help / thyroid results: I just had my thyroid... - Thyroid UK

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help / thyroid results

kitcat72 profile image
21 Replies

I just had my thyroid hormones tested again. I’ve complained for years about hypothyroid symptoms but I never seem to get any help. I get brushed off that it’s all within normal ranges despite this list of symptoms:

* Skin temp 26-36 degrees, higher temps at night in bed, lower end temps during the day.

* Poor sleep, wake constantly, tired on waking. Improved a little with LDN.

* Prolonged muscle twitches that go on for hours

* Cold hands and feet. So bad over last year that had constant chilblains on toes for a year (including during summer despite wearing socks, lowering water temp in shower) until I started LDN. Suspect LDN has modulated an immune system response and that chilblains are an immune related symptom. Have to use hot water bottles in winter or I can’t sleep because of being cold / cold feet.

* Cold intolerant, often find environments very cold even in summer or wear lots of clothing when others in T-shirts, heavy blankets on bed during summer. Other people often comment about the amount of clothing I wear or that the room is hot but I don’t feel it. Currently 19.5 degrees and I’m sitting in a sweatshirt and puffer jacket.

* Itchy dry skin, bumpy skin on face, facial rosacea which seems to be in my case part of an autoimmune disorder, dry skin peeling around nails. Rosacea erythema improved with LDN. (I do not have a gluten sensitivity/ celiac although dna testing indicates possible increased risk but only with some supportive test evidence).

* Hypersensitivity to strong smells, chemicals, perfumes (went away with LDN)

* Outer third right eyebrow missing, other side sparse

* Restless legs

* Hoarse voice comes and goes, usually common if I do more than a very small amount of talking or when talking in the morning but can happen any time.

* Heart palpitations, significant thumping in chest and throat, checked for heart issues with nothing found. LDN has significantly reduced the thumping sensation but still getting them, possibly indicating immune system related.

* Little to no weight loss despite exercising. only when eating 1200 cal a day do I loose weight which then plateaus obviously because it’s not sustainable, I’m then so ravenous, brain fails to recognise satiety, I put it all back on

* Low BP 110/76 - checked a few times over last year nurses previously commented on it being low, then rephrase as “healthy low” despite 33% body fat / bmi borderline obese. May or may not be related.

* Resting HR in low 50’s despite doing very little cardiovascular type exercise and having 33% body fat

* Occasional unexplained dizziness could be linked to low blood pressure.

* Tired / fatigue. Could go to sleep at 6-7pm every night

* Irregular periods since teens, ceased for two years 2004-2006 no explanation found

* Food sensitivities, feel nausea after consuming food items, supplements, medication. Developed an allergy to mint tooth products in the last 3 years (I think another immune system response). Alcohol intolerance, can’t have more than one drink or I feel ill

* Flaking brittle nails

* Irregular toilet habits, degree of constipation and associated issues

* No libido, was on HRT for a year and was told that would fix it but it never did.

* Easily prone to heatstroke (which can be a symptom of Hashimoto’s).

* Don’t really sweat much during exercise although think this has changed slightly with LDN.

Symptoms Started in teens along with depression, weight gain despite no change in activity, anxiety. Prior to that I could have been almost hyperthyroid, I was very skinny, period onset was late when I was 16 possibly weight related) and has always been irregular from the get go.

Family history of low thyroid function, sister diagnosed (50-75mcg dose) mother is also likely hypothyroid due to metabolic issues but not diagnosed

Genetic testing indicates likelihood of lower thyroid function with good test evidence.

Generally felt awful on a daily basis until I started LDN

Improvement in symptoms from taking LDN leads me to believe that I am being affected by an autoimmune condition

Negative test for lupus a couple of months ago.

Test Results

TSH 1.47 R .27-4.2

Free t3 5.3 R 3.1-6.8

Free thyroxine18.6 R12-22

Thyroglobulin antibodies 12.3

TPO 12.6

folate 8.7 R8.83-60.8

B12 44.8 R37.5-188

Vit D 74.5 R 50-250

Ferritin 33.6 R30-150

Tests were taken before I tried metavive. I was last tested in 2007 on nhs (went to endocrine unit) all within “normal” ranges. I don’t have results

this last set of tests I’ve been told to take folate / b12 / iron as they were low. I was taking a vitamin supplement but had to stop two weeks before the test so I am not surprised they might be low but I don’t believe they’re responsible for symptoms I’ve had for nearly 35 years.

