Normal results but still feeling incredibly fat... - Thyroid UK

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Normal results but still feeling incredibly fatigued.

Curiousegg profile image
6 Replies

Hi

A couple of months ago I posted to ask for advice about an upcoming Drs Appointment to discuss subclinical hypothyroid blood test results. I'd been on annual blood tests following a diagnosis of hyperthyroidism in 2013. Carbimazole brought results down and then into hypo, medication stopped and in normal ranges since Jan 2016.

The May results were as follows.

TSH 4.89 (Range 0.2-4.5)

Serum Free T4 10.5 (Range 7-17)

Blood taken midday. No other tests done

On the advice given here when I spoke to my GP I asked if I could be tested for Hashimotos. I was informed that I was tested and was positive back in 2013 ... they just neglected to tell me ...

GP put me onto 50 mg Levothyroxine. I had blood tests taken on Friday last week (8 am, fasting bloods, no Levothyroxine taken)

The results have come back as follows:

TSH 2.97 (Range 0.2-4.5)

Serum free T4 9.8 (Range 7-17)

Vit D 45.6 (Range 50-250)

B12 284 (Range 145-910)

I had a quick call from the GP's surgery to say please take Vit D but no other comments. I have a face to face appointment booked with the GP in a couple of weeks and would welcome any advice as to what I can reasonably ask for in terms of support as I'm still feeling really fatigued. I was diagnosed with CFS in 2015 so I don't know whether the issues I'm feeling are thyroid, CFS or something else related.

Any advice would be very gratefully received.

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6 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Its not uncommon to be wrongly diagnosed with hyperthyroidism when in fact you have the early stages of Hashimoto's. This can often start with a hyper phase and then later progress to hypothyroidism as the thyroid gland is destroyed.

You have tested correctly to show stable blood levels of hormone.

Your TSH is still above 1. Most people feel well when their TSH is at or just under 1.

Your FT4 is low in range so you have plenty of room for a dose increase which you should insist on at your upcoming appointment.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

Did they test any other vitamin levels - ferritin and folate?

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the Better You range of mouth sprays . Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...

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. pernicious-anaemia-society....

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 and your level has reached 500 just continue with the B complex.

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

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

This B complex has all the right vitamins at a not unreasonable cost for 90 days supply(also contains folate). Once B12 is good (over 500) you can stop the stand alone B12 and just continue with the B complex. amazon.co.uk/Liposomal-Soft...

Curiousegg profile image
Curiousegg in reply toJaydee1507

Thank you so much for such a helpful and comprehensive response - and the really useful links too - it can feel utterly overwhelming to know where to start.

I'm neither vegan nor vegetarian - not aware of having many of the symptoms of pernicious anemia - though will be observing more closely now.

I wasn't tested for ferritin (though I had requested that), but was tested for folate:

Folate 18.4 (Range 3 - 20).

Once again thank you so much for your help.

Alison

Jaydee1507 profile image
Jaydee1507Administrator in reply toCuriousegg

Perhaps see if they will run your ferritin next time as if thats low then it will account for some of your fatigue. Also you need ALL vitamins to OPTIMAL to make your levo work well.

Pick one vitamin at a time. Your B12 would be a good one as is so low and may need further investigation. Discuss it with your GP at next appointment.

SlowDragon profile image
SlowDragonAdministrator

Make an appointment with GP

You need next 25mcg dose increase in levothyroxine to 75mcg per day

On levothyroxine the aim is to increase slowly upwards in 25mcg steps until TSH is around one and Ft4 at least over 60-70% through range

FT4: 9.8 pmol/l (Range 7 - 17)

Ft4 is currently only 28.00% through range

Which brand of levothyroxine are you currently taking for 50mcg

Request full iron panel test for anaemia including ferritin

SlowDragon profile image
SlowDragonAdministrator

B12 obviously very low

Do you have Low B12 symptoms

b12deficiency.info/signs-an...

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

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week

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...

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.

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 B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

I was diagnosed with CFS in 2015 so I don't know whether the issues I'm feeling are thyroid, CFS or something else related.

Highly likely this was Hashimoto’s all along

when I spoke to my GP I asked if I could be tested for Hashimotos. I was informed that I was tested and was positive back in 2013 ... they just neglected to tell me ...

Assuming you are not already on strictly gluten free diet ….

Have you now had coeliac blood test via GP

If not, request this is done (as per NICE guidelines) BEFORE trialing strictly gluten free diet

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 or buy test online for under £20, just to rule it out first

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

Hashimoto’s and leaky gut often occur together

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