHS are deeply unhelpful and I have very little resources for private help/testing/supplements. And my illness has become so entrenched that now im very reactive to any supplements/foods and have such little capacity for worsening symptoms as I live alone. What a mess !
Firstly, always book a thyroid test for 9am or earlier when TSH is highest.
Recommended blood test protocol: Test at 9am (or as close as possible), fasting & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).
Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day.
Has GP offered an iron supplement? They should do but if not then buy the one I recommended, it works well.
Get going with the vitamins I recommended, you will need a lot of B12 and then retest thyroid early morning aafter 3-4 months.
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Newbie, Hyperactive? Hashi's? Who knows, advice needed. 
Confused and a little discouraged
So cross with GP! But so confused with blood results and how I feel.
Could a lack of iodine lower the TSH level?
Thyroid and Adrenal glands