I started taking metvive and within a few of days I already feel better, a shoulder muscle pain issue I’ve had for months is better, I feel stronger and less tired. My skin and rosacea has improved. Eyelashes have stopped being greasy in the morning on waking which is curious

I’m considering ordering prescription items from outside the UK as metavive doesn’t specify dose. Has anyone else had similar experience or issues?

I’m not vegetarian or vegan but I don’t eat a lot of meat. I never eat beef or lamb, I don’t like the taste. I do have a lot of sensitivity issues so things make me feel sick if I eat them alone (like eggs), I can’t just eat 2 or 3 eggs plain or alone. I strength train 4x per week. SPO2 levels are fine in the 90’s

Update - also if I stop strength training for a short period (say a week) and then go back to training I suffer from horrendous DOMs so bad I struggle to walk. I had a week off last week and this week, no pain at all.

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kitcat72
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21 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Was thyroid test early morning?

Please add ranges on Ft4 and Ft3

Presumably this test was BEFORE starting on any thyroid supplements?

this last set of tests I’ve been told to take folate / b12 / iron as they were low.

Please add actual results and ranges for these and vitamin D

kitcat72 profile image
kitcat72 in reply to SlowDragon

Thank you I’ve updated them

SlowDragon profile image
SlowDragonAdministrator in reply to kitcat72

Active B12 below 70 requires further testing unless you are vegetarian or vegan

Request GP test for Pernicious Anaemia

Ideally you should be tested for PA BEFORE starting any B12 or vitamin B complex

Exactly what vitamin supplements are you currently taking

Ferritin is deficient

Any obvious reason for low ferritin, like heavy periods or vegan/vegetarian

See GP for full iron panel test for anaemia

Low ferritin will cause debilitating fatigue

kitcat72 profile image
kitcat72 in reply to SlowDragon

No I don’t have heavy periods. The test was done in the morning. I take a women’s multivitamin. I’m not vegetarian or vegan. I stopped the vitamin two weeks before the test as per the test instructions. I’ve had blood tests before at the GP, never have I been told I have an issue with iron levels. Thank you for the welcome :)

Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and offer recommendations better. Click on your image icon to start.

So when was this test taken? Before or after you started Metavive?

Please add reference ranges for each test as they vary from lab to lab.

It looks like both your thyroid antibodies are negative. This is just one test though and if you retested at a later date its possible one or other or both could be positive as they do fluctuate.

Are you vegan or vegetarian?

What were the vitamin results, with ranges?

Palpitations and restless legs are frequently linked to low ferritin/iron so it will be interesting to see yor vitamin results.

kitcat72 profile image
kitcat72 in reply to Jaydee1507

Thanks I’ve updated my post

Hedgeree profile image
Hedgeree

Hi kitcat72,

Your ferritin is very low in range. I know from my own experience that you can have a lot of symptoms when ferritin is that low particularly tiredness and fatigue.

kitcat72 profile image
kitcat72 in reply to Hedgeree

Thanks it may explain some symptoms but not all, I think? Plus I was taking vitamins before testing but had to stop for the test 2 weeks prior. The symptoms didn’t go away using vitamins

Hedgeree profile image
Hedgeree in reply to kitcat72

Yes though it can often take a long time (many months) to increase ferritin levels.

Something which I'm currently working on myself but more difficult when you don't eat much meat. My hair loss has slowed down so hoping my levels have improved.

SlowDragon has given you some great links to read through.

SlowDragon profile image
SlowDragonAdministrator

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

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

An article that explains why Low ferritin and low thyroid levels are often linked

preventmiscarriage.com/iron...

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

healthunlocked.com/thyroidu...

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...

Excellent article on iron and thyroid

cambridge.org/core/journals...

