I don’t know what to do-
My recent T4 level was 11, and my TSH 1.31.
I’ve been experiencing hypothyroid symptoms for over 5 years. I have almost all of the symptoms:
Weight gain, severe sensitivity to cold, severe fatigue, dry skin, irregular menstrual cycles, brain fog, no sex drive, muscle aches
My GP said they cannot test for T3 and won’t do a referral to endocrinologist as my TSH is ‘normal’ (even though it is on the low side).
Any advice on what to do? I live in london
welcome to the forum
So you are not currently diagnosed or on any thyroid medication at all?
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Post all about what time of day to test
healthunlocked.com/thyroidu...
Testing options and includes money off codes for private testing
Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Link about thyroid blood tests
thyroiduk.org/testing/thyro...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/signs-and-sym...
Tips on how to do DIY finger prick test
support.medichecks.com/hc/e...
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
Thank you! Yes currently I have no diagnosis. I did have vitamin D, folate, ferritin and B12 tested.
My B12 and folate are normal. My vitamin D was insufficient but not deficient, and my ferritin very low. But I didn’t think that is thyroid related as I’m a female and struggle with heavy periods.
Can you add actual results and ranges on vitamin levels and Ft4
Low vitamin levels will tend to lower TSH, especially low iron/ferritin
Heavy periods will obviously tend to result in low iron/ferritin, but low iron/ferritin will often result in heavy periods
Low vitamin levels are extremely common as a result of low thyroid levels as this leads to low stomach acid and poor nutrient absorption
B12: 731 pg/mL - normal range is 197 - 771 pg/mL
Folate: 5.6 ng/mL - normal range is 2.90 - 26.80 ng/mL
Serum ferritin: 9 ug/mL - normal range is 13 - 150 ug/mL
Vitamin D: 40 mmol/L - normal range is 25-120 nmol/L. Insufficient considered as 25-50 nmol/L
Serum free T4 level: 11 pmol/L Normal range is 12.60 - 21 pmol/L
Serum TSH: 1.31 mIU/L Normal range is 0.51 - 4.30 mIU/L
These tests were done in the afternoon, I was not fasting.
what vitamin supplements are you currently taking
Ferritin is extremely deficient
GP should do full iron panel test for anaemia
Are you vegetarian or vegan
Vitamin D insufficient
Folate is low
Only add one supplement at a time then wait 10-14 days before adding another
Starting with vitamin D, then magnesium, then folate
Meanwhile increasing iron rich foods in your diet
Retest thyroid and vitamin levels in 2 months
ALWAYS test thyroid levels early morning
low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance
Difference between folate and folic acid
healthline.com/nutrition/fo...
B vitamins best taken after breakfast
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
Post discussing different B complex
healthunlocked.com/thyroidu...
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Low vitamin D
GP should prescribe 1600iu everyday for 6 months
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
GP will often only prescribe to bring vitamin D levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol or even 80nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
But, improving to around 80nmol or 100nmol by self supplementing may be better
pubmed.ncbi.nlm.nih.gov/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Test twice yearly when supplementing
Can test via NHS private testing service
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.
There’s a version made that also contains vitamin K2 Mk7.
One spray = 1000iu
amazon.co.uk/BetterYou-Dlux...
It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average
Vitamin D and thyroid disease
grassrootshealth.net/blog/t...
Vitamin D may prevent Autoimmune disease
newscientist.com/article/23...
Web links about taking important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Recipe ideas
bbc.co.uk/food/articles/mag...
Interesting article by Dr Malcolm Kendrick on magnesium
drmalcolmkendrick.org/categ...
Vitamin K2 mk7
Serum ferritin: 9 ug/mL - normal range is 13 - 150 ug/mL
cks.nice.org.uk/topics/anae...
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
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Stop iron supplements 5-7 days before testing
Medichecks iron panel test
medichecks.com/products/iro...
Look at increasing iron rich foods in diet
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
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
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.
healthunlocked.com/thyroidu...
Posts discussing Three Arrows as very effective supplement
Great replies from @FallingInReverse
re ferritin and Three arrows
healthunlocked.com/thyroidu......
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Great reply by FallingInReverse
healthunlocked.com/thyroidu...
Iron patches
healthunlocked.com/thyroidu...
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
Good iron but low ferritin
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
healthunlocked.com/thyroidu...
Shellfish and Mussels are excellent source of iron
healthline.com/nutrition/he...
Iron deficiency without anaemia
healthunlocked.com/thyroidu...
Ferritin over 100 to alleviate symptoms
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Great research article discussing similar…..ferritin over 100 often necessary
ncbi.nlm.nih.gov/pmc/articl...
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Really interesting talk on YouTube, link in reply by Humanbean discussing both iron deficiency and towards end how inflammation can also be an issue
healthunlocked.com/thyroidu...
