OK, so I've been feeling awful since Oct/Nov last year, I have so many hypothyroid symptoms (its like going down the tick list saying yes, yes, yes), but it's got to the point where I'm now working half my normal hours because my fatigue is so bad, I have awful brain fog and I have pain in my muscles and I'm just so cold all the time.
I had bloods taken in early June which showed a normal TSH and an abnormal low Free T4.
Serum TSH 2.128 mU/L (range 0.570-3.6)
Free T4 7.4 pmol/L (range 7.9-14.0)
The GP messaged me to say that the low T4 could be because of taking biotin in multivitamins, but I don't take them, so there's obviously something going on. I made another appointment to have further checks in case it was a parathyroid issues because of the normal TSH. My results came back today as abnormal for:
TPO Thyroid autoantibodies 26.2U/mL (normal range 0.0-9.0)
Serum TSH 3.73mU/L (range 0.570-3.6)
Serum free T4 level 7.8pmol/L (range 7.9-14.0)
I was also checked for: Parathyroid, bone profile, Vit D, Prolactin, Cortisol, Thyroglobulin, Thyroglob-Christies (I have no idea what this is), Thyroglobulin Abs and these results all came back normal.
As people have asked about these test results they are here for information
Ferritin 28 ug/L (normal range 11-307)
Serum Vit D3 level 71.5 nmol/L (normal range 50-)
Parathyroid hormone 2.9 pmol/L (normal range 1.3-9.3)
Prolactin 480 mU/L (normal range 0-700)
Cortisol 337 nmol/L - morning range 185-624
Thyroglobulin just says "normal, no action", no figures are given
I thought I was getting a T3 test as well, but there's no sign of any results.
My GP has not called me back for another appointment and has said in the message that the results are not very abnormal, implying that I should just live with it. So I'm now wondering what on earth I should do as there is obviously something going on with my bloods (especially with the TPO antibodies). Should I ask to be referred to an endocrinologist, or get a second opinion?
I've made another appointment, but this isn't until 30th August. Meanwhile, I would really welcome people's advice on where I should go next with this, because despite having reduced my hours at work, I'm still really struggling and I'm just utterly exhausted, unable to do the things I normally love doing, so I'm just sitting or lying around feeling cold and miserable.
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Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Hi, thanks for replying again, sorry not to have got back to you earlier, I've been in a work meeting all morning.
I'm not vegan or vegetarian, I'm perimenopausal at 51 and I am on the highest dose estrogen patch allowed by UK guidelines with a mirena IUS for progesterone
“The GP messaged me to say that the low T4 could be because of taking biotin in multivitamins”
It is often noted by lab that high doses of biotin can interfere with results. Is is mean as a possible explanation for highly unusual / unexpected results. The next step being:
1) ensure patient has ceased taking biotin containing supplement
2) using a different lab to test results. It is not intended to excuse any abnormal result. As you aren’t taking biotin this is worryingly dismissive of GP.
You have 2 under-range FT4 - not acknowledging this is inexcusable. You should be started on replacement. Can you see another GP as practice? Some GPs focus on TSH.
Parathyroid & thyroid are located closes but have very separate functions.
Parathyroid hormone is very rarely tested, usually only if calcium is abnormal 2x and the test draw sample has to be carried out close the lab where sample is processed.
Could you add the results & ranges.
Thyroglob-Christies? Not come across this, but Thyroglobulin Antibodies are tested along side TPO antibodies.
Positive TPO shows that your thyroid is being affected by autoimmune, this also supports you starting replacement.
Ask for folate, ferritin, B12 & vitamin D be tested. Hypothyroid cause low nutrients and this can also make TSH appear low.
Many use private options is GP / lab refuse to test.
Check out Sally Jacks you tube she is very good on Ferritin and anemia. 28 is not good. It is an eye opener. I get iron infusions at 50 the range is too big.
Will see if I can get her to listen! I am taking my husband to help me advocate for myself as I don't feel like I'm being listened to, and that the GP is thinking that this is a fibromyalgia diagnosis rather than accepting that something is not right with my thyroid.
Your results look like secondary hypothyroidism- and Hashimoto’s. Your tsh is not rising in line with your falling ft4, and your thyroid is under immune attack.
Please suggest to your doctor that they research secondary hypothyroidism.
