I've had hypothyroidism for 30+ years. I've only ever seen an endocrinologist once, and that was when I was first diagnosed. Since then I've had the yearly TSH check and it's always been mostly within normal limits, this despite my still having every symptom of hypothyroidism.
Last week I had a well woman check which found polyps in my cervix and resulted in my doctor telling me that he was putting me on a fast track cancer pathway check, where I should expect to have a Gynae appointment within two weeks. He also arranged for me to have many many blood test, most of which have turned out to be slightly abnormal, but it was the TSH result that surprised me the most, my Serum TSH level was 0.07 mu/L [0.35 - 4.94]. Does this mean I am over medicated? I've been on 125mcg for the about the last five years, before that I was on 100mcg.
This is the second time I've needed your advice and value any help that you can give me.
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Jaspersas
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I've been on 125mcg for the about the last five years, before that I was on 100mcg.
As we age it is perfectly possible for the pituitary to start being sluggish in terms of producing TSH. Doctors pretend that TSH is a thyroid hormone but it is actually produced by the pituitary. Another possibility is that a virus or a particularly stressful time could change things for a few weeks or months.
Have you ever had TSH, Free T4 and Free T3 tested all at the same time? If yes, what were those results? A TSH alone is not informative. Many of us on this forum pay for private testing, which doesn't require paying to see a doctor. Depending on what testing you choose, you might only need a finger-prick blood sample - the companies selling the tests supply the lancets you need to prick your fingers, once you've paid for the test.
Do bear in mind that it is currently (at least theoretically ) summer.
Many feel they need slightly less levothyroxine in the summer. However, how you define summer (dates? weather? daylight hours?) is not agreed or obvious. And the adjustment needed is likely to be small. Maybe 12.5 micrograms. But, if your dose is fairly low, no adjustment might be needed.
TSH varies throughout the day and is lowest at 9am or earlier. What time of day was your test?
To really know whats happening with your thyroid levels you need 3 tests - TSH, FT4 & FT3. The NHS doesnt really understand this and often insists on going by TSH alone which is completely wrong.
Suggest you get your own tests run privately to include TSH, FT4 & FT3 plus key vitamins ferritin, folate, B12 & D3.
Once you have those results start a new post for members to comment.
Meantime, refuse to change dose if you dont feel its the right thing to do until you get the other tests done.
Hi, my blood test was at 10.20am. After the advice routinely given on here, I hadn't taken my usual morning dose before the test, so it had been more than 24 hours since my last dose of levothyroxine. My GP already did some of those tests:
I've had iron deficiency anaemia most of my life due to very heavy periods. I already take iron and B12 every day, but it looks like I need folic acid too.
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Is your GP now prescribing folic acid? They should do but if not then over the counter supplements are available.
Sometimes low vitamins can lower TSH, particularly low B12 and although yours looks well within the reference range its actually quite low as the range is too wide and cut off point too low.
Which supplement and what strength are you taking?
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.
All the recommended supplements contain methylfolate which is better and more easily used by our body than folic acid.
What iron supplement are you taking and do you also take it 4 hours away from your Levo (it affects absorption of Levo) and with orange juice to help it absorb better?
Hi Jaydee. I'm a carnivore, but tend to eat more chicken as my partner doesn't like beef. I think I'll have to start buying myself steaks. 😃
I don't know whether they've ever checked my folate levels, (nor if I'd been within limits if they had), but I do know I've never been prescribed folic acid. I am prescribed Ferrous Fumarate 5mg and take Neuromind Plus DHA, which is a multivitamin containing 100mcg B12.
I've got IBS and consequently get a lot of diarrhoea which probably contributes to my poor absorption of micronutrients
Thank you for all the information you have kindly linked. I am going to read them now and buy your recommended products.
Multivitamins arent recommended in this group for a number of reasons including being too lower dose of cheap, inactive ingredients, containing iodine which isnt recommended for hypo people and iron which will prevent you absorbing everything thats in it.
Its more effective to test certain levels and supplement individually with quality high dose supplements.
Buy some chicken liver pate and have that for lunch twice a week s well as adding in red meat.
100mcg B12 is actually a low dose. The supplements recommended in this group have around 400mcgs B12 in the active form of methylcobalmin along with the active form of folate - methylfolate as opposed to folic acid which many people cannot use well.
IBS is common when not optimally replaced with thyroid hormone.
Hello. You have received lots of good advice already, but thought I'd just chip in to say that 5mg ferrous fumarate is a very low dose. I am prescribed 305mg and supposed to take it twice a day (I usually only manage once, because of the need to keep it away from levothyroxine).
Sorry, I don't know where my head was, I'm on 210mg once a day. I take it most days but leave it off if I'm particularly constipated. Gosh, we talk about everything here. 😳
Your ferritin level is terrible. You need something better the ferrous fumigate. I think Jaydee mention Three Arrows Iron above with a link. Try that. Easier on the stomach and you can take a lot of it. Have to import it from the US, but I find it worth the effort.
Thank you for all the replies. I looked up all my blood results on Systmonline, which advised me to contact GP as they were abnormal. I rang the surgery today to tell them I needed to speak to my GP because I'd got some abnormal blood results. The woman I spoke to told me that the doctor would contact me after the person who analyses the blood test results tells him to, which seems like a crazy system. I can see that I've got abnormal results, Systmonline tells me to contact the GP, but the GP won't contact me because he hasn't been told to yet. 😒
In my experience unless its something very serious or urgent then they can take their time to contact you and even if by their own ranges you have abnormal results, they will sometimes dismiss them as clinically unimportant.
