Longstanding hypothyroid, with now very low TSH - Thyroid UK

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Longstanding hypothyroid, with now very low TSH

Jaspersas profile image
19 Replies

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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19 Replies
humanbean profile image
humanbean

I've had hypothyroidism for 30+ years.

Serum TSH level was 0.07 mu/L [0.35 - 4.94]

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.

helvella profile image
helvellaAdministratorThyroid UK

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.

Jaydee1507 profile image
Jaydee1507Administrator

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.

Jaspersas profile image
Jaspersas

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:

Serum vitamin B12 level 308 ng/L [187.0 - 883.0]

Serum folate level 2.9 ug/L [3.1 - 20.5]; Below low reference limit

Serum ferritin level 12 ug/L [23.0 - 300.0]

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.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Jaspersas

The way this group works is that someone only gets a notification if you use the reply button directly below their response.

Alternatively you can tag members by using @membersname humanbean

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.

cytoplan.co.uk/vitamin-b12-...

amazon.co.uk/Better-You-Boo...

B complex suggestions: Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

helvella.blogspot.com/p/hel...

B complex comparison spreadsheet:

healthunlocked.com/thyroidu...

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?

Many members do well with this heme iron product:

threearrowsnutra.com/en-uk/...

You shouldnt have to resign yourself to a life of iron deficiency anaemia which would be miserable.

Jaspersas profile image
Jaspersas in reply to Jaydee1507

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.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Jaspersas

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.

Jaspersas profile image
Jaspersas

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. 😒

Sparklingsunshine profile image
Sparklingsunshine in reply to Jaspersas

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.

Jaspersas profile image
Jaspersas in reply to Sparklingsunshine

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.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Jaspersas

Give it a few days and if they don;t get in touch then call them again and chase them up.

If you could answer the questions I asked we could help you further.

SlowDragon profile image
SlowDragonAdministrator

Serum vitamin B12 level 308 ng/L [187.0 - 883.0]

Serum folate level 2.9 ug/L [3.1 - 20.5]; Below low reference limit

Serum ferritin level 12 ug/L [23.0 - 300.0]

What vitamin supplements do you take routinely

B12 is far too low

Folate is deficient

Ferritin is extremely deficient

Hardly surprising TSH is low

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

Your ferritin is terrible

Are you pre or post menopause

Jaspersas profile image
Jaspersas in reply to SlowDragon

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.

Here is my latest Full blood count:

Total white blood count 4.8 10*9/L [4.0 - 10.0]

Red blood cell count 4.43 10*12/L [3.8 - 4.8]

Haemoglobin concentration 116 g/L [120.0 - 150.0]; Below low reference limit

Haematocrit 0.351 [0.36 - 0.46]; Below low reference limit

Mean cell volume 79 fL [83.0 - 101.0]; Below low reference limit

Mean cell haemoglobin level 26.2 pg [27.0 - 32.0]; Below low reference limit

Platelet count - observation 240 10*9/L [150.0 - 410.0]

Neutrophil count 2.20 10*9/L [2.0 - 7.0]

Lymphocyte count 1.64 10*9/L [1.0 - 3.0]

Monocyte count - observation 0.51 10*9/L [0.2 - 1.0]

Eosinophil count - observation 0.38 10*9/L [0.02 - 0.5]

Basophil count 0.06 10*9/L [0.0 - 0.1]

I'm actually not as anaemic as I usually am. My worst reading was 8.4 in old money, now 84 I guess.

Thank you for all of the helpful links you have provided. I will read them all now. 😊

1tuppence profile image
1tuppence in reply to SlowDragon

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.

SlowDragon profile image
SlowDragonAdministrator in reply to 1tuppence

1tuppence

Get full thyroid and vitamin testing yourself

Test early morning, last dose levothyroxine 24 hours before test

Are you on T3 as well?

Operation could have significantly reduced your B12

SlowDragon profile image
SlowDragonAdministrator

GP should be treating your anaemia

What have they prescribed

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

dailyiron.net

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.

SlowDragon profile image
SlowDragonAdministrator

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

NICE guidelines on B12 and testing

healthunlocked.com/redirect...

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

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

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 and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid supplements

thyroidpharmacist.com/artic...

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 5-7 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) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

janeroar profile image
janeroar

The Merina coil reduces heavy periods significantly in most women.

SlowDragon profile image
SlowDragonAdministrator

I've got IBS and consequently get a lot of diarrhoea which probably contributes to my poor absorption of micronutrients

strongly recommend trialing strictly gluten free diet

presumably your hypothyroidism is autoimmune?

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

nice.org.uk/guidance/ng20/c...

1.1 Recognition of coeliac disease

1.1.1

Offer serological testing for coeliac disease to:

people with any of the following:

persistent unexplained abdominal or gastrointestinal symptoms

faltering growth

prolonged fatigue

unexpected weight loss

severe or persistent mouth ulcers

unexplained iron, vitamin B12 or folate deficiency

type 1 diabetes, at diagnosis

autoimmune thyroid disease, at diagnosis

irritable bowel syndrome (in adults)

first‑degree relatives of people with coeliac disease.

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

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

nuclmed.gr/wp/wp-content/up...

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

restartmed.com/hashimotos-g...

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

Post discussing gluten

healthunlocked.com/thyroidu...

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