Sadly like many others on the forum I know what it's like to be dismissed by a GP that doesn't want to diagnose or acknowledge a below range FT4 and the symptoms you're experiencing.
If you're able to I would ask to see a different GP in your surgery as you may get a more helpful response. If that fails I would write a polite but firm letter to the GP and also to the Practice Manager. Outlining what your symptoms are and suggest what you'd like them to do about it. This helped me to eventually get a referral to an endocrinologist.
Your ferritin level is quite low this can also cause symptoms. Hopefully another more experienced forum member will comment on this for you and make suggestions to help.
Hi Snufkin,Sorry to hear that you are unwell and your GP is not bothered. I had similar symptoms for 6 months. My ferritin levels were similar to your although slightly higher. I started having liver twice weekly and took a supplement. I am much better now. Also, I am seeing a private Endo as I was loosing my mind by the lack of understanding by my GP, infact GPS as I was seeing a different one at each appointment. I was a mess. I wish you all the best
Thankyou so much for your good wishes, I will keep my fingers crossed that I can persuade my GP to act re my thyroid issues as she's desperate to put all this down to long covid/fibromyalgia
The only advice I have is to go to the appointment and push the fact that you’ve had two under range T4 results, this is not subclinical, regardless of the TSH results, an under range T4 is clinical hypothyroidism.
My results were similar, an only just over range TSH with a substantially below the bottom of the range T4. I went back a month later saying I was telling worse, got told it was too early to re-test (got tested for everything else under the sun, surprisingly nothing came of that), eventually got tested again 3 months after first test, only TSH and TPO Ab. Unfortunately I hadn’t found this site then, my TSH had risen and my TPO Ab were 3 times the top of the range. I wasn’t contacted by the doc surgery about what to do next, thought maybe everything was as expected. It’s only the last month or so that I’ve found a note the doc wrote on my notes saying ….”TSH mildly elevated but may not be of clinical significance. Provided patient is asymptomatic repeat in one year.” As you can guess with a below range T4 I was feeling awful!
So the advice is to keep that appointment, because even with a patient they hadn’t EVER seen before (we’d moved and changed surgeries when the youngest was 2, the kids had been, I’d been healthy for the last 20 years) they didn’t make the connection or sufficient notes to say that I was feeling seriously unwell! You need to be your own advocate.
Thankyou so much for replying, hearing other people's stories makes me feel less alone and that there is a way forward on this. I'm going to be taking my husband with me to the next appointment to help me advocate for myself as I feel like I'm not being heard and that the GP wants to make this a fibromyalgia/long covid diagnosis rather than looking at it as being thyroid
It suspiciously looks like Secondary Hypothyroidism. You should get a referral to see an Endocrinologist. I would print out the NICE CKS information on Hypothyroidism, digest it and then you can ask the GP why you aren't being referred. GPs are so used to managing Hypothyroidism by TSH alone, the rare Secondary Hypothyroidism isn't usually on their radar. The treatment will be the same if you are diagnosed but you'll need all your pituitary hormones checking, a MRI scan with contrast, and a stimulation test to check your cortisol release.
I know you’ve had lots of great advice already, but I thought I’d chip in.
I would call your GP and tell the receptionist that you have had to cut your work hours as you feel so bad, please could they bring the appointment forward? Explain that you’ve been reading around the subject and would really like to see if thyroxine can make a difference since your levels are out.
Sometimes I don’t think they realise how much your quality of life is suffering and we need to tell them.
Thankyou so much, I think I will do this when I get a chance tomorrow as you're right, my quality of life is really suffering (and my poor husband's is too because of it)
it's from the latest consensus statement from leading endocrinologists ~on the subject of how they should PROVE a diagnosis of OVERT hypothyroidism is valid ~ (before they are allowed to prescribe a trial of T3 to a patient with remaining symptoms)
Note .. it does not say OVERT hypothyroidism needs High TSH and Low fT4 ... it clearly says "and /OR".
So.... a Low fT4 in isolation does count as OVERT hypothyroidism' as far as the top endocrinologists are concerned, in their most recent paper .. so who is a GP to argue with them ?
if your GP is unwilling/ unable to take responsibility for starting a trial of levo based only on low fT4 without high TSH, then they should follow the NICE guidelines for suspected Secondary Hypothyroidism and refer you to Endocrinology for investigation for that.
