Help required! : Hi I was diagnosed with under... - Thyroid UK

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Clairey2503 profile image
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Hi I was diagnosed with under active thyroid two years ago and to be honest I have felt terrible ever since! My hairdresser advised me to be checked as my hair loss was severe and breaking off. Doctor confirmed via bloods under active and I am now on 100mg levothyroxine. I still have severe hair loss and now have to wear a wig due to this 😢. I have put on about 2-3 stone since diagnosis even though I eat the same as before and exercise same as before.. I got the advanced Medichecks test and here is the results....

Inflammation 4.36mg/l <5

Ferritin 85ug/l - 13-150

Folate serum 4.4ug/l >3.89

Vitamin b12 79pmol/l >37.5

Vitamin d 32.9nmol/l <50-175

Tsh 1.1mlu/l <0.27-4.22

Free t3 3.68 pmol/l <3.1-6.8

Free thyroxine 16.5pmol/l <12-22

Thyroglobulin antibodies 132kiu/l <115

Thyroid peroxidase 214kiu/l <34

Just need some advice on how to fix especially the weight side as it’s making me really not want to go out and do things and really depressing me and my own doctor doesn’t seem that bothered. I have coped with the hair loss as putting on a wig is so much easier than spending time doing hair etc lol, but I have no energy, sore and swollen quite a lot, I just want to feel better... thanks

Also meant to ask if anyone suffers from neck rashes with under active as well x

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SeasideSusie profile image
SeasideSusieRemembering

Clairey2503

Tsh 1.1mlu/l <0.27-4.22

Free t3 3.68 pmol/l <3.1-6.8

Free thyroxine 16.5pmol/l <12-22

These results show that you are undermedicated. They are all in range so your GP will be satisfied but the aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges. Your FT4 is only 45% through range and your FT3 is just 15.68% through range. You need an increase in dose of Levo - 25mcg now, retest in 6-8 weeks.

You may find the following helpful in persuading your GP to let you have a dose increase:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor.

Thyroglobulin antibodies 132kiu/l <115

Thyroid peroxidase 214kiu/l <34

Your raised antibodies suggest that you are positive for autoimmune thyroid disease aka Hashimoto's which is where the thyroid is attacked and gradually destroyed. Did you already know this?

Fluctuations in symptoms and test results are common with Hashi's.

Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.

Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.

Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies and your vitamin results show generally poor levels.

Folate serum 4.4ug/l >3.89

Their range is 3.89-19.45 and folate is recommended to be at least half way through range so that would be 12+ with that range.

Vitamin b12 79pmol/l >37.5

Active B12 below 70 suggests testing for B12 deficiency. You're not in that category but not far above it, it's generally thought that an Active B12 level of 100+ is good.

If those were my results I'd be supplementing with a good quality, bioavailable B Complex such as Thorne Basic B or Igennus Super B which will raise both B12 and folate levels.

When taking B Complex it's important to stop taking it for 7 days before any blood tests, including thyroid, as it contains biotin which can cause false results when biotin is used in the testing procedure (which most labs, including Medichecks, do).

Vitamin d 32.9nmol/l <50-175

This is extremely poor and not far off Vit D deficiency which used to be diagnosed at less than 30nmol/L but many areas have reduced this limit to 25nmol/L now.

The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L. To reach the recommended level from your current level, you could supplement with 5,000iu D3 daily.

Retest after 3 months.

Once you've reached the recommended level then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

For D3 I like Doctors Best D3 softgels and for Vit K2-MK7 I like Vitabay or Vegavero.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.

Ferritin 85ug/l - 13-150

Ferritin is a measure of our iron store. This seems to be OK but the ferritin test is also an inflammation marker and can be higher than normal if there is any inflammation present. Your CRP inflammation marker is at the top of it's range. Hashi's can cause inflammation so it's possible that your actual iron store is less than this test indicates. To be sure of a reasonable ferritin level for iron stores I'd just eat iron rich foods regularly, eg liver (no more than 200g per week due to it's high Vit A content), liver pate, black pudding and other iron rich foods:

apjcn.nhri.org.tw/server/in...

pennyannie profile image
pennyannie

Hello Clairey and welcome to the forum :

Can I just add that the accepted conversion ratio when on T4 - Levothyroxine only is said to be : 1 / 3.50 - 4.50 T3/T4 with most people preferring to come in under around 4 or under.

So to find your conversion ratio you divide your T3 into your T4 and I think you'll find you are coming in at around 4.50 : so not ideal, but we do have some positive solutions that need explaining.

T4 is a storage hormone and needs to be converted by your body into T3 which is the active hormone that powers and fuels and runs the body.

Your ability to convert the T4 into T3 can be compromised by low vitamins and minerals and looking quickly I can see this has already been detailed back to you. Shore up your core strength vitamins and minerals and your ability to convert the T4 will improve.

Your T4 is not even at 50% through the range and we generally feel better when our levels are in the top quadrant, so at least one dose increase, and a follow up blood test 6-8 weeks later would be a good idea, as you do need to build up to around 75% + through the range.

An increase in T4 will proportionately increase your T3 and it is your level of T3 that gives you the symptoms you maybe dealing with - too low a level of T3 and you have symptoms of hypothyroidism and too high a level of T3 and you have symptoms of hyperthyroidism.

Since you have over range antibodies this is suggestive of Hashimoto's auto immune thyroid disease and this may throw a spanner in the works as your levels are prone to " spikes " in thyroid production caused by your immune system attacking and destroying your thyroid.

With every spike or hyper " swing " when the attack is over your thyroid hormone production becomes erratic and likely less productive and you will need an increase in medication to compensate for the disabled, dying gland.

I read food intolerances, and leaky gut common issues with this disease and notice many people referring to Dr Izabella Wentz books, for help and advice on anything to reduce the inflammation and calm down the immune system response.

There is much more on the Thyroid uk website who are the charity who support this amazing forum, and I think you'll need to read up yourself as no two people are the same.

I'm with Graves Disease, post RAI thyroid ablation in 2005 and fond this site around 6 years ago and started my own thyroid journey back to better health and you can too, as there is support and advice here from forum members who have the same health condition.

SlowDragon profile image
SlowDragonAdministrator

Working on improving low vitamin levels is essential

Which brand of levothyroxine are you currently taking

Do you always get same brand?

Many people find different brands are not interchangeable

Getting coeliac blood test done BEFORE considering trial on strictly gluten free diet

you have high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's frequently affects the gut and to low stomach acid and leads poor nutrient absorption and then low vitamin levels as direct result

Low vitamin levels affect Thyroid hormone working

Your vitamins are currently very poor

Poor gut function with Hashimoto’s 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.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 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

healthcheckshop.co.uk/store...?

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...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/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

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

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.

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

Folate and ferritin at least half way through range

Active B12 at least over 70

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well BELOW one.

Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

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