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...

Ferritin over 100 to alleviate symptoms

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...

Ferritin range on Medichecks

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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. ‘

kitcat72 profile image
kitcat72 in reply to SlowDragon

Thanks for this. I don’t like a lot of red meat and I’ve never liked pate. I can taste the iron, it has a metallic flavour I can’t get past. I do eat dark chocolate! I will look at the links though.

SlowDragon profile image
SlowDragonAdministrator

I was taking a vitamin supplement but had to stop two weeks before the test

Exactly what vitamin supplement

Low B12 symptoms

b12deficiency.info/signs-an...

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

Once you have had further tests for PA via GP if you don’t get prescribed B12 injections

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and 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

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...

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.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

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 currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

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) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

kitcat72 profile image
kitcat72 in reply to SlowDragon

Thanks I will look at those too. Currently on a waiting list to swap surgeries as I keep seeing the same clown who doesn’t listen, is belittling and rude. I’m reluctant to go to the clinic because of him.

It’s the beauty pie perfect daily

SlowDragon profile image
SlowDragonAdministrator in reply to kitcat72

ask the receptionist/practice manager if there’s a GP at current practice (and again at new one) if there’s a GP who has a particular interest in gut issues/malabsorption/low B12 and low iron or thyroid issues

Request ultrasound scan of thyroid too

kitcat72 profile image
kitcat72 in reply to SlowDragon

I’ll try but usually I don’t get a choice in who I see and it’s usually the same guy who has “clinical work to be getting on with” and I’m just a trivial annoyance. Would they agree to an ultrasound if tests are “normal”?

Gingernut44 profile image
Gingernut44 in reply to kitcat72

I’ve just looked at the ingredients of your Beauty Pie Perfect Daily and it has iodine in it which is a no no for thyroid disorders. The others are in such a mix that you probably won’t be absorbing any of them. You need to take specific supplements for your needs and ditch the multi vitamin.

SlowDragon profile image
SlowDragonAdministrator in reply to kitcat72

Definitely avoid any thing with iodine in with suspected thyroid disease

Your B12 and folate both really very low, especially if been taking this multivitamin

beautypie.com/products/mult...

kitcat72 profile image
kitcat72 in reply to SlowDragon

Yes that’s it, I had started taking it for a couple of weeks (usually on and off I’ve taken multi’s but a lot of them make me feel sick or retch / puke so it’s trial and error for me) then stopped for two in preparation for the blood test. Just tried GP for an appointment, all gone today. Told to call back at 8 sharp tomorrow when everyone else is trying to get one 😔 I had read that about iodine.

JAmanda profile image
JAmanda

in my experience low folate can indeed explain a lot if those symptoms. Your thyroid numbers go really look ok. Work on really getting your vits and minerals up and see how you are?

Miffie profile image
Miffie

From personal experience I’d say your symptoms are due to low ferritin/ B12/ folate. These caused me horrendous symptoms. I have been hypothyroid for sixty years and to be honest even taking T3 I can’t get a fT3 results as good as yours is currently. I am inclined to think once you get on top of vitamins you won’t be thinking about a thyroid problem. It’s totally annoying and aggravating when GPs are dismissive and we feel going is waste of time. My current surgery has gone downhill in the last couple of years . Now they remind patients via Facebook, practice newsletters and posters that they are signed up to Livi so we can go online and speak to a random doctor anytime. I am seriously considering that route in future. Go with private testing if need be many on here do so. Good luck

kitcat72 profile image
kitcat72

thanks I’ve ordered separate supplements as suggested. I will see how I go. I get that my results seem “normal” but that doesn’t mean they’re optimal for me. There’s also a possibility if I do have an autoimmune condition that the LDN is regulating antibody levels. Something that the doctor commenting on my test results did not identify. I perhaps should have stopped taking that too. I don’t mind e consults and the use of tech but I just can’t stand this particular man, very time I’ve seen him he’s been dismissive or acts like he knows more than he does (you realise this as soon as he speaks) and the last time he was rude. I get he’s stressed but he has no right to speak to me the way he did.

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