Inflammation affecting ferritin
healthunlocked.com/thyroidu...
Updated reference ranges for top of ferritin range depending upon age
healthunlocked.com/thyroidu...
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
The problem with private testing, I find, is that GP’s just ignore it! They are only interested in TSH, high or low. If it’s low they want to reduce Levothyroxine and they ignore T3 totally. I assume it is ignorance as most seem to know little to nothing about Hypothyroidism. I printed all the evidence provided by this forum regarding low TSH when taking levothyroxine and it was given only a cursory glance by the GP (I had to wait two weeks for my appointment) but at least he agreed to reduce my blood tests to yearly and for the results to be referred to him rather than the pharmacist at the practice, who now seems to get involved in these things. When I collected my prescription from Boots the other day they offered me a blood test, which I assume was because it is over 6 months since my last one! I dread them because I know they will tell me my TSH is too low, but I feel ok, so just leave me alone!!!
But private testing means you can self manage vitamin levels
And obviously essential for you to know what Ft4 and Ft3 levels are, especially if TSH is extremely low or suppressed
I agree, but just saying GP’s not heed it.
That's most likely Secondary Hypothyroidism which is usually caused by a benign tumor or cyst in the pituitary gland. It needs an Endocrinologist to diagnose it and check for other deficient or excess hormones. GP's can't routinely test FT3. I would see the GP again and explain your concerns about secondary hypothyroidism and see if he will test the other pituitary related hormones: 9am Cortisol, TSH, FT4, IGF-1, Prolactin, LH, FSH and the sex hormones.
With Secondary Hypothyroidism, TSH becomes irrelevant once diagnosed but in primary hypothyroidism it's used to check and adjust treatment/dose. Ultimately the treatment is the same plus correction of any other hormones.
I was misdiagnosed by my GP with primary hypothyroidism until I pointed out the interpretation of thyroid function tests.
If you do have a pituitary issue you'll have to advocate for yourself. Even some Endocrinologists don't know enough to adequately treat pituitary patients.
Thank you so much! I also agree that it could be secondary hypothyroidism. However when I said that to my GP they said it was rare and I don’t need to worry as my TSH is in range. Luckily for me my mum is a doctor and flagged up my T4 and TSH results. I just had another blood test to see if I get similar results. If I do, I will follow your advice and speak to the GP about testing other hormones. Out of interest, would you expect for my FSH, prolactin and LH to be higher or lower?
'when I said that to my GP they said it was rare and I don’t need to worry '
I so wish doctors wouldn't say this. The implication is that because it's 'rare', you can't have it. But someone has to have it for it to have ever even become a recognised disease/disorder in the first place!
I have a 'rare' condition (not thyroid), and it took me a lot of effort, determination and persistence to get the relevant referral and eventually the right diagnosis. GP at the time kept insisting I couldn't have it because it was classified as 'rare'.
Being hypothyroid can cause prolactin to be elevated and raised prolactin causes suppression of LH and FSH but I'm not sure by how much.
I'm in the same position as you. My T4 just about inside range and TSH 'normal,' around 2. Loads of symptoms for years.Secondary (central) hypothyroidism is supposed to be quite rare. I really don't think it is, based on the number of people on here with the exact same issues as you and me - low T4, in range TSH.
Was speaking with a friend's daughter, who is studying medicine at the moment, and I asked her what she was being taught about secondary/ central hypothyroidism. She said that they are taught that it doesn't exist and the blood tests just need to be repeated!! 😖
Low TSH along side low FT4 (& FT3 If tested) is not grounds to diagnose a pituitary tumour / central hypothyroidism.
TSH can be unreliable for a multitude of causes, low nutrients can lower TSH. Testing later in day can given lower daily TSH. Fluctuations in thyroid levels can show a low TSH if levels were previously higher. Prolonged higher levels at a previous time (even years prior) can result in permanent down regulation of TSH.
Central hypothyroidism may later become a potential consideration to raise with Doctor if TSH remains low & frees are low, but I’d suggest first step should be to test FT3 & thyroid antibodies.
The only way of correctly diagnosing a pituitary tumor or mass is a pituitary focused MRI with contrast. The NICE CKS states: -
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.
I have no medical qualifications but as someone living with Hypopituitarism as a result of a pituitary tumor, which includes Secondary Hypothyroidism, I have read extensively on the subject and had many discussions with my Specialist Endocrinologist.
so sorry to hear this. No time to write now but you could read my posts as had similar. Why can’t doctors be guided by HOW YOU FEEL not blood tests? I just asked to be referred to endo but if it helps get Medichecks private blood tests?
Elevated TSH, T4 low, T3 normal
Suppressed TSH, low T3 and normal T4
GP asked for T3 and T4 test, lab done repeat TSH and T4!!!!
Low T4, normal T3 and TSH