~ Primary hypothyroidism is a problem with the thyroid itself .
~ SECONDARY hypothyroidism is a problem with the pituitary gland not making enough Thyroid Stimulating Hormone to ask the the thyroid to work hard enough
so , yes he's correct , your fT4 is 'only a tiny bit under range' ... so i can understand the reluctance to panic about it just yet, from the GP's perspective ..... but telling you "it might be inaccurate because of biotin" is appallingly dismissive given the effect on your ability to work when you've already told them you don't use any biotin . and this is now the second time the fT4 is under range. ........ ask him if he'd be happy with that explanation if HE was so unwell he was persistently unable to fulfil his hours at work ?
3. Before considering a trial of liothyronine, we recommend confirming that a diagnosis of primary hypothyroidism is substantiated (documented TSH ≥10 mU/L; and/orlow FT4 pretreatment with thyroid replacement hormones) If a diagnosis of OVERT hypothyroidism cannot be confirmed, consider a trial without levothyroxine with a repeat serum TSH after 6 weeks."
the NICE guideline document for Diagnosis and Management of Thyroid Disease says very little about Secondary Hypothyroidism , other than to advise GP to test fT4 as well as TSH in cases where Secondary Hypothyroidism is suspected,
but ask your GP to seriously consider Secondary Hypothyroidism in your case ~ there is more detail to discuss with GP in this NHS document :
N.I.C.E Clinical Knowledge Summary for Hypothyroidism :
~ Secondary hypothyroidism is a condition where TSH levels are inappropriately low or normal (or rarely raised), but FT4 is below the normal reference range.
Management of a person with overt hypothyroidism involves:
~ Arranging urgent referral to an endocrinologist if secondary hypothyroidism is suspected.
Assessment:
~ Suspect a diagnosis of secondary hypothyroidism if clinical features are suggestive and TSH levels are inappropriately low (may be normal), but FT4 is below the normal reference range. Note: check both TSH and FT4 levels in these cases when arranging initial tests
Differential diagnosis:
(note* this section on differential diagnosis , and Non thyroidal illness ,it means if you are unwell with something else then thyroid tests cannot be relied on for diagnosis of primary hypothyroidism or secondary hypothyroidism )
Thankyou so much for all this information. At least I'll be better armed. I'm bringing my husband with me to the next appointment so I'll get him to read this as well.
just seen you've already had some tests done re, secondary hypo/ pituitary issue
ie. a prolactin test .
cortisol test
(the parathyroid test isn't anything to do with investigating the pituitary , not as far as i know anyway, and thyroglobulin test isn't either )
i'm not sure when /if they consider secondary hypothyroidism if all other pituitary tests are normal . but i don;t know much about what is necessary for pituitary testing
hang on .... i'll try to find a really useful letter a bloke on here wrote last year that helped get him a secondary hypo diagnosis and treatment...... might take me a while.
When I got re married and got a new Doctor, he did a blood test then called me to come back. I felt ok, tired from commuting 150 miles every week end for 5 months before getting married. I knew nothing about under active thyroid. The nurse and Doctor told me if I did not take Levothyroxine I would be very ill. So since then 18 years I have been on 125mg, at first I had blood test every few weeks, but now I get one once a year. I feel fine on the dose I am taking.
snufkin ~ there is no law that says you can't have "two things a bit wrong at any one time" .. cars can get two problems at once making them hard to diagnose .....and so can humans .
no reason you can't have a problem with your pituitary not making appropriate amount oof TSH when your fT4 is low AND at the same time, have some autoimmune damage to your thyroid contributing to the low T4 levels .
Taking megadoses of Biotin (~20 milligrams/day) will cause the TSH to be suppressed and the FT4 and FT3 to appear elevated in lab testing. It's appropriately named pseudohyperthyroidism.
"Is there something you're afraid might happen if you gave me a trial of thyroid medication?"
Offer to monitor three of the four vital signs (blood pressure, heart rate and body temperature), as well as symptoms of priority (to you) like fatigue and anything else that would be considered by anyone with a stethoscope as markers of hypothyroidism or overstimulation.
TSH may not be a good marker for adequate thyroid hormone replacement therapy
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