I find doctors are quite odd, sometimes they will completely ignore an abnormal result or say it doesnt matter, which begs the question of why they have ranges in the first place if they only pay lip service to them.
I suppose I was expecting a call because of the way he stressed the urgency of my gynae appt. I saw the practice nurse last Thursday morning and she told me that because of the examination she gave me, that I would be getting referred for an urgent appointment with a Gynaecologist, then unexpectedly late Thursday on afternoon, my GP rang and told me that he was sending the request off to catch the post and that 'my one job was to contact him if I hadn't received an appointment by this coming Thursday'. He said I should see someone within 2 weeks of his request.
To be able to process levothyroxine (ft4) into active hormone (ft3) we MUST have GOOD vitamin levels
Poor conversion of Ft4 to Ft3 results in higher Ft4 and lower Ft3 ….this results in lower TSH ….but ongoing hypo symptoms
No vitamin D test results ?
Many, many thyroid patients find they need to supplement daily and continuously vitamin D, and vitamin B complex in mornings and separate magnesium supplement in afternoon or evening
Some need to also take a separate B12, especially initially or if vegetarian or vegan ongoing
Hi SlowDragon. Literally as soon as I started my periods, I became iron deficient due to very heavy periods. I've been checked several times over the years for fibroids, and never had them until an ultrasound detected them last year, but even then they said they were small and unlikely to cause heavy periods. So my heavy periods were idiopathic. Even when I was taking HRT, which they have just stopped because I was apparently on the wrong type. I was on the alternating pills where you still had the bleed, I should have been on a constant oestrogen and progesterone pill.
Just in regard to your HRT, can I suggest that you challenge your GP to update it to estrogen patches/ gel and bioidentical progesterone (ustrogestan or Mirena coil, assuming you have a womb) rather than tablet form - they are very old tech and potentially interfere with your Thyroid meds because they compete for binding sites.
I’d also really recommend checking out Louise Newson’s Balance app for more info just generally on HRT. I’ve found it incredibly helpful and informative.
Also can’t recommend the advice more highly here on this forum - you’re in good hands!
Hi Meno, thank you for all of your advice. My GP actually admitted to me in last week's phone call, that I'd been on the wrong HRT. The nurse I saw last Thursday, who told me to stop taking the pills straight away, said that once I'd got the all clear from gynae I would be taking a progesterone pill and oestrogen gel. Unfortunately I can't have the patches due to my dermographism, which caused wheals. When I tried them before I ended up looking like a patchwork quilt. 😲
Hello SlowDragon, your response above has caught my eye.
Poor conversion of Ft4 to Ft3 results in higher Ft4 and lower Ft3 ….this results in lower TSH ….but ongoing hypo symptoms...
Is this knowledge from experience or is there a paper/papers supporting this?
After a recent operation the anaesthetist has written to my GP (copy to me for my information) stating that due to my results...as similar to your quote.... I am hyperthyroid.
I have absolutely no symptoms of being hyperthyroid.
As I shall undoubtedly be challenged re my dose now, I'd like to be prepared to argue my case. Thank you.
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
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.
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.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
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 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
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) and continue separate B12
Post discussing how biotin can affect test results
Hi Jane, I'm hoping I won't have any more periods once I change to different HRT. I've never actually ever stopped having periods, I've had the menopause without the pause. I started HRT because I was having terrible flushes, but I was on Femoston and still had the bleed period when I switched between the oestrogen only and the oestrogen and progesterone pills.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances.
Most common by far is gluten.
Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
hello Jaspersas , I recently took a private blood tests because I had symptoms of being badly hypothyroid.
Learnt i had Hashimotos (Ords) with off scale both antibodies and I deduce poor conversion of T4 to T3 as my tsh reading is supressed and T4 is high over range. Definitely not overmedicated.
Hi Wheat, like you I still have every symptom of an underactive thyoid, so poor conversion makes sense for me too. Hopefully I will be referred to an Endocrinologist who will be able to sort me out.
hi jasperas - like you I had thyroxine (300mcg daily) over 30 yrs and went 15 yrs without seeing an endocrinologist or having blood tests at GP. Dosage reduction during pregnancy late 30s when new GP started to sort out the mess. Then levels went into freefall after menopause with results suggesting over medication but accompanied by clinical symptoms of hypothyroidism. Have been on t3 for several years in addition to t4 and (mostly) feel normal. Best wishes for resolving this based on advice from others.
Hi bikebabe, I am so glad most of your issues have been resolved. I've thought for years I might need T3 owing to my ongoing syptoms, but GP wouldn't refer me to anyone because my TSH was always in range. I'd love to have seen a private endocrinologist but couldn't afford it.
The good news, I've received my gynae appointment. I'm seeing a consultant next Monday. He's a man, I'd have preferred a female doctor and am hoping there is a female registrar on his team. I know he's seen it all before, but still...
The not so good news, I've still not heard from my GP to discuss all of my blood results. I'll ring tomorrow if I've still not heard as I wouldn't have thought it should take this long for abnormal blood tests to be flagged up. 